I'm Still Here

 A quick post to keep this blog from disappearing. I'm still blogging actively at: The Misadventures of Widowhood.

Traveling the Dakotas

All of us have favorite stories we like to tell on ourselves. Undoubtedly, Don has more stories in him than any human being I’ve ever known. He’s got the kind of memory that can recall details of everything he’s ever done in his life, every conversation he’s ever had. Those of us who spent a lot of time with Don before the stroke used to tease him that we had all his stories numbered. When he’d start a tale occasionally we’d groan out: “That’s number seventy-seven” or “heard that one, Don. That’s number two hundred and twenty.” Sometimes that was enough for him to realize that he’d been dominating the conversation and it was time to let someone else talk. More often, the story just had to run its course. He was in ‘entertain mode’ with no off button to push. 

When my dad was getting up in years, I recorded all this stories. I have his voice on six or seven cassettes; his tales of growing up in coal mining towns in Illinois are at my finger tips. Who would have ever guessed that I should have done the same with Don’s stories? All I have of his pre-stroke voice is: “Hello, you have reached 5-3-yada, yadda, yadda. Please leave a message after the beep and I’ll get back to you as soon as possible.” The message is in a tapeless telephone/answering machine combo and I couldn’t bear to record over it, so I bought a new one. Some times when we get together with close friends someone will tell one of Don’s stories for him. He loves that. 

Unfortunately, I don’t have the same recall that Don has because I’d like to tell about the time we roamed around rural South and North Dakota, just checking out what made those states tick. That was our style of travel: back roads, small town restaurants, local color, garage sales and auctions, if we found them. Of course, you can’t travel South Dakota without stopping at the Wall Drug store. We did, and loved that blatant tourist trap. We’ve got one of their signs in our living room and if you'd ever been in South Dakota fifteen years ago, you'll understand the humor of that. Those Wall Drug Store signs were everywhere you'd go for miles on end. Don was a good looking, masculine and virile looking guy back then in his Levi's, Stetson cowboy hat and Pendleton shirts. No tourist trap, weekend cowboy gear for him. He also had the tooled leather gun belt for his 357 and fancy Tony Lama boots. He lived the western look here in Michigan whenever he could get away with it. And even though he has a gentle soul, he could bluff the Clint Eastwood tough guy thing whenever the situation called for it.In North Dakota, I had been driving when we stopped at their version of a rest stop---a pull-off with two outhouses. I had to go, Don didn’t. Just as I got back near our Chevy pickup two locals pulled up and asked for directions to an address in Chicago. 

“Chicago?” I’m thinking! “Who asks for directions to a street in Chicago when you’re sitting in the middle of no where, several states away?” Don, he told me later, thought they saw me get out of the truck and they’d planned on hassling what they thought from a distance was two women alone. Anyway, Don gets out of the passenger seat, grabs a map and unbeknownst to me he jams his 357 in the front of his jeans. It was clear that these two guys had been drinking and were up to no good. So I’m thinking, “Damned it, Don! Get back in the truck so we can get the hell out of here!” Don had another idea. He tells me he’ll drive and makes a big production out of putting the gun on the hood of the truck---within easy reach---pulls open the map and says to the guys: “Now what was that address you were looking for?” Talk about leaving a dust trail. 

Those two Native Americans couldn’t get out of there fast enough. No one messed with Don when he was in his Clint Eastwood persona. But my favorite thing that we found by chance while traveling The Dakotas was a herd of buffalo. I was so excited when we came up over a hill and spotted them that all I could say was, “Buff, buff, buffalo!” And up to the day of Don's stroke neither one of us ever said just plain old ‘buffalo’---it’s always “buff, buff, buffalo.” I'd give anything to hear Don tell about our adventures out west again if only for one more time so that I could record them. 

Jean ©

Today's Word is 'Aphasia'

This article was first published by at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content here, that is the reason. 

According to the National Aphasia Association, an estimated one million people in the United States have acquired aphasia, or about one in every two-hundred and fifty people. With that many individuals affected by this devastating language disorder wouldn't you think that more people in the general population would have a better understanding of what aphasia is all about? Since my husband's stroke I've been hard pressed to find anyone outside of the medical profession who has even heard the word 'aphasia' much less understand that it's not a psychological illness or mental retardation. So, today's word---let's all say it together---is 'aphasia.' Aphasia is a condition, not a disease, and it's produced by a brain injury such as a stroke or traumatic head injury. Strokes are the most common cause of acquired aphasia. Even people within the stroke community have a hard time absorbing the facts about aphasia, that there are many types and degrees of severity depending on the exact location and size of the damage in the brain. Or in other words, all aphasia is not equal. Each person who has it is unique. Estimates from the National Aphasia Association say that approximately half of the people with symptoms of aphasia have transient aphasia and will recover completely within the first few days after a stroke or head injury. In the other half, for whose individuals with aphasia that lasts longer than three months, a complete recovery is highly unlikely. There is no magic pill, no hi-tech treatment or surgery that can cure aphasia.

Coming to terms with the more severe forms of this condition---the long terms deficits and social isolation of losing one's ability to communicate in the normal way---requires many months of treatment with a speech pathologist. But it's not hopeless in the sense that families dealing with severe aphasia, like our family does, can learn valuable coping and compensation techniques. People with milder forms can improve with hard work and therapy although aphasia never goes away for them; it will come back to haunt them when they are tired or under stress. Traditional therapy can include using computer-aided exercises which are best recommended and overseen by a speech pathologist so that you get the right "fit." Therapy is based on a lot of repetitive exercises and patience for everyone involved. My husband, for example, had a one word vocabulary for many months. That word was "yes" and it took many more months to get him to where he could say "no" with any accuracy.

People will naively ask me why my husband, Don, doesn't just write what he wants to say. I wish it were that simple but the type of aphasia he has includes a related condition known as agraphia which is the inability to use written language. This is not true for all aphasics, some can write and type.
People will tell me that Don was able to say such and such the last time they saw him. "Why can't he say it today? Did he have a relapse?" they want to know. They don't understand that: 1) he may have been parroting someone else's speech which isn't the same thing as planning what he wants to say in his head and being able to sequence the muscles in his mouth to get those words out; or 2) the sequencing might work for him one day, but not another.

Upon hearing this last explanation, some people will then ask, "Does he still have paralysis in his vocal cords and mouth then?"

"No," I'll answer, "That's a different stroke related language disorder from what Don has. His aphasia is paired up with apraxia, yet another aphasia related condition. He knows exactly what he wants to say---the thoughts form in his brain---but if he tries to say something, he can't. If he doesn't try, he can parrot whatever he hears if he does it with no forth thought." We use parroting to try to jump-start planned speech but it's not the same thing as teaching a little kid new words thinking that you're building vocabulary in a person with Don's combination of speech issues. His language disorders could be compared to a car with a bad transmission. His brain (the car motor) and the muscles in his mouth (the wheels of the car) work fine but the transmission in between is out of commission.

It takes a while for a speech therapist to sort out what type of aphasia/s their clients might have and it's not uncommon for a client to have several forms of aphasia and/or other related language disorders. The therapies often vary for different types of aphasia and their related conditions. In addition to apraxia, the labels that have been hung on Don's language disorders---all caused by damage in the frontal lobe of the brain---include: non-fluent aphasia, Broca's aphasia (the inability to use little words like 'it', 'to' and 'the') and telegraphic aphasia. Nouns come out the easiest for him but the other parts of speech are practically non-existence.

Other types of aphasia that my husband does NOT have include: Wernicke's aphasia (caused by temporal lobe damage and it produces fluent speech with no meaning), conduction aphasia (the speech is intact, but dictation is impaired), global aphasia (the person loses most language function, both using it and understand it), and anomic aphasia also known as nominal aphasia (it involves the inability to name objects). There are other types of aphasia as well. Often co-existing with aphasia are the conditions known as agraphia (writing impairment), alexia (the inability to read) and apraxia (a disorder of skilled movements).

What happens in the time frame when an aphasic and his or her family are coming to terms with the loss of easy communication? Denial, anger, depression and finally acceptance that life can and will go on---with or without a bad attitude towards the future. Even this far out from my husband's stroke---his stroke was in May of 2000---we still have a rare, stress-filled day where that stress is generated from communication problems; he wants to tell me something and no matter how hard I wrap my brain around the few clues he's able to get out, I can't crack the code. His daily unprompted vocabulary ranges around twenty-five words. Humor, we've found, is the best way to deal with aphasia. Sometimes it's the only way. A lot of funny things happen on way to learning to live with aphasia in the family.

Insurance never covers enough therapy for people with aphasia. We were luck to find a college near by that has a speech pathology department where future speech therapists work with people from the community. My husband goes to one group and one individual class a week when the college is in session. To be around others with similar problems and to learn as the students learn has been a blessing for both my husband and me. His prompted vocabulary still improves in the length of time it takes to pull words out of his head.

I was observing Don's group speech class last week when a new client was trying to say something about a photograph in front of him and all he could get out was "Yes, no. Yes, no." I leaned over to his wife and told her that Don does that "yes/no" dance all the time, too. She whispered back: "Doesn't that just drive you crazy! I'd like to bop him over the head when he does that." I laughed. I've been to Crazyville so many times I've put a down payment down on a condo. ©

You can find my new blog at The Misadventures of Widowhood and I have another blog dealing with aphasia at: From the Planet Aphasia

How to Be a Good Friend to Someone with Aphasia

This article was first published by at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content here, that is the reason.

The estimated number of people in the United States who have acquired aphasia, a language disorder caused by a head injury or a stroke, is over one million people. That's one in every two-hundred-and-fifty people. It affects individuals in all age brackets and chances are you either know someone who has aphasia or you will know someone in the future.
Not being able to communicate in the normal way brings on a devastating sense of isolation for people with this disorder and it often causes severe depression. Learning the basic, common sense tips listed below can prevent you from unknowingly adding to your friend's loneliness and dejection.

1) Don't stop calling your friend on the telephone. Just because he or she has difficulty talking doesn't mean your friend has lost interest in hearing about what is going on in your life. It may be hard, at first, to carry on a lopsided conversation but stopping your regular pattern of contact will only adds to your friend's isolation.

2) When making a social engagement over the phone, or planning a visit with someone with aphasia, confirm those plans with their spouse, significant other or caregiver. It may be hard-to-impossible for your friend to repeat those plans to the person who will need to know about them. Don't add extra stress to their relationship by not confirming your engagement or visit with both parties involved. What will only take you seconds to convey may take your friend hours to get across.

3) When seeing your friend in person, talk directly to him or her and not through someone else in the family. There are many types of aphasia but in most cases, people with aphasia can understand everything that is being said to them. Remember that the inability to processing language in and/or out usually has nothing to do with loss of intelligence. Treat your friend as an adult, not a child. If processing language in seems to be a problem, then allowing a few moments in between your sentences can help.

4) Whenever possible eliminate as much background noise as you can when conversing with your friend. Distractions from radios, televisions or other conversations going on near-by makes it harder for the people with aphasia to process language. If you need to repeat yourself in situations where background noises can't be eliminated, try to phrase your sentence the exact, same way the second time.

5) Don't call attention to or correct grammatical errors and poor articulation if the basic message is understandable. You are a friend, not their speech therapist or a close family member who knows what a therapist may have assigned for homework. Most people with aphasia are embarrassed enough about their diction, slurred words or inability to find the right words. Just getting their words out is often a major accomplishment. So be proud of your friend's efforts and remember that what you may think of as 'help' may seem like criticism to your friend.

6) When your friend is trying to get a sentence or word out, listen attentively and don't vocalize the word/s that you think he or she is trying to say. Give your friend plenty of time to get those words out without your help. If you guess wrong while he or she is still trying, you will break your friend's concentration and cause more frustration. If your friend had the word on the tip of the tongue, ready to come out, you will annoy him or her without meaning to.

7) Humor is usually a welcome commodity to lighten interaction with someone with aphasia. Don't be afraid to use it so long as you remember that the goal is to laugh with your friend and not at him or her.

8) A person with aphasia often gets more withdrawn in a group setting. Encourage participate in group conversations by occasionally asking him or her questions that have yes/no answers. Your inclusion will make him or her feel more a part of the gathering without the embarrassment of having to come up with a lot of speech.

9) Successful communication comes in many forms including gestures and facial expressions as well as the spoken words. Pay attention to your friend's body language.

10) The loss of friendships is one of the hardest parts about getting acquired aphasia. Don't let your own self consciousness keep you away. Relax and just be the same person you've always been around your friend.

Aphasia is a disability that has been in the closet far too long. People dealing with this disorder need the general population to understand that aphasia is truly just a communication disorder and not a mental retardation. If you take nothing more away from this article than this fact, that will be a HUGE help to all people with aphasia. ©

NOTE: There are links up above the title line if you wish to e-mail this article to someone or to print it out for yourself. Feel free to post a link back to this article, if you wish, but do NOT copy and paste the entire article onto another website without the written permission of the author.

Ten Tips for Caregivers to Stroke Survivors

This article was first published by at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content here, that is the reason.

According to the American Stroke Association 5,700,000 stroke survivors are alive in the United States. Strokes, they say, are the leading cause of long-term disability. If your loved one just had a stroke, you (or another relative) will face the scary prospect of becoming a new caregiver as soon as your survivor is released from the hospital or stroke rehab center. It will be a long road filled with small and large disappointments, tiny and great rewards.

At times you will feel helpless and inept. At other times you will feel like you are your loved one's greatest warrior in a world where you have to fight for therapies, information, understanding, help, payments from the insurance companies, and time to get everything done that needs doing. These are all normal experiences and feelings. Adapting the ten tips below can help you cope and become a more effective caregiver.

(1) Keep good records. Set up a notebook with sections to:
a) Document all your phone calls to doctors, therapists, hospitals, and pharmacies.
b) Document all applications and contacts with places like Social Security Disability, the Veteran Administrations, insurance companies, banks, pension administrations, etc.
c) Document out-patient or home therapies and your loved one's progress and moods
e) Keep a record of all appointments
f) Keep contact information for doctors, hospitals, therapists, pharmacies, facilities, agencies, community and internet resources, etc.
g) Keep notes of all medications given and the effects you see in your loved one when changes are made

(2) All strokes are different depending on the location in the brain and the size of the clot or bleed. All stroke survivors are different depending on their determination, age and inner resources. Research your care recipient's type of stroke. Know what part of the brain was damaged and what that part of the brain controls. The more you know about strokes the better you'll be able to react appropriately to the changes you'll see in your loved one and to become a better caregiver.

(3) Be grateful when extended family or friends pitch in to help and don't let yourself be eaten up with resentment when they don't. It's common for people to rally around in the first month, and then drop off after they think you have settled into your caregiver role. Keep a To-Do list handy for those times when others ask, "Is there anything I can do?" People will response quicker if they are given a specific task rather than a general, "I'll let you know." You can even make a joke of it and say, "Here's my To-Do list. Take your pick."

(4) Develop a sense of humor. It defuses the tension when speech issues come with a stroke, food is spilled or other frustrations and accidents occur. Don't treat them like the elephant in the room that no one talks about.

(5) Find a local or on-line stroke support group. Call your local rehab hospital's social worker to see what might be available locally. On-line you'll find message boards at Empowering Caregivers, The American Stroke Association and The Stroke Network where you can interact with other caregivers.

(6) Be grateful for and celebrate every sign of progress no matter how small, but remember that your stroke survivor might take a step backwards once in a while. Plateaus will also happen; don't get discouraged when they do even though insurance companies will drop coverage for therapies when a plateau lasts too long. Plateaus are sometimes followed by a nice, spontaneous jump forward. If you see positive changes happening after a long plateau ask your doctor if she or he will write you a new prescription for more therapy. If it's a new calendar year, you can often get the insurance companies to agree. Be a strong advocate for your stroke survivor.

(7) When you feel over-whelmed, call an understanding friend to confident in. Ask for, or hire, help if you need to run away from caregiving for a few hours. A movie or a walk in the park can do wonders to recharge your batteries. If you have trouble finding someone to sit with your care recipient, check to see what community resources are available in your area such as adult day care or caregiver respite services through churches or synagogues. Most areas have a 211 telephone system. Start by calling that number for caregiver related referrals. Above all, don't feel guilty if you need a break.

(8) Subscribe to the Stroke Connection Magazine (published by the American Stroke Association) and theStroke Smart Magazine. (published by the National Stroke Association. Both of these magazines are free and can be ordered on-line.

(9)You will make mistakes, loss your temper and/or have feelings of complete helplessness. Don't beat yourself up for this. You are only human and the beginning weeks/months of caregiving are very stressful. Give yourself time to adapt to your new routine and to develop coping skills. Seek professional counseling if you start feeling too trapped, resentful, lost in the shuffle or seriously depressed. Many caregivers as well as stroke survivors need antidepressants in the first six months following the stroke. Remember you can't care for someone else if you don't take care of your own mental and physical health.

(10) If you are caring for a parent, the role reversal of a child taking care of parent---no matter what your ages---is a difficult transition to make for most new caregivers. Much depends of the personality of the care recipient's ability to give themselves over to that care and on the son/daughter's ability to accept the fact that they are TRULY in charge, even if it's only temporary. A caregiver to a parent who has had a stroke must be prepared to make the tough decisions, even if you get no cooperation from their mom or dad. Don't feel guilty if you have to go against their wishes. It's pay-back time for all the times when your parent had to make unpopular decisions for you in YOUR best interest.

Being a caregiver is a job few of us want but most of us will do at one point in our lives. As you take on this new role, remember that you are not alone. Reach out to others who have been there, done that and who will understand how this job can be both the toughest and the most rewarding thing you've ever had to do. ©

NOTE: Please do NOT copy and paste this article to another website without the written permission of the author, but feel free to post a link back to this article where ever you wish.

How to Create a Family Caregiver's Home Health Emergency Care Plan

 This article was first published by at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content here, that is the reason.

 Having been a caregiver for my stroke survivor husband for the past seven years, and having share-cared for my dementia inflicted father the five years before my husband's stroke, I've learned a lot about the need to write an Emergency Care Plan. Family caregivers occasionally get sick or have other set backs that can put their care recipient in a dangerous position if an Emergency Care Plan is not already set in place. Unfortunately, I know from being a mentor on a stroke support website that most caregivers don't have an Emergency Care Plan and that is a potentially life-threatening mistake. What should be in your plan? An Emergency Care Plan should include all essential information another person needs to know to take over in your absence, be it a few days or longer. When you write your first plan, take your time and be as detailed as you can. Updating the plan periodically after that will only take a few minutes. The seven essential pages to include in an Emergency Care Plan are:

1) Medical Emergency Contact Information When you create your own Emergency Care Plan be sure your medical contact page includes the names, addresses and phone numbers of all the doctors your care recipient sees to manage their condition. List all contact information for medical insurance companies. Also include the dentist, hearing center, eye doctor and other medical services you may use for lesser emergencies that could come up in your absence. In addition include your hospital, pharmacy, wheelchair repair service (if applicable), and the contact information for the person who holds the Durable Power of Attorney for Health Care and the contact information for the successor should the primary patient advocate is not able to act.

2) Family Contact Information List all the people who'd need to be called should there be a medical emergency requiring hospitalization of your care recipient. Also make a note of which family or friends might be willing to patient-sit in your home for an hour or two, if needed, to back up the person who takes over in your absence.

3) Health Condition Information This page of the Emergency Care Plan needs to list of all the medical conditions that apply to your loved one.

4) Medications and Testing Needs On this page include not only the name of the drugs and dosages your loved one needs but also the times of days to dispense the medications, where you keep the bottles in the house, and what each drug is for. If testing is required to manage something like diabetes or high blood pressure list the frequency and target ranges and what to do if your loved one tests out of the range.

5) Daily Routine The family caregiver assists their loved one in way they often take for granted but it's important to pass these things on to someone taking over in a temporary situation. When you make your Emergency Care Plan be sure to write out detailed instructions for: special toileting requirements, transfers, showers, dressing, exercises or therapies, and daily routines, etc.
6) Meals and Food List any special dietary needs your loved one has including the time frames meals are usually served. List all foods and liquids that are not allowed because of drug interactions, swallowing issues or allergies.

7) Home Health Care Services In a worst case scenario where an outside service (rather than another family member) needs to be called your Emergency Care Plan should include contact information for professional home care services that you've checked out and/or prefer to use for your family member. If there are senior daycare services available where you live, list those too. A family member might be able to better manage taking over for you if they can use daycare. When you finishing writing your Emergency Care Plan be sure to carry in your wallet an easy-to-find paper telling where you keep your plan, should you get in an accident and not be able to talk.

The above seven pages are essential for your Emergency Care Plan. My plan also includes: a) A page for our vehicle that includes how to transfer my husband between the car and his wheelchair, how to operate the Bruno chair lift, insurance information, and who we use for service; b) A page for the care and feeding of our dog including some boarding options should that become necessary; c) A page for the care of our house and plants including insurance information and who we call for appliance repair, etc.; and d) An information page about my own health issues, my POA and medical contacts.

No one is immune to having a medical event or accident, caregivers included. If you are a caregiver without an Emergency Care Plan start planning yours today. If you know a caregiver---perhaps a parent, grandparent or friend---e-mail this article to them via the link at the top. It could literally save the life of someone you care about or take a lot of stress off from anyone who has to take over care in an emergency situation. ©

NOTE: Feel free to post a brief excerpt and link back to this article where ever you wish but do NOT copy and paste the entire article without the written permission of the author.

Published by Jean Riva

Caregiver Stress: Straight Talk for New Caregivers

This article was first published by at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content here, that is the reason.

Fifty million Americans, according to The National Family Caregivers Association, care for a loved one who is disabled, chronically ill or fragile from old age. That adds up to a lot of potential for caregiver stress and conflicting emotions.

The Deer Caught in the Headlines Syndrome
The family member who inherits the caregiver job after an accident or unforeseen health crisis faces overwhelming pressure. Feeling like a deer caught in the headlines, unable to move is a common emotion. Too much medical information is coming at them, too much is being asked of them and too much is being focused on the care recipient while the caregiver is falling apart inside and silently screaming, "What about me?" In many cases, the care recipient is the very person the new caregiver used to go to for support and comfort and with that relationship out of kilter, coping with caregiver stress can seem insurmountable.

The God-Never-Gives-Us-More-Than-We-Can-Handle Myth
A lot of platitudes are thrown around when caregiver stress manifests itself and the new caregiver tries to reach out. Friends and co-workers trying to be sympathetic often say things like: "God never gives you more than you can handle" or "get a grip" or worst yet, "you're not the patient here." For a few people platitudes might work to help them screw up their courage but for others, they are freaking out inside and wanting to shout back: "I do have more than I can handle. I can't get a grip and I might not be the patient here but I still need help!" What caregivers, and those who care about them, often don't realize is that caregiver stress---in the early months---is rooted in the Five Stages of Grief. Mourning a past way of life and fearing an uncertain future takes its toll. It's like being shell shocked. They are just going through the motions of what is required of them.

Crawling Out From Between the Rock and the Hard Place
Anyone who is familiar with the Five Stages of Grief knows the first stage is denial followed by anger, bargaining, depression and finally acceptance. Most caregivers move through the denial stage fairly quickly. But the anger stage is a different ball of wax, bringing on a lot of caregiver stress. They are angry at everyone: God, their care recipient, themselves, the medical community and/or people who they perceive as going about their own lives without acknowledging that the caregiver can't do that. They are floundering at getting organizing and unable to see that the solutions to their problems aren't going to find them; they have to go looking for way to reduce their caregiver stress. To dig out from between that rock and a hard place the caregiver needs to acknowledge where they are in the Five Stages of Grief and to seek professional counseling or peer support in the caregiver community if they have been stuck in one stage too long. Until new caregivers get to the acceptance stage, they will not be able to put the 'why me' mindset aside and start rebuilding their lives.

Staying Power for the Long Haul
Once a new caregiver is at the acceptance stage it's easier to put into practice the things they've read or heard about dealing with caregiver stress i.e. finding outside help. They will call their local 2-1-1 telephone referral system to learn what resources are available in their county such as adult day care, caregiver respite, home health care, social services, transportation services, Elder Care, peer support groups, and organizations like the Easter Seals, Lyon's Clubs and Red Cross that in many communities offer limited help. They will weigh up the options of downsizing, nursing homes, assisted living or hired caregivers. They will start believing that they do, indeed, have a right and a responsibility to look after their own mental and physical health as well as that of their care recipient. They will read the Caregiver's Bill of Rights and use it as a mantra should they be dealing with guilt trips or manipulation. They will find a family counselor should they need help dealing with extended family.

To hang in there for the long haul, and reduce caregiver stress, a person needs to form a plan and work the plan and that plan must include saying goodbye to their old life. Being a family caregiver can be a rewarding experience but it doesn't come without sacrifices. The biggest challenge a caregiver faces is---as the Serenity Prayer says---finding the courage to accept the things that cannot be changed, the courage to change the things that can be changed and the wisdom to tell the
 difference. ©

NOTE: This copyrighted article may not be cut and pasted to another website without the written permission of the author. A link back to this page plus an excerpt of the first four sentences may, however, be posted elsewhere. To e-mail this article to a friend or family member, see the link below.

Published by Jean Riva

Updating....

It's been just over two years since Don passed away and he is still very much missed. Since then, I've been at my other blog---The Misadventures of Widowhood---over HERE.

I have two blogs at Bloggers. This one and another called From The Planet Aphasia. This blog preserves our 'Speech Class Diary' that was kept over several years after my husband's stroke. The diary is a detailed account of the types of therapies that are commonly tried after strokes and the emotions that went along with the therapies.

The other one is called the The The Misadventures of Widowhood  After 12 years of living with his stroke related disabilities my husband passed away. He worked hard at living the the fullest of his abilities and I was very proud of how hard he worked on his speech.
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COPYRIGHTED The contents of this blog is copyrighted and may not be reproduced or displayed without the written permission. A short excerpt and a link back to any of the entries here is acceptable. Jean Riva © 2007

Speech Class Diary, Part 5

This part of the diary covers 2/06 through 3/06.

2/15/2006, Spring Semester
Ma and Pa Kettle go to Speech Class

Don had his first speech/language pathology evaluation at the college yesterday. He’ll get two undergraduate student clinicians this semester and they’ll be supervised by the same professor we’ve had in the past. I love our professor. She’s really good with Don, pushes him hard, and she’s a thorough teacher with the students. She also gives me the same in-depth, quality answers to my questions as she gives to the students. The plan, this semester, is for me to be in the observation room instead of the treatment room. Hallelujah! It’s dark in there and I can relax more without worrying about being caught on camera or being observed picking my nose---not that I would, but I’m old and who knows when that ‘grown-up filter’ gives out on you and you start doing quirky, senile old people stuff.

The girls did the standard auditory comprehension tests and the oral motor test. I’ve seen these tests given so many times, I could give them myself. In the comprehension portion, Don did much better than I’ve seen him do in the past. He was up to doing four part instructions, for example, before he wiped out and he breezed through the some of the simpler ‘naming’ and ‘finding’ tasks. The oral motor test is done more for the student’s benefit than for Don’s. It’s an opportunity for them to learn to identify and evaluate the asymmetry of the face, mouth and tongue of a real stroke survivor. He got a tongue depressor shoved down his throat, looking for a gag reflex, and both students and the professor each found one. Yippee I O, gagging is good! After poking inside of Don’s mouth and having him make silly faces---tongue up, tongue down, smile, blow a kiss, etc.---it was determined that Don still has mild weakness on the right side thus the reason why he still occasionally chocks on thin liquids if he isn’t careful.

The goals set for this semester are two-fold. One is the same as last semester: to get Don to jump from one or two-word responses to full sentences. The second goal is to get Don to interact more with his Lingraphica machine, to help with conversation. All-in-all it was good to be back in the speech therapy frame of mind again even though I don’t look forward to being locked into that rat race schedule again. Hop on the Endy 500, honk-honk! Weave and dart. EEEEEKKKeeee! "Naughty" Toyotas better stay out of my way. (Don says 'naughty' whenever he sees foreign made cars on the road and does sound effects with my driving.)

I have to go now. I have to contemplate why I keep putting off buying new clothes! I felt like a bag lady on campus yesterday and I had stood in my closet for a full five minutes trying to find something decent to wear that day. My wardrobe consists of sweats, Champion brand jersey knit outfits, and tennis shoes---not that the kids on campus dress much different. But they have color, jewelry, real shoes and the layered look. I look like I got my color palette from a mortuary handbook. Someone should give caregivers Welcome-Back-to-Life showers!! I feel like I’m a zombie on auto-pilot who is just waking up and realizing that I’ve lost five and a half years of fashion savvy.


Jean Riva ©

2/22/06
Testing, Part II

Don’s second speech class of the new semester consisted of more testing. The professor was absence and I shared the observation room with one of the other students. They only have nine girls in the clinic classes this semester---down by about half their normal number---so we’ll get to know this crop quite well. The girls working with Don today started him out with an exercise where he was supposed to fill in the missing word at the ends of ten sentences. “The sky is ____.” “I like bread and ______.” “I would like a piece of _______.” I held my breath on that last question hoping that Don wouldn’t come out with, “I would like a piece of ass.” I could read that humorous retort in his eyes and I was thankful that the gods of aphasia didn’t kick it out of his mouth.

The next testing set consisted of Don being asked to make a sentence out of a single word. For example: give me a sentence that contains the word ‘house.’ Don didn’t do well at all. He wouldn’t have gotten any of the ten if the girls hadn’t queued him all the way. Had the professor been there, I know she would have corrected them for doing that. Testing is different from teaching. It really doesn’t matter for Don’s purposes but if this were an insurance covered therapy where the importance of documented progress were critical to keep that coverage coming what you don’t want a speech therapist queuing during the opening testing phase.

They did the Boston Naming Test, too, and Don breezed through that which was so different from the every first time I saw him take this test. The only ones he got wrong today out of a hundred were he said “steak” for a paring knife and “tree” for a leaf. The first time he took this test at the college four and a half years ago, he could only put a name to a few of the pictures.

Next came a bunch of facial movement tests: rounding lips, touching the tongue to the nose, etc., etc. Don got pretty silly with the puckering-up-for-a-kiss command. He had everyone laughing. To round out the hour, they gave him the reading comprehension battery of tests and he really did very well with them. The only disappointment of the day, for Don, was that no one noticed his ‘Re-elect Hillard’ bummer sticker on the back of his wheelchair. Oh, well, tomorrow is grocery shopping day and he’s sure to reel someone in while he’s out trolling for friends at Starbucks' coffee shop.


2/23/06
1st Group Speech Class of the Semester

When we woke up this morning it looked like Hollywood had turned a snow machine on outside our bedroom. It was coming down so thick we could barely see the pine trees just twenty feet from the window pane. The individual flakes were as big as dinner plates. Well, that’s a slight exaggeration, but they were huge and their laciness could be seen with the naked eye and it looked like a bunch of scissor-cut paper snowflakes were fluttering from the sky. I thought for sure we’d end up having to cancel going to Don’s speech class and I’d be spending the afternoon shoveling white stuff that was so fluffy it would have been akin to shoveling goose feathers with a soup spoon. But the Hollywood snow machine turned off and the sun turned on bright and beautiful before we had to leave and by the time we had gotten a quarter of a mile away, the snow on the roads had conveniently melted. Sometimes life is good!

On the drive through town, Don was in his “Chatty Kathy” mode naming things along the way and making little boy motor sound effects as I drove. EEeeeeKKKKK for the when I applied the brace. Grinding gears sounds for when I take off from a light....and I drive an automatic! Go figure that one. At one point---after he had named the yes/no houses (don't ask), the trees, buildings and a lake---I asked him if he was a tour guide. “Yes,” he answered, and I told him he’d missed the hot babe we’d just passed.

“Hot babe?” His aphasic brain processed the words.

“She wasn’t a shy virgin type dressed the way she was,” I said. “Want me to turn around so you can check her out?”

Don hesitated but finally answered, "No."

The group speech class---the non-verbal clients---has grown to six guys this semester, four of them in wheelchairs. Four of six guys have been together for several semesters now. Another guy who had attended two classes at the end of last semester was back again and the newest kid on the block will fit in well personality wise. His speech is at the REALLY-struggle-to-get-out-single-nouns stage. But he worked hard, wasn’t shy about feeling his way through his mispronounced attempts and he looked comfortable interacting with the others. We all laughed a lot. Group class is fun.

The two student teachers spent the entire hour on having the guys introduce themselves and their wives to each other and doing a word finding exercise. For the word find, they only had time for three categories: finding words that relate to baseball, then breakfast and finally to transportation.

We’re all going out to dinner after next week’s class, which is nice but to be honest if it weren’t for the guys in the group all having had a stroke Don and I would have very little in common with the others. We’re all in the same age bracket but our life experiences are a big gulf between us. Don and I don’t have kids, grandkids or a church family to chit-chat about and the rest all do. They say that snowflakes and people are all different, but in groups like this I often feel like a lump of coal in a sand pile.


2/28/06
Today’s Highlights….

It was barely past noon when we had our first emergency here on Elm Street. Yes, it WAS an emergency-type scream I heard coming from the bathroom. I wasn’t wearing my running shoes—or any shoes for that matter---but it didn’t matter. I went flying, old-lady style, to the other end of the house where I found Don was sitting on the toilet. Yup, he was sitting, not lying on the floor. There was toilet paper on the roller. I checked it twice. No pee was evident where it wasn’t supposed to be. There weren’t any cuts or bruises in sight and the exhaust fan was turned on. “What the bloody hell is the matter?” I asked Don in a kinder, more Miss. Manners tone of voice and with nicer word choices. (I was having a good day.) He pointed to his watch.

“Your watch battery quit working?” I asked.

“NO!” Don said, touching his watch again. Then he pointed to the television in the bedroom.

“Oh, my God!” I gasped. “You’re having a Bold and the Beautiful soap opera emergency!” The TV set was not turned to the right channel and today, at twelve-thirty, was Ridge’s wedding day to what’s-her-name---Brook---who he’d been married to twice before. No wonder my little groupie was screaming bloody murder.

The next big little event here on the Planet Aphasia happened as we were on the way to speech class. Just about everywhere we have to go takes us past the yes/no houses. These are two houses that we had looked at back after the stroke when we thought we might be able to find something that could be remodeled to suit a wheelchair. Both of these houses turned out to be wild goose chases that a relative had sent us on, but every since the first time we saw them Don never fails to grade their “suitability” as we drive by. The “no” house also gets the middle finger treatment---much to my aggravation. (I keep visualizing a beefy guy seeing it and wanting to stop our car to throw a few punches.) Anyway, today an aphasic miracle happened. The yes/no houses got upgraded to the good/bad houses. That mental dictionary in Don’s head that produces speech is getting closer to the right pages!

In speech class, all the tasks were reruns of things that were done last semester---sentence building from pictures, a listening task consisting of following three-four part directions using objects on the table, and naming words in categories.

The only notable thing that occurred in class happened when the student teachers showed Don a picture of a hunter pointing a rifle at an elephant. When one of the girls directed his attention to the hunter and asked him what that was Don-the-clown says, “Bad!” Then he put a little-boy-pouting look on his face, pointed to the elephant and hotly bellowed out “Baby!” Next thing you know he slammed the picture face-down on the table. “Bad!” he repeated. One of the student teachers turned it back over---they were both trying hard not to laugh at this point---and somehow they got through the process of pulling words out of Don, writing each one on a separate index card as he named them.

“The hunter is shooting the elephant,” the girls kept queuing him to say all together in a sentence, once all the words were written down. However, every time they got to the word ‘elephant’ Don would insert the word 'baby' with total disgust in his voice. Finally, they added an index card with the word ‘baby’ on it and Don was appeased. I was cracking up in the observation room. Don the hunter who always had the greatest respect for the ethics of good sportsmanship, and following the hunting laws, would not condone this hunting poo-haw, speech or no speech.


3/7/06
Simple Pleasures

We have a new word here on the Planet Aphasia: booger. “Thank you very much, dear,” I gushed as Don ceremoniously presented me one on end of his finger. And so my day started out with a ten yard sprint to the Kleenex box. You’ve gotta love a word like ‘booger,’ said with a beaming smile and a booming voice as if presenting a bodily fluid were a diamond on a silk pillow.

Then the dog found another kind of gift on the deck: a black cat who probably out weighed Cooper by at least two pounds. The he-haw square dance that transpired upon their meeting got the dog’s blood pressure up, his tongue hanging down and it put a smile on his silly canine face. Ah, the simple pleasures of life---nothing says spring is in the air more than yucky boogers and black cats.

Thinking it might make a good topic for an essay, I made a mental note to look for more simple pleasures through out the rest of the day. I knew there will be some because: 1) it was a bright sunny morning after a long dreary winter. And, 2) I might be old but I’m not a horse that can be taken out behind the barn and shot or pranced off to a dog food processing plant. I would not let our dog eat horse meat! If I did, how could I hold my head up high while walking through our living room? That herd of forty wild mustangs galloping across the wall would never forgive me if I turned our sweet little gourmet cheese eating poodle into a horse flesh eating wolf.

As we were getting ready to go to speech class I plucked a whisker off my chin and I wondered it this act was just a little too simple for my ‘Simple Pleasures’ list. I concluded that although getting rid of the annoyance gave me pleasure it also falls in the category of things that make a woman feel old. “Well, hells bells,” I reconsidered my thoughts. “At least I still find the image in the mirror vaguely familiar. It’s another good day here on Elm Street.”

Arriving on campus before my husband’s speech class, I pulled the Blazer to the back of the parking lot next to a little tree where Don likes to use his urinal. We’ve had a lot of time to ponder the beauty of that tree since his stroke. Today, the new growth branches were turning red and budding out and the bird’s nest that’s glued in a forked branch was still in tact, waiting for the return of its architects. Yup, who could not gush mushy platitudes about mating birds and apple blooms in the spring?

Watching Don’s speech class from the observation room today was more than a simple pleasure. It was huge, rent-a-billboard-for-the-front-yard amazing. Only someone who has watched a spouse struggle for speech can truly understand how exciting this is.... Today---five years and ten months post-stroke---Don jumped from a nouns-only vocabulary to saying a complete six word sentence, properly canted and without queuing. Of course, it took nearly a whole hour of working with pictures and index cards to get that sentence out of Don, but everyone in the observation room did a virtual standing ovation.

Yup, a booger on a finger tip, a black cat on the deck, the wonders of nature and hearing Don say, “The elephant is chewing the grass” makes for a great day here on the Planet Aphasia.


3/9/06
Jesse Crust

Don came rolling out of the bathroom this morning singing “pretty!” in an aphasic operetta. Silly me, I thought he’d found a pair of rose colored glasses and was making a statement about my looks. Wanting to milk a compliment a little bit, I asked, “You think I’m pretty?”

Don stopped singing and answered, “Me!”

On the Planet Aphasia words like ‘me’ and ‘you’ in addition to he/she, them/us, mine/yours, and girl/boy are usually used in the exact opposite way as they are on earth. So I had to get a clarification because, as you know, I’ve been trying to teach my husband Earth English. “You mean Jean is pretty?” I asked. Using the words ‘Jean’ and ‘Don’ for ‘you’ and ‘me’ keeps us from talking around in circles for ten minutes before we get things straighten out.

“Me!” Don said again, this time while thumping his chest with the palm of his hand. Well, I’ll be damned, I thought, he’s speaking Earth English without us dancing words back and forth like we’re doing an old Abit and Costello comedy skit. And I knew another good speech day was on the horizon.

“Yup, Don,” I agreed, “You’re the prettiest guy in the room.” He beamed---no low self-esteem issues on his plate.

Don’s been making great strides lately learning how to swear. As I was driving on the expressway today another driver ticked him off and he tried to say, “Jesus Christ” only it came out “Jesus Crust.” He knew it sounded wrong but he couldn’t figure out how to say it correctly. I wasn’t in the mood to do queuing for profanity, since we were on our way to a Christian college, not to mention the fact that I was laughing so hard it’s a wonder I kept the Blazer from driving up the butt of the car in front of me.

Don rolled the words ‘Jesus Cuss’ around on his tongue a few times and finally went back to ‘Jesus Crust’ all the while giving me ‘The Look’ that says, “Help me out here, woman!”

“Don’t look at me, Buddy-Boy,” I told him. “I’m not helping you get kicked out of speech class for swearing.” Finally, without a translation from my Aphasia Decoder Ring, the conversation and laughter faded away.

We got to the college campus, I unloaded the wheelchair and got my husband transferred and off we went to the elevator. As I stood there waiting and waiting for the slowest elevator on the face of the planet, I remarked to Don, “Boy, is this elevator slow.”

“Jesse Crust!” he swore, a look of total agreement and disgust on his face. And that was only the beginning. Group speech class today was an hour-long laugh-in starting with one of the other clients greeting another guy named Tim as, “Hi, Tit!” You have to see the humor of living on the Planet Aphasia. Otherwise the tears mess up pretty faces.


3/17/06
Comic Book Kisses

I woke up this morning, as I have on several occasions, with a conversation going on in the bedroom. Yup, Don was talking in his sleep again and not just a few random words. He was talking in full sentences and it lasted for several minutes. Intelligently, I understand how a person with severe apraxia and aphasia can talk in his sleep yet not be able to get the words out at will when he’s awake, but it still ticks me off. Mostly because he was talking so fast while I was half asleep and the words didn’t register in my brain so I have no idea what he was saying. It’s like climbing a mountain to hear Gandhi speak only to find out that someone glued marbles inside your ears and you can’t understand the wisdom he’s sharing with everyone who clawed their way up to the top. It’s not fair, not being able to process Don's conversation after all the speech classes I've attended! I’m going to get a voice-activated tape recorder for his bed stand so I can catch the next one on tape.

We have a new guy in group speech class and all his attempts to speak sound the same---like he’s saying the letter O. The professor was telling us that he’s got great potential for improving diction if he starts working on inside-of-the-mouth tongue exercises; he’s only been doing outside-of-the-mouth tongue exercises. All of these exercises are suppose to be done in front of a mirror and involve doing things like putting the tip of the tongue on the roof of your mouth, moving the tongue from side to side, etc. Don’s never had a problem with diction on the words he’s able gets out so, other than for testing purposes, he’s never had to do these exercises.

It’s fascinating, the range of language disorders that all get lumped under the heading of aphasia from brain processing issues to facial or tongue muscle control issues to transmission problems between the brain and the mouth. The latter of which is Don’s problem. To make it even more complicated, a stroke survivor can have problems in all these areas in various degrees. Plus there’s the whole category of language disorders called ‘dysarthia’ which involves damage to any of a variety of points in the nervous system.

The professor says it’s a good sign that in the past six or so months Don’s been talking in his sleep again, as he did in his pre-stroke days. He must have been telling a great story this morning because his conversation came laced with a lot of laughter. At least in another plane of existence motor-mouth Don still lives. But I gotta tell you…if I find out he’s wining and dining another woman in his sleep he’s going to wake up with his head in my personal waffle warping grip. Just kidding! If I were going to abuse my husband, I'd want him to be fully awake.

It seems silly now but a hundred years ago I stayed mad at Don for an entire day because he said another woman’s name in his sleep. Men, poor babies, can’t even get a break when they’re dreaming. In typical Don fashion, he thought it was the funniest thing in the world that I was sputtering and spitting over him waking up with the taste of reporter Lois Lane’s kiss on his lips. What? I’m a woman, aren’t I? And PMS knows no boundaries. Everyone knows that.

P.S. Don was going through a phase, then, where he was wearing a superman t-shirt underneath all his other clothes and he would make a silly production of revealing it.

Speech Class Diary, Part 6

This part of the diary covers 9/06 through 12/06.

Sept 20, 06
1st Speech Class, Fall

Yesterday was Don’s evaluations at the college where he goes to speech classes with undergraduate student clinicians. He’ll have two of them again this semester for his individual classes and three for group classes. The two girls for the Tuesday classes seem to have the perfect personalities for working with Don, not too reserved or shy. And he does better with people who have a good sense of humor. A couple of times, one of the girls instinctively was able pick up on what Don was trying to say with his telegraphic speech. (For those who don’t know what the means, he uses mostly nouns and is unable to get most of the other words out without a painful amount of queuing.)

Here’s an actual record of the words Don got out at the breakfast table a few days ago: “Belding, foreman, 20’s, Dodge, Olsen, two---Olsen, Olsen. See. Florida.” It was one of his better ‘conversations’ because I didn’t have to dance around too long to figure out that he was talking about his x-foremen who used to live in Belding but moved to Florida in retirement. He also had one of those highly prized verbs in the mix. What the Dodge and 20’s had to do with the foreman is still a mystery but the “see” part was Don expecting me to pack up the car and go visit the guy. Sure, Don. Aside from the fact that he hasn’t seen the guy in ten years and he’s been dead for five, this little wifee-poo doesn’t do long-distance driving anymore.

During the evaluations, Don got a 100% on the yes/no questions that they use to test cognitive issues. No surprise to me. With visual retrieval of words he didn’t do very well and they stopped the test before getting to the end. Then they have a section where they use what I call trick questions that are meant to test listening ability. Questions like: Will cork sink in water? Is a hammer good for cutting wood? Don got about 25% of them wrong which didn’t surprise me because listening has always been one of his deficiencies that speech therapists have worked on since day one.

Then they gave Don story questions that got increasingly harder as they went along. He didn’t do very well on those at all. This was followed up with the Boston Naming Test that seems to be pretty standard for all speech testing sessions. For the most part, Don did excellent---spitting those nouns out quickly---except he had problems with: volcano, unicorn, tripod, octopus, stereoscope and cactus which took a lot of time and tries and in some cases, he never did get the words out. During this test, Don got stuck on saying the same noun for several pictures in a row and the professor stopped the test, explained why he was doing that and told the girls to watch for that in their clients and give them little breaks when it happens. I love the academic setting for speech classes. I learn, too.

At another point during the hour Don had a series of coughs after sipping coffee and the professor again stopped the testing and gave a mini lesson of swallowing issues. She said when he swallows liquids Don doesn’t realize that he isn’t swallowing it all and it blocks his airway. But with Don, she said, he has a “healthy” cough that brings the liquid up so he can re-swallow it. “Listen for his ‘wet’ speech,” she told the girls and when you hear it, tell Don to cough." I’ve heard this stuff before, of course, but it’s nice to be reminded---especially the part about not panicking when Don turns beet red. “Trust that his ‘healthy’ cough can clear his airway,” she assured us all. This actually happens every couple of months. Without the cough, the professor said she’d recommend another swallowing study but with the cough, she isn’t worried about his swallowing issues.

At the end of class, the professor said to the girls, “Trust me, Don will be the best client you will ever have. You will learn a lot from him.” Don, upon hearing that, did his classic Jack Benny gig saying, “Well” as he raised his eyebrows and slapped the side of his face. I knew what the professor meant by that statement. She’s told me in the past that they keep asking Don back because he teaches the students that even though a client is without much speech they can still have strong personalities and can learn to be completely at easy out in society. The latter is one of a speech pathologist’s goals for people with very severe aphasia and apraxia like Don's.

All and all Don was happy to be back at school and I’m pleased that we got our favorite professor to over-see his student therapists.


Jean Riva ©






11/14/06
A Crying Good Day

Before aphasia and apraxia entered our lives, Don used to love to tell a story about his 1984 hunting trip out west with his life-long friend. Don had taken delivery on a brand new pick up truck a few hours before leaving and on the second day in Wyoming, his friend shot a hole in the hood of the new Chevy. What happened afterwards was a story that Don could spin into an hour long monologue that would have his audience holding their aching bellies from laughing so hard. He’d told the story so many times over the years that it was perfected into something similar to a Mark Twain tale---suspenseful, dramatic, humorous, hear twarming, Don’s story had it all.

The student pathologists, knowing that Don used to be an avid storyteller, asked me to write out one of his favorites so they could use it as part of his speech therapy. I sent them a copy of a blog I wrote long ago about this hunting trip. The girls simplified the story down to 20 sentences and they had each sentence on a separate slip of paper. One by one, they spend the entire hour helping him get out the sentences in sequence to tell story of the year two old friends who went on hunting and bagged a Chevy.

I sat in the observation room watching and about seven sentences into the story I started chocking up and trying to hold back the tears. I never thought I’d ever hear Don tell that tale again. It didn’t matter that each sentence had to be repeat six times with the therapist doing the model-model-together-together-fade-and-alone pattern of queuing the sentences out of him. It didn’t matter that all the rich details were missing from Don's pre-stroke version. Don was storytelling again and he was having fun doing it! A powerful flood of emotions washed over me when that thought hit me. I couldn’t keep the joyful tears from tracking down my face. And for the rest of the hour I alternated between laughing and cried so hard that by the end of the session I felt like I could take a two hour nap. I truly had a crying good day.


12/06/06
School’s out! School’s out!

Free at last! Yesterday was the last day of speech class until the middle of February when the college resumes their speech clinic again. I can’t tell you how happy that makes me. We’ve been on the go since last year’s winter break and I’m tired of being on the run. Hey, I’m just plan tired! Most years, we get the summers off from the craziness but because I filled last summer up with get-control-of-Jean’s-health stuff we were busier than ants at a picnic.

Yesterday was the discharge evaluation and the party that follows afterwards. Don’s evaluation report was good. He showed improvement in auditory comprehension, reading comprehension, verbal expression and cognition. For social pragmatic communication they wrote: “Don has a great sense of humor. While easily distractible he knows when to be focused again.” That’s my guy---easily distractible. The best part, though, is always at the end when they recommend that he come back next semester for group and personal therapy. We sweat this every time. He’s going to be one devastated guy when the time comes when he doesn’t get that recommendation. One of our friends from group class, who is even-steven with Don in both physical and speech disabilities, didn’t get invited back last semester and I thought Don was going to cry for the guy. I was one mad mama that his student clinician ‘flunked’ him when, in fact, it was probably her that didn’t work hard enough.

We always give Don’s two student clinicians and the overseeing professor little gifts at the end of these classes. This year, both girls were BIG TIME fighting back tears when they opened up the boxes with the silver tone wishbone necklaces. Good thing we were still in the treatment room before the party. Not everyone gives their clinicians gifts and most of those who do give things like flowers, homemade baked goods or hand lotions, etc. I like to give something lasting as a keepsake from their very first speech client. We don’t have any other gifts to buy for the coming holiday, so we put thought into these two.

Speaking of gifts, Don wore his new Christmas present (the Pendleton shirt) and he was as proud as a peacock in his sea shadow plaid western cut. I wore one of my Christmas gifts, too. Every since I graduated from college back in 1985 I’ve wanted an alumni sweatshirt and this year I ordered one. It took my twenty-five years, start to finish, to graduate and I thought it was about time I treated myself with something I've wanted for so long. I’m teasing Don with the other gift I ordered off e-Bay, the Amazing Grace set. I’m doing what he did with the shirt---opening the front door every half hour and fake crying that the UPS truck isn’t coming. I haven’t told him what I ordered, either. I told him someone should have a surprise on Christmas.

Speech Class Diary, Part 7

This part of the diary covers 2/07 throught 5/07, the spring semester. For entries made after May 2007 you can visit my Yahoo 360 blog at: Click Here! Yahoo is were all my current blogs will be from now on. This part of the diary starts with February/07 through May/07.

Feb 14, 07, New Semester

Don started back to speech classes again this week. The two student clinicians he’ll be working with at the college have good personalities to mesh with Don’s which I always sweat each semester for naught. The plan, this semester, is to target verbs (actions words) which totally elude Don and all the testing they did on the first day of class reflected that plan of action.

You can show Don a picture of something like a hand cutting a piece of paper and he can name the nouns---‘hand’ and scissors’ and ‘paper’---but ask him what the hand is doing with the scissors and even torture couldn’t get the work ‘cutting’ out of him.

Wish us luck, gang! Without those verbs there is no hope of every getting full sentence.

Jean Riva ©



2/25/07
Teaching the Teachers

Don’s first session with his new student therapies was interesting, mostly because the professor did a lot of teaching on how to administer the therapy tasks leading up to getting verbs out of a patient.

The first task involved showing Don three photographs and he was suppose to point to the right photo to match a single word that the student ST would say. Verbs like: eat, drive, and tie. This task was easy for Don---got 100% right---but was leading up to harder tasks.

The second task was the same principal except using five photographs instead of three and since that, too, was easy for Don it was deemed he was ready to step it up. The rule is 80% correct before going to something more difficult.

And for the third task they would lay one card down at a time (the same photos they’d just used) and ask Don to name the action/verb. For example, "What is the girl doing?" for a picture of a girl lying in bed with her eyes closed. The expected word would be ‘sleeping.’ Out of ten photos, Don could only get out three verbs. They just don’t want to come out of his aphasic brain and haven’t for the past almost seven years.

This is where it got interesting—at least for me watching from the observation room. The professor stepped in and said concepts/verbs are harder for people with aphasia to name than nouns/object. And since Don has spent so long trying to name objects (nouns) in his post-stroke life that it’s going to take some hard work to get him to understand that it’s a concept/action/verb, not just any word relating to the picture, that they want from him. She didn’t want the students to give him the correct words when he comes out with something wrong. She wants him to struggle harder, to keep trying until he finds it for himself.

For example, for a photo that the professor showed Don of a man watching TV, Don’s first try was ‘smelling’ [the TV]. The professor then used her voice in an exaggerated question to say back to him: “He’s SMELLING the TV?” It was giving him a queue of without giving him the correct word or the first part of the word. When he’d come up dry for another try, then the professor would go back to laying three photos down and asking him to point to the card that matched the word ‘watching.’ Easy. He could do it and it was back to the single card again of the man at the TV and he couldn’t name what the man was doing. Back and forth they went between the three card task and the one card task. At one point there was a break through and we all saw Don struggle through a dozen words that all sounded similar to ‘watching’ until he FINALLY said watching.

It’s okay, the professor said, to let Don get a little stressed in the process and to urge him to keep trying to come up with words. It’s the TRYING that’s going to make it click in his brain. She said she will always jump in when she thinks the student ST’s are doing Don’s work for him and giving him the queues/words too early. It’s a fine line to walk, she said, because it’s a natural pressure for clinicians to want to give just the right queue to get the words out of a client but by giving too much he isn’t attempting to make the new pathways in his brain. Just remember, she said, who is supposed to be doing the verbal work here.

So after that teaching mini session, the next time the professor demonstrated the three card/one card task using a photo of a guy riding a bike it went text book perfect. Don came up with the words: running, wheeling, walking first and with each word the professor would repeat it back with the huge question in her voice. Then came ‘riding’ out of Don. All this in about a quarter of the time it took for the word ‘watching.’

And that ended the hour session. Don was exhausted as he always is after a good speech session. He often sleeps on the way home as if he’d just spend a hour shoveling dirt instead of shoving words out his lips.


March 1, 07
Individual Class, Week Two

Part of this class was a continuation of the same tasks they were working on as described in my blog entry titled “Teaching the Teachers.” The student giving Don the task had done her homework. I could really see the different in the way she came out of the gate to administer the therapy and when she asked Don to name the verb/action of the photos she’d set down in front of him, he spit out five of them in a row so quickly that it blew my mind---eating, drinking, sleeping, brushing and shaving. The next photo of someone washing their hands, he said ‘soap’---reverting back to naming a noun---but it only took a queue from the professor or, “I am ______my hands” to get ‘washing’ out of my husband. The next photo to correspond with the word ‘pouring’ took a gesture of the action to get the correct word out of Don. All and all, this therapy went extremely fast compared to last week tracking through ten photos. I was amazed.

For the next therapy involved showing Don a sentence and two similar pictures. He was to read the sentence to himself and point to the correct sentence. The first sentence, for example, was “The monkey is in the tree.” Both pictures had trees and monkeys but only one monkey was in the tree. Then he was queued through reading the sentence out loud. At one point early on the professor stopped the task and told the girls that they were allowing Don to take his queues from reading their mouths and he really wasn’t reading the actual words on the paper which wasn’t helping him accomplish the whole point of this therapy. They had to be sure, to keep their clients focused visually on the paper. After that, the exercise got hard and frustrating for Don and the students got uncomfortable. The professor again stopped the task and asked Don if he was frustrated. “Yes,” he answered. “Do you want to give up?” He replied an emphatic, “NO!” I’m guessing this was done for the girls because the professor made a remark about getting used to clients struggle and to a certain amount of being uncomfortable watching that.

While I was in the observation room another professor came in with a woman who was applying for a job as a speech pathology professor. They started talking about how Don was the only client they’ve ever kept so long. Most are discharge after two years. But, she said, they keep Don to teach the girls that progress doesn’t have to end even when things look hopeless in the beginning of working with a patient. She say he helps them understand that cutting a client off from therapist should be a very difficult decision for them, not to be taken lightly. Wow, I thought, he came into the program with cognitive issues and extremely severe aphasia and apraxia and they’ve documented on tape every step until now when he clearly shows his keen intelligence, good sense humor, etc. I can see how those tapes would be a good teaching tool to get this message across to future speech pathologist.

It was another good session.


3/1/3/07
Annoyances and Accomplishments

This was a weird sort of day. It started out with me wanting to kill my husband. Yes, the man was trying to wear out my name this morning. Don was suppose to be getting himself a sponge bath and then dressed for his speech class while I was trying to get some important work done behind the scenes here on the site. Every five minutes I heard bellowing from the bedroom, “JEAN! JEAN!”

As all caregivers know you can’t ignore a call like that, even if you’re pretty darn sure your mate isn’t on his death bed or that a gun toting robber hasn’t entered the house. And it was true today. Nothing justified the urgency in his voice. Once there was a little piece of paper on the floor. “You aren’t helpless,” I told him. “Pick it up.” Once he couldn’t decide between black pants or blue pants. “You’ve got three hours before we have to leave,” I told him. “You’ll figure it out.” Once he wanted the channel on the TV turned and I again I told him that he is perfectly capability of changing the channel. “Oh,” he cheerfully said as he reached up to push the button. Duh, he’s been doing this for at least a year! Several times he called but couldn’t tell me what he wanted and I couldn’t guess.

Then while I was in the observation at the speech clinic this afternoon Don, the same man who nearly drove me as batty as a bat in a belfry just blew us all away! He breezed through the therapy tasks that just two weeks ago were painful to watch. He was reading one, two and three letter words which is the first time ever he could do that. He was naming verbs related to pictures so fast he looked like he was trying to beat the clock in a game show and he was canting the sentences he was reading out loud like a norm speaking voice. We were literally all watching with our mouths wide open---the professor, Don’s last semester student clinician and three other students. I told the professor I’ve been riding Don hard all week, requiring him to name every action I do all day long and forming a sentence out of every noun he says and making him repeat those sentences several times. She said “keep it up!” He is close to having a break through to thinking in verbs and that would be a HUGE step to learning to talk again.

Another interesting thing happened in the clinic waiting room. A student clinician who Don had several semesters ago came back for a visit. She’s in grad school and she was all excited about a treatment she is learning for the treatment of apraxia. (This is a major part of Don’s speech issues.) She told us that this treatment has been used with children for a while and they are just recently experimenting with using it on adults. If I understand it correctly---and I make no guarantees that I do---it’s sort of a reverse approach. Currently therapies work to try to get the thoughts that form in the brain to send signals to the muscles in the mouth and tongue to form the words. This other therapy is done by having the clinician working their hands on the face and tongue to try to get the muscles there to send signals to the brain that correspond with the sounds they are helping the client make.

It’s called PROMPT which is an acronym for Restructuring Oral Muscular Phonetic Targets. At a site on the internet it defines the therapy as follows and I haven’t got a clue what this really means: “PROMPT is a tactile based treatment method for reshaping individual and connected articulatory phonemes (sounds) and sequences. The system uses a different prompt for each English phoneme. This type of therapy approach is used with children who have motor based speech disorders such as Developmental Apraxia of Speech.” The girl who was telling us about it offered to work with Don next summer if she thinks she’s learned enough about doing it to help and our professor thinks the therapy would probably help Don and is worth a try.

Anyway, for a day that started out with such petty annoyances it sure ended up with some exciting accomplishments.


4/10/07
He, She and It

Such little words they are---he, she and it---but what a huge huddle they are for Don. This semester in speech class he’s been doing fantastic getting verbs out but in order to jump him into sentences he’s got to get past what is turning out to be a major stumbling block. He gets the ‘she’s’ and ‘she’ right when he’s looking at a picture of a woman or girl and is suppose to say something like: ‘she is reading’ or ‘she’s watching’ but when it comes to a man in a picture, he says ‘it is reading’ or ‘it’s watching’ far more often than he gets it correct.

Today was the second speech class he’s had where they worked on nothing but ‘he, she and it’ and I’ve been drilling him three times a day with flashcards that say: he’s he, she, she’s, boy, man, girl, woman, object, it, it’s, me, and you. There was progress today because sometimes he’d self correcting with the word “no” when he’d hear the wrong thing come out of his mouth. That’s auditory comprehension which is absolutely necessary for anyone with aphasia to have in order to learn to talk again i.e. if you don’t recognize your mistakes---then you can never word search in your brain to get the right words out. Auditory comprehension was also a hard-earned jump forward in progress for Don and its gotten better and better as time goes on. I can remember a time when he tested out at around 10% and I’m guessing he’d test out around 70% now.

He, she and it---I just want to get a hammer and beat those tiny words into his head one letter at a time. But I’ll resist the temptation---I hope! The professor says when it finally clicks in his head it will be like flicking a switch and it will stay on. Me being me, I wanted to read some psychological mumble-jumble into Don’s it-man hang up. I thought maybe he calls men ‘it’ because he sees the stroke as emasculating him/men. Nay, the professor says, tiny words are a huge problem for people with Don’s type of aphasia. Okay, I trust her expertise.


5/3/07
End of the Speech Semester

Today was a mixture of sad and happy. Don was sad that speech classes have ended until next fall. He always misses the energy that goes with being on the college campus where he goes for therapy. I was happy because speech classes have ended until next fall. Having two days a week tied up for classes keeps us on a rat race and I need the summer breaks and change in routine. There will be a summer social hour once a week for all the clients and we may try to go to some of those events. Don thrives being around all the people we’ve met through the language disorders clinic.

Here’s today’s evaluation report. Drum role, please. Don had a 60% improvement in the work he did on verbs since the beginning of the semester to the end. He barely scored at the beginning of the semester testing. Of course, he’s no where near fluent with verbs now. It takes a great deal of queuing to get them out of him but even so, he’s made remarkable progress this semester---beyond what the student clinicians and the professor had hoped for. And another drum role, please….when Don was testing he FINALLY self corrected himself when he called a guy in a photo “it” instead of “he.” He said, “it, no, he” not once but several times during the testing. Funny how so many people can get so excited about something like this, but we were. God, how we all take language skills for granted when we have them!

You wouldn’t believe the amount of homework Don was given for the summer. And it goes without saying that he was invited back for next year. He always sweats these evaluations because there is always a chance he won’t get invited back.

It’s been a good few days. The party after the evaluations today was fun.

Speech Class Diary, Part 4

Speech Class Diary, Part 4

These speech classes entries were moved from a message board to protect them from being deleted for being too old. For entries made after May 2007 you can visit my Yahoo 360 blog at: Click Here! Yahoo is were all my current blogs will be from now on. This part of the diary starts with 2/15/05 through 6/15/05.

Jean Riva ©


Spring Semester, Feburary 15, 2005

My husband Don’s stroke was May 21, 2000 and since then he has been struggling with aphasia and apraxia. As many of you may already know, when the college semesters are in sessions he goes two days a week to a local college for their Speech/Language Pathology Clinic. There, undergraduate student clinicians work under a professor to develop and carry out an individual treatment plan for him. He just began the spring semester with the standard set of testing that they do at the beginning and end of each new semester. For a detailed description of the tests given, you can find it in one of my first posts in the winter semester diary as they are the same tests given at the being and end of each semester.

The protocol for these classes is as follows: Tuesdays Don will have an individual class taught by two students. I and several other students will be watching from an adjoining room with a one-way mirror and TV camera that focuses on Don’s face. The professor will either be in the treatment room or in the observation room---I'm guessing her choice depends on how much intervention she feels the girls need or she wants to see if they work better or worse without her presence. All sessions are video taped to use as teaching aids in the language department’s other classes. The second weekly class, on Thursdays, is a group class. They have three groups: a non-verbal, a verbal and one in between. Don will be in the non-verbal group, again, I’m sure. He’d need to be getting out mostly full sentences---no matter how halted or slow---to advance upward.

We’ll get the results of the today's testing later on but as I watched from the observation room I could tell he didn’t do as well as he did when he ended up at the end of last semester. He’s been on a break from classes since just before Christmas, which could account for part of the back slide. But one of his student teachers speaks with a slight, oriental accent which could be a potential problem---especially for a guy who wears hearing aids. He had to ask her to ‘repeat’ quite often. At home, on a day-to-day basis, I know he has been doing better in the past month. Only time will tell if the classes will work out this semester.



February 22, 2005

The new semester didn’t start out very well. The two student teachers are, of course, a lot greener at this than Don and I are so it was easy to pick up on their miss-steps. In the past, for example, Don’s student clinicians have always asked me ahead of time to tell them about something we’d done recently. This gives them a better idea how to queue Don when they do their ten minute ‘conversation’ before they get into the therapy part of the hour. These girls didn’t ask me, so they were flying totally blind and they didn’t really understand where he was trying to go when he tried to tell them about the night Don’s x-coworkers came to visit.

Next they did some testing that didn’t get done during the testing session last week: standard stuff like following directions/cognitive skills i.e. stick out your tongue, bite your lips, etc. Don scored high on this stuff, as expected. Next they tested reading comprehension by having him read sentences and match them with the correct pictures. The book they were using has a pop-down stand that puts the book at the right angle for reading but they didn’t find it until the test was almost over. This gave Don some visual problems and afterwards, when I asked if he could see the book, he said no.

The first therapy task was one he’d done last semester: they showed him photos of objects and he was supposed to describe the objects without naming the object. (This is part of learning to build sentences.) For example, looking at a photo of a razor Don was able to say, “White,” “sharp” and he gestured for its length. For a backpack he was able to say “black and red,” “zipper,” “cloth,” and “put ball in it”---he thought it was a bowling bag and so did I, you couldn’t see the straps in the photo. Half way through this session the professor got involved and started teaching the girls better queuing techniques because they’d been fumbling in the dark.

The last therapy task of the hour involved having Don look at photos and trying to get words out of him that described the actions going on. For example, with a photo of a man reading a newspaper Don was able to say: “reading,” “paper,” and “boy” and a sentence was then formed for him to repeat of, “The boy is reading the newspaper.” This exercise really was a valuable task last semester, so I hope they continue using it.

Out in the hall afterwards, one of the students who has always made a point of talking with Don asked him how it went and he came up with a brand new word: “Poor.” But we both assured him it will get better. And it will. It takes a few sessions for the girls to get know him and get over their timidness, plus the professor will not let things go too long if she sees the girls need her input. Last semester we had exceptionally good student therapies---the professor had said they both were getting A’s---so we’re a little spoiled I think.

I can’t wait to see who will be in our group class on Thursday. We saw a lot of familiar faces in the lounge area and a lot of new ones, too. One of Don’s student teachers from last semester even brought him a little gift she’d picked up for his gas station memorabilia collection. He was sure pleased about that. Over a semester, it’s easy for him to grow attached to girls…and I think in many cases, they get attached to him, too, because he’s their first real patient.

I also got a chance to ask the head of the language disorders department about the aphasia constraint therapy I’ve been reading about on the internet. She says it’s kind of a marketing technique for an expensive therapy. It involves going somewhere to live for 8 to 12 weeks and spending three to five hours a day with a speech therapist. They use every day things like eating, showers, grooming, etc., to drill speech all that times. She said it doesn’t really differ from the philosophy that they teach there at the college---there they have a clients see a ST once or twice a week and teach a family member how to make every day, all day long into a speech session the way I do with Don. She wasn’t sure the aphasia constraint therapy would work any better than a traditional therapy backed up in this way with an aggressive homework plan. But she’s going to ask her field therapies if there’s been in studies comparing the two. This explains why I wasn’t impressed with the results I’ve seen sighted on the internet of the before and after test scores on the Boston Naming Test for constraint therapy patients. i.e. Don had done as well in the same time frame with our $40 dollars a week, two hours a week, classes with the student teachers. However, for someone with no one in their life to work with them on a daily basis, all day long, I could see why they might want to pop with upwards of three or four grand.


February 24, 2005

Group class looks really promising this semester. Returning from last semester were Don and “V” plus we have a new guy, “TL” who goes to daycare part of the time. All three are wheelchair bound and all three guys are pretty evenly matched speech-wise. They interact quite well together and there was lots of laughing today. “S” the woman with fluent aphasia is coming back, I’m told, but wasn’t there today. One kind of funny thing about the new guy is that, according to the professor, he’s as big a flirt as Don is only he takes it a step farther---he likes to kiss all the ladies’ hands. The poor student teachers, if these two get out of control!

The student teachers all have the right demeanor for the class, too, which I was happy to see. They’re out-going, had good interaction going with the guys, and they seem to have a sense of humor. “MJ” and “L” are new to us but we’ve had “K” in group before. The same professor we’ve been working with since Don’s second semester here (in the spring of 2001) was there to supervise. She’s a very good teacher for both the student teachers and us spouses.

The first two thirds of the class was taken up with having the three guys introduce themselves, name their hobbies and wives and with the girls generally picking conversational information out of them. “V” and “TL” are both fishermen, so I’m sure we’ll be talking about that a lot this semester. The guys found out another common thread with the mention of old cars.

The last third of the class was taken up with playing a form of picture bingo. The cards had three pictures, in three categories: food, vacations and sports. For markers they used miniature chocolate bars and the guys got to eat one for every ‘bingo’ they got. Each word had to be said out loud several times over the course of the game---things like: corn, apply, tent, suitcase and skis. It’s a running joke in the department that the student teachers don’t have a chance of getting an ‘A’ out of this particular professor’s classes if they don’t bring chocolate to these group classes. So chocolate is usually the prize for winning the games played. All in all, I was pleased with this first group class of the spring semester.

Footnote: "V's" wife told me today that he had gone to one of those concentrated, high-priced aphasia programs and it didn't do him any good at all. But she said they had a neighbor who also went and he did very well.


March 1, 2005

We're snowed in and can't make it to speech class today. Don is disappointed. I'm just glad I don't to drive in all the drifting and blowing snow. We got ten inches over night.


March 3, 2005

Today's speech class started out with the student teachers having the three clients do a common word search exercise of naming things in a particular category. The category was things that relate to spring. Each guy was to name something, going around the room several times. When the list was nine words long, each of the guys had to read the list, which was written on a dry/wipe board. Each guy had to be queued about the same amount of times and each struggled with a few words during the reading phase.

Next they played 'go fish' with homemade picture cards. The object of this game is to get the guys to do repetitive phrases of 'go fish' and 'do you have a _____ ." Each guy needed queuing, but each guy also got out a few of these sentences on their own. They have fun with this game and the majority of the hour was spent playing it.

The third and last task was called 'gesture guessing.' They were each given a sheet of paper with pictures of nine things on it to act as their queuing or cheat sheets. Then each guy took a turn being shown an object (comb, hammer, spoon, etc.) which the others couldn't see. The goal of the task was for that client to act out a gesture that would tell what the object is, and the other two were to guess, using their cheat sheets. All three guys did good on the guessing part, but "V" and especially "TL" had a hard time gesturing. The student teachers had to move their arms for them. It made me remember how far Don has come in this cognitive task. Last year Don couldn't gesture very well, either, or it would be a gesture that was so far off, it was useless.

All and all, a good class today.


March 8, 2005

The individual class today started out with the student teachers giving Don a script that they want to use at the beginning of each class. It’s common conversational stuff like, “How are you?” “I am fine. And you?”---a dialogue that he can read and say out loud.

The first therapy task involved showing Don pictures and he was to name the ‘who’ and the ‘what’ for each picture. For example: Don was be able to get out “woman” and “washing” or boy/raking, man/sweeping, and woman/vacuuming. Once he got the ‘who’ and ‘what’ out for each picture, the girls would have him say the words together in sentence form i.e. “The woman is washing.” The professor was in the observation room with me and some of the other students and she remarked that the “L” was doing well at queuing today (big improvement from last week) and that Don was very fluent in repeating back the sentences. At one point he got side-tracked with “L’s” dimples and she doesn’t quite know how to handle his distraction tactics yet….but she’ll learn. She’d better! Don was pretty easy on her and backed off quickly when she got embarrassed. (Maybe he’s just getting his impulse control issues under control; God knows we’ve worked on it enough. I got the impression out in the hall that all the students had been 'trained' on how to stop a hug from Don in progress, it was mentioned that one of their goals for him was to get his hugging reprogrammed into more appropriate situations.)

The second task was designed to work on listening skills. They girls would put down four photos on the table, and then say a sentence. Don was supposed to point to the picture that matched what that said. This seemed easy for him and I could see the improvement from last semester.

For the third therapy task the girls laid two dozen picture cards down on the table and then they’d have Don pick out, first, all the vehicles, then the tools, fruits, and finally the buildings. The professor says this is stepping it up a notch to have Don thinking (and sorting in his mind) words in categories, functions and similes groups. He was in full ‘entertain the masses’ mode while he was doing this task---making sound effects like a car complete with squeaky brakes, horns, high speed and crashes as he ran his finger up and down the rows of cards in his search. He didn’t make but a few mistakes of omission in finding all the cards. All of us in the observation room were laughing at his antics and the poor students in the room with Don were trying their best to remain professional and not laugh. Don was once a terrific story teller and you’ve got to admire the fact that he is still able to find a way to be the center of attention without his speech.

The forth and last therapy task had everyone in the observation room rolling on the floor with laughter. The exercise is one where they role-play. One girl is a waitress, the other plays me. They use real menus and place settings, place orders, ask for refills of coffee, order desert, etc. Don did really well getting out the words he needed until the pretend waitress gave him the bill for almost $50.00 for two pretend sandwiches, two coffees, a piece of pie and a malt. He caught that it was too high and keep saying “no!” and pushing the bill away. Finally, the professor wanted to roll-play, too, so she went in the room pretending to be the manager to talk to an unhappy customer. The object---I think---in giving him a bill that was too high was to get Don mad so that words would flow better. They did. When the professor said, “What would you like me to do with this bill?” Don said: “Stick it!” God, it was funny and I was relieved it wasn’t something worse….this is a Christian college we go to.

After class the professor said she thinks that Don is an ideal candidate to get a Lingraphica, a communication and therapy device. It looks like a laptop but it has communication and therapy stuff programmed in it and it’s a lot of mouse work instead of keyboard, she said. It’s some government approved program that is covered by most insurance companies and by Medicare and the school can train him on it. I’m excited and will get the paper work done soon.


March 10, 2005

Don had to miss the group speech class today. He is SO sick with either the flu or food poisoning! We were up half the night. Next week is spring vacation for the student teachers so no classes. I hate these delays! One step forward and two steps back.


March 22, 2005

The first task of the day was the same as Don’s been doing in past individual classes where he looks at a picture and has to try to get out 2 or 3 words. Then when he names something like “girl” and “kite” then the student teachers queue Don to say a complete sentence like: “Girl flies the kite.” The professor wasn’t there for part of the session so she didn’t see that one of the student teachers kept trying to change Don’s word of “boy” to “man” or “girl” to “woman.” It bugged me because in the past when he’d come out with a word that was in the right category, the students weren’t supposed to put their words in his mouth, to change it if he had the gender right. On the good side, one of the students did good queuing today for action words---she’s learned fast. For example, when they were trying to get the word ‘bake’ out of Don she’d say: “you don’t fry the pizza, you……” or “you don’t boil the pizza, you…..”

For the second task, one of the girls would read a sentence and Don was to finish it. Examples: “I’ll drink my coffee from a _____. I can write with a pencil or a _______. My hands are dirty, so give me a bar of ______.” Don did well with these ten fill-in-the-blanks.

For the last half hour of the session I was asked to leave the observation room and go into the treatment room for a demonstration of the Lingraphica communication device that Don is going to be doing a trial on. It’s like a laptop that’s been programmed so that someone like Don can use a mouse to point to various categories with pictures inside. When you open up a category with a click, you can drag one of the pictures into a storyboard. (An example of a category would be ‘people’ and the Lingraphica is customized to have all the people in it that the client would want to talk about.) You keep point and dragging pictures to the storyboard until you’ve built a complete sentence. Once the sentence is put together, you can hear the sentence spoken by the machine, see it written out with words and see it as a storyboard of pictures all lined up. You can set the machine to speak in different speeds and the client can keep clicking to repeat the sentence as often as he/she wants to practice saying it out loud. It seemed to take forever to build one sentence and I was impatient with the process, but after not being able to communicate for nearly five years, I don’t know if Don would agree with me. I’m anxious for him to actually get to try the machine for himself.


March 24, 2005

Today’s group class started out with a word association task where the four clients were to name words related to Easter. Then they put all the words on index cards and each client was given some of the cards. Next they’d go around the table and each client tried to say the following sentence: “I will put the (item read off an index card) in the basket.” The third task was a game that was a total floppy because the clients didn’t understand it. So the professor stepped in and tweaked it so that the clients at least got a little practice repeating a sentence about Easter, then game was cut short. Last, they played picture bingo using picture cards with 16 Easter related pictures on them. Everyone had a good time and got out some good words with little or no prompting.

P.S. Just as I was finishing up posting this, Don yelled from the other room: "Wake me up [in] ten minutes." A totally unprompted and nearly complete sentence! This is so awesome because they don't come often.


March 29, 2005

Don and I talked about his classes and we both agree that they aren’t going all that well this semester. It’s still worth the time and money to attend---especially since there is a long waiting list to get into these classes and should we drop out one semester, the likelihood of getting back in would be low. But in past semesters the students were more creative in their choices of therapies to try, they pushed harder, and they were more engaged with Don. One girl, for his individual class, seems to just be there for the grade which is something we’ve never had before in all the time we’ve been going to these classes.

For today’s tasks they repeated two from last week: the one where they showed Don pictures for him to build sentences with and the one I call the pretend-you’re-at-a-restaurant exercise. Added to these was another familiar task. They brought in a coffee pot and Don was supposed to tell them how to make coffee. But they gave him too much help, in my opinion, filled in too many words for him. I know he could have done better, had they pushed more.


March 31, 2005

Today’s group class was a lot of fun for the clients. Don and “T” seemed to have found a way to communicate with each other with facial expressions that have them both laughing at each other a lot. And “V” got so excited every time he’d get out a word and that it was fun to see. He’s really improved lately. His wife was getting trained on the Lingraphica and was not there today.

The first task was word retrieval about Easter---who they saw, what they ate, etc., etc. The second task was a complicated game that was too hard for the clients to grasp so the professor stepped in and simplified it. It was kind of funny that “T” kept yelling out the answers when it was either Don and “V’s” turn but when it was his turn, he couldn’t always say what he had to get out. The third task was twenty minutes of “go fish.” The clients got a lot of opportunities to do their repetitive sentences of “Do you have______” and “Go fish” but the girls somehow screwed up making the game cards and no on got any bingos. They got their candy prizes anyway.


Silent Cry

“A complete sentence, please!” I say
And I see it in his eyes
A promise on a wing
But the words can’t make it to his lips
They are lost
And yelling, “Which way is out?”

I scream back!
Silently of course
“Go around the aphasia,
Crawl underneath apraxia!
Don’t be shy---
Come out COME OUT, wherever you are!”

My silent cry echoes between our eyes
But his words are lost
Like a little lamb in the forest
Waiting in fear
For the wolves of night to come
And rip its belly open.

I see him here beside me, but he is gone
Like the words, words, WORDS!

Jean Riva ©


April 12, 2005

I haven’t written anything for the classes on the 5th and 7th because there just wasn’t much new going on. Today’s individual class was interesting because I happened to be alone in the observation class with the professor. I’m not sure if she sensed that I’ve been a little disappointed in the classes this semester or if she started her talk because the opportunity just presented itself. Either way, she told me that they had paired Don up with two of the shyest students because they thought he would help draw them out of their shells. And with the one girl from Malaya the professor was very pleased at the changes in her. She (the student) quickly learned proper queuing techniques, is making wonderful eye contact now and is really involved with the patient (Don). I’ve noticed the changes, too. I was honest with the professor and I told her Don and I had talked about it and we thought that the semester was a wash for Don. The professor answered that this is the nature of a teaching college---that they never really know which students will blossom out and be good with the patients until they actually get to try out what they’ve been learning in the classroom. She also said that Don is really good at getting all of the girls in the department to open up and be natural with the patients. He is, too. He doesn’t let anyone be a wall flower in the waiting area.

The second part of the hour session today was spent training Don on the Lingraphica and I am now getting excited about it. (I was wavering a little after reading another post in this forum.) Don picked up quickly on the technique of retrieving sentences and clicking on them to hear and read them, and then he’d say them out loud. And he COULD say them out loud! I think he’s going to be able to navigate the little laptop just fine to self-tutor and to build communication. The professor said we’ve only seeing a 10th of what that machine is capable of doing and she is strongly recommending it for him. She thinks it fits his needs to a tee. I had checked out other systems on the internet and I even got a couple of samples of aphasia software to try out, but this one still seems the best for Don with his severe apraxia and aphasia.

April 14, 2005

Instead of me being in the group speech class with Don today, the two student teachers trained me on the Lingraphica. It has a lot of pre-programmed sentences in it, but for customized sentences, I would be the one who would program them in. It was pretty simple to do, but very time consuming because you have to find pictures for each word. For example, I was building the storyboard/sentence of, “I want help with my socks” and for the word “socks” I had to first click on a picture of a house, then in a bedroom on a floor plan diagram, I clicked on a closet. In the closet were pictures of all kinds of clothes that could be retrieved. Some words are not in the vocal part, so you have to also program them much like you would record an outgoing message in an answering machine. The system has room for 2,000 sentences and you can organize them into folders by topics to make them easier to for the patient to find.

The system’s pre-programmed sentences are organized in groups of ten by categories like: bathroom, doctor’s office, garage, etc. You can customize sentences, too, to add into the pre-programmed categories. In theory, a patient with aphasia would practice reading and speaking the difference categories recommended according to difficulty. I also got a taste of some of the advanced therapy exercises in the system that Don would not be using for a long time.

After my hour, then Don came into the treatment room where he practiced setting up the Lingrapahica (plugging it in, connecting the mouse and power cords, etc.) and turning it on and off. That didn’t take up much time and the bulk of his practice session was spent on him retrieving sentences, saying them with the machine. He did really well, especially for someone with zero computer skills before his stroke. All of the functions done by the patient are mouse functions but the mouse is a little different from a standard mouse---larger with an oversized tract ball and a button that stays down for dragging, if you can’t do it the standard way. He was able to self queue sentences, using the machine, saying them out loud with the voice of the machine. He could repeat certain words that were giving him trouble by clicking on its picture to repeat individual words as many times as he wanted. It was amazing to hear his voice pace out the sentences in a natural rhythm. It has four speeds, and it was set at the third level.

All and all, I’m looking forward to our two week trial at home. And if the works out, the professor will sign off on it then we’ll get the doctor’s order and we’re on the way to owning it!


April 19th 2005

Individual speech class went good today. The students did well with their queuing techniques and with Don’s ability to build sentences with the picture cards, I could see improvement. He even did two of the ten cards without any queuing at all!

One funny thing happened, though. During the second half of the hour he was getting more training on the Lingraphica and one of the sentences was suppose to be, “I need help with my shirt.” Well, Don couldn’t say ‘shirt.’ It kept coming out as sh#t which, in that setting, embarrassed the heck of out him. After letting the machine queue him a few more times without success, one of the students tried. Both girls did an admirable job of holding a straight face and trying to tell Don it was okay. Yadda, yadda, yadda. But those of us in the viewing room were cracking up with each, “I need help with my sh#t.” It’s getting near the end of the semester, so the viewing room was standing room only. They have to get so many hours of viewing to graduate. One of girls remarked that she’d viewed Don last semester and she was impressed by his improvement.

After class we had to wait for another client to train on the Lingraphica because we needed to take it home with us to start our at home part of the trial. Several of the students hung around in the waiting area with us to keep up company. It was late in the day and their classes were over, so this was really nice of them. This is one of the perks of going to the college program for speech---all the interaction with young people who are eager to try out the things they are learning in books. One girl said Don doesn’t even need language because he’s go good with facial expression and they taught us some sign language.

At home, I played around with the Lingraphica for over an hour, trying to program new sentences into it. Some are easy, but if there isn’t a built-in picture to come up for a certain word you want to use, and you have to go looking for a picture that will fit and that is so time consuming! I also couldn’t figure out how to record words, even though I did it last week in class. I’m going to have to sit down and read the manual.

Don did better than me. His job is to learn how to set up the machine, turn it on and bring up the correct storyboard to practice sentences, then turn it off and put it away---all by Thursday when we go back. He could do it all pretty well by the end of our hour of homework. I’m not worried about him catching on. The jury is still out on me.


April 28th, 2005

Today was the last of Don's speech classes for this semester, except for next Tuesday when we get the results of the individual testing that was done today and the discharge party.

While I watched from the observation room, I couldn't help compare this testing day to the one done the first day of the semester. And, boy, have the girls improved over this semester! They were professional, didn't grop around for the how-to of doing testing, and they only screwed up a few times by queuing Don for answers. (For testing purposes, queuing would not be allowed in the real world where the amount of improvement made, or not made, is the difference between getting insurance coverage, or not...at least this is the way his previous speech therapies all operatored when they'd do those every six weeks testings.)

Don whipped through the tests and appeared to me to have made some good gains from the first of the semester....I won't know for sure until Tuesday though. They finished early so the professor took over saying she wanted to step in the field for a little while. She took Don through the Boston Naming Test again. She was trying to teach him how to slow himself down when he is stumping over syllables. I know he knows what she means and I'll have to reinforce that at home when I see him doing it 'cause he always makes joke gestures when that happens.

She then called me into the treatment room for a report on how he is doing on the Lingraphic. We've decided to go for it, so she'll take care of her end before the party at which time we give her back the trainer machine to sent back to the company, and they'll send us a brand new one. They take care of all the insurance billing issues, too, and getting our doctor's prescription, etc.

At home, Don's branching out from just practicing with the storyboards on the Lingraphica that I've constructed to learning how to pulled down catergories of words to practice on his own. There are 2,000 picture/word combinations so it's going to take time for him to be able to pick out words at will and contruct his own storyboards...but that is one of the goals. He can't write because of the apraxia, so traditional writing or typing out a sentence is not possible. I'll update this thread on how he's doing on the machine once a month through the summer. Three of us from group speech class, who have wheelchair bound husbands, are getting the guys together once a month for cards, so I'll update then as two of us couples will be using the Lingraphicas.


May 4, 2005

Today was the final day of classes at the college speech pathology department’s clinic. It wasn’t actually a class. It’s an evaluation session where they discuss the progress over the semester, followed by a discharge party. The parties are fun. The college provides a luncheon and all the students take turns telling something that they learned from the clients and they also tell what their plans are for the future. Here’s a few of the comments the students made: 1) “I learned you have to be flexible when working with clients.” 2) “I learned how important it is for the clients to carry their speech lessons over into their daily lives.” 3) “I learned that it’s important to get to know a little about the client’s life.” I wish I could remember more but there were too many and I didn’t have my note pad.

During Don’s evaluation session, it was a relief to know that he’s being recommended to be a returning client. I always hold my breath on this part….he’s the only client they have whose been going there for four years. (All but one of the other clients have been going there under two years.) Don’s ‘verbal expression’ tested better from the first of the semester and they recorded some three word spontaneous phases out of him. For ‘social pragmatic communication’ they girls wrote down that “Don’s sense of humor was helpful in therapy and he was generally socially appropriate”---Not sure I agree on that last part. He got scored high in “cognition’ and in ‘auditory comprehension.’ The auditory comprehension really struck a note with me because at the end of his very first semester his auditory comprehension was fairly low.

It was a rocky start to this semester, but in the end we got enough positives out of it to make it worth our time. Over the summer Don will be working an hour a day on the Lingraphica, six days a week, and we made plans with “V” and “T” and their spouses to get together once a month for cards. Don and these two guys had a lot of fun in group classes and I’m hoping we can all become social friends outside of the college. I don’t really think that will happen, though. The two other couples have an awful lot in common and I can see them bonding well, but I’m not sure it will happen for us and them. I’ll update this thread with Don’s and “V’s” progress (or lack there of) on their Lingraphicas after our three summer card dates.


May 26, 2005

From time to time, I'm planning to do a summer update on this thread to record Don's experiences and progress (or lack there of) on the Lingraphica communication device.

It got delivered last Friday, but we've been so busy that I haven't had a chance to start customizing it until this morning. That was not exactly fun! It's a slow progress to find pictures to go with every single word you want to use. The system has more than 5,000 words and phrases already represented with pictures and those are easy to find---just type them in and the pictures appear in a storyboard. But specific words like the names of people and places, animals, etc. I had to put in with a re-named picture that can represent the word in the storyboard; every word MUST have a picture, not just typing. For example, I was trying to use the word "snowplow" which isn't in the system, but the closest picture I could find was a pickup truck that I renamed to 'snowplow.' At one point, I kept making a stupid mistake in the progress of recording a word vocally, so I called techical support. I got through in less than a minute toll free, a nice surprise. Once the storyboards are customized, I won't have to do them again in mass, just add or delete as needed. I've got other folders to create storyboards in but I'm burned out right now.

The sentences that I got into storyboards today are in a folder of storyboards labeled, "Biography." These are the things that Don tries to say to strangers where every we go and that I end up having to say instead because he'll only get one or two words out per sentence. God, I hope someday he can say these things for himself! He'll start practicing this afternoon. What he does is open up a storyboard which contain one sentence represented in both pictures and typed words. He is first to listen to the sentence, then try to say it on his own. If he can't then he can listen to it as many times as needed. If only one word is giving him trouble, he can click on that one word to hear it over and over and say it with the machine. The voice on the machine has four speeds and we might have to adjust that a little to be sure it's paced right for where he's at right now. Keep your fingers crossed for us!!!

1) My name is Don
2) I grew up in Rockford
3) I live in the north end
4) I was a die maker at GM
5) I had a snowplow business, too
6) I plowed snow at the 28th street mall
7) My wife is Jean
8) I have three brothers
9) I hunted out west
10) I hunted elk, antelope and mule deer
11) I had a stroke five years ago
12) Doctors said I would be a vegetable
13) I fooled them
14) We built a wheelchair accessible house
15) I go to speech therapy at the college

June 17, 2005

We had two couples over last night that we met in our group speech class, to play cards. We haven’t seen them since classes ended. Both guys have severe aphasia, like Don and are in wheelchairs. Gosh, those guys were happy to see each other! That alone made the night worth planning and cleaning house for and what surprised me was that I had a good time, too. I think we all did.

The evening reminded me that I should update this thread about Don’s experience with the Lingraphica. First I need to say that “V” (one of the guys who came over) got a Lingraphica at the same time that Don did and we four (me, Don, V and his wife) all trained on one at the same time on during speech classes. So naturally the topic came up of “how are you doing?” Well, it seems that the other couple hasn’t touched their machine. She can’t figure out how to program in the customized practice sentences! She doesn’t have any computer skills---not that you need a lot for this machine---and she hasn’t called their support line for help. Hopefully, she’ll call and have their tech guy walk her through the steps.

Don, on the other hand, has over a hundred practice sentences in his laptop in addition to the practice stuff pre-programmed into it. He’s been doing an hour per session, about four times a week. I’ve been trying to nag and bully him into working on the machine six times a week, but so far I’m losing that battle. Is there progress in his speech? I’m pretty sure there is. In day-to-day life he’s getting out more particle sentences---two and three words strung together. Nothing major, but several a day. He’s even getting out one or two full sentences on his own every day like, “Turn it on" and "I don't know.” And queuing him for full sentences seems to be moving along faster. Like all of us dealing with speech issues, it’s often hard to judge progress because we’re with our spouses so much.

The six of us all getting together next month for cards again at one of the other couple’s house, so I’ll update again then.

NOTE: Part 4 of this diary is the last of the entries that I've moved to another site to protect them from getting deleted off a message board for being old. For classes Don's had after this, they are mixed up in my archived entries in this blog.