Lunch in Aphasia Land

It was a cold but sunny and beautiful day when we backed out of our driveway. Destination: out for lunch and to the post office. I asked my aphasic husband where he wanted to eat and as he often does he replied by using hand gestures to indicate the turns I’d have to make on the way to wherever it was he wanted to go. Those turns with varying lengths of straight-aways all gestured with appropriate sound effects for braking and speed didn’t help me understand. I named five or six of our favorite places and each time he’d say ‘no.’

“Have we been there in the last week?” I was trying to narrow down the field of choices.

"No."

“Have we been there in the last month?”

"No."

" In the past six months?”

“Yes.”

Oh, great that helped a lot. “Oriental?” I asked and I got a ‘no’ in return. The same negative response came for pizza, steak, Thai, breakfast, and hamburgers. At this point Don drew the type of food he wanted using his finger in the air.

“Square food? Toast with bacon and eggs?” I asked completely baffled by this latest clue. “Am I going the right direction?"

“No. Yes. No. Yes," he kept repeating. You'd think after all this time I'd learn not to ask more than one question at a time.

“Fine,” I replied. “We’ve got a full tank of gas. I guess we’ll get there before dinner." I was headed for ‘restaurant row’ a place where there are million places to eat within a five mile stretch. Eventually he gestured for me to turn into a shopping mall.

“Pee,” Don said which translates to: “Find me a place around the back where I can use my urinal.”

“Not today,” I said as I turned in. “You’ll have to make an appointment for tomorrow. I have an opening at 4:15.” I always give him a hard time about his ‘pee’ commands and he usually laughs at my tired jokes when I tell him things like he’s reached his quota of pee times for that day or last call for peeing was a half hour ago. Once I told him there is a cork in the glove compartment, "Use it!" Sometimes I even shock myself with what comes out of my mouth. Around the back of the mall, I stopped near a sign post hoping if someone comes along afterward they’ll think the yellow circle in the snow came from a big dog with a bad aim.

I got back on ‘restaurant row’ where eventually Don directed me to turn into the parking lot of a Mexican restaurant. I thought back to the clue he was trying to give me with his finger drawing in the air. Square food? What do they have at a Qdoba's that is square? I finally decided that he’s finger drawing dyslexia and he meant to draw a circle for a taco salad which is what he usually orders. But in reality it’s not unusual for people with aphasia to come up with what I call false clues. In their brains they are searching for the right word or gesture but all they can come up with is a category of similar words, one of which is the word they are trying to communicate. Round, square, triangle---they’re all shapes and ‘square’ was the only word Don’s aphasic brain could express on Saturday when we had lunch in Aphasia Land. ©

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Accepting the Failings of Age and Disbilities

Today we went to the sight-in day for disabled deer hunters. The two year old program is run by a small army of volunteers who help people in wheelchairs get out in the woods during hunting season. They use specially made blinds and each disabled person is assigned two hunting guides who stick with them and are not allowed to hunt themselves. The group also puts on a weekend long deer camp where the disabled guys can all sit around doing guy things, something that is often missing in the lives of men who use wheelchairs.

Don went on the hunt both years and he was looking forward to going this year but today he didn't pass the gun safety test. Cognitive issues. After the three gun safety teachers made their ruling I had the job of telling Don. It was hard on the guys to fluke him. They all like Don a lot but it's not fair for him to tie up two guides and a blind in the woods if he's not going to hunt. They have a waiting list to get into the program because they can only take 30-32 hunters into the program.

On the way home, I asked Don how he thought he did on a scale of 1 to 10 and he said a five. Then I asked him if he would be surprised if I told him that he flunked the safety test. He answered, "Don't know." He took it pretty good when broke the news---sad, of course---but he's always been a stickler for gun safety so I was able to use that fact to explain it to him so he could accept it. I told him that he's hunted a lot of years with a good, clean record and it's better to leave the sport that way than to take a chance on marring that record with an accident. He got two bonus years after his stroke that we never would have dreamed possible and I told he has to celebrate that fact.

It hasn't been a happy evening and it won't be a month filled with anticipation like it's been the last two September/Octobers. But he does have a consolation prize. They asked me if I'd like to volunteer at the deer camp so Don can come along and hang out as the hunters and their guides come in and out and at after dark for the bonfire and dinner. He seemed to like that idea today but who knows if he'll feel the same way tomorrow or the next day when this all sinks in. I'm a little worried about depression catching up with him someday as little chucks of his freedom and personality get chipped away like this. Of course I say this every time there's another little loss like this but somehow he manages to keep getting up every morning happy and singing at the top of his lungs. How does he do that---find acceptance of the failings age and serious disabilities? ©

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Life Goes On......

Life hasn't changed much for us this summer. Don is still happy and singing the words "Jesus loves me" and "boom, boom, boom" over and over again each morning and sometimes in the afternoons. Recently I told him if we were sharing a room in a nursing home I'd ask for a room change. He laughed and for the next hour he sang the scales using just the syllable "la, la, la, la, la, la, la." He wants to talk. He can't, so he sings. So I use my ear plugs to keep my sense of humor from falling out of my head and to keep his happy tunes from getting in.

It seems a little weird not to be in back-to-school mode i.e. for Don to be starting speech therapy classes now that the colleges are in session again. We could actually go back to group class but with Don's hearing loss making it so hard for him to know what is going on in large, noisy rooms it would be a waste of time. And individual classes are not available to him anymore. He's not unhappy about it, though. Every time we go past the college Don hums the "Pomp and Circumstance" graduation song with much gusto and volume in his voice.

I've been very active on the political sites the last few months---like a crazed lady debating other crazed people out there in cyberspace. Don and I used to enjoy the political back and forth each election year but now it's just me venting to him and him agreeing with me. I tell him what the buzz is in cyberspace and he seems to enjoy living vicariously through me as I have all the fun. If I'm especially upset over something or on an extra high, so is he. It's kind of nice having this tiny connection with the past and how we used to like to talk politics late into the night.

We're lucky that we've been able to get out every other day all summer. The local Starbucks people know us as Mr. and Mrs. Caramel Macchiato, Decaf Coffee Tall. Even the puppy gets to go there and get a tiny cup of whip cream. He keeps his blog up better than I am keeping this one up. If you ever wonder what happened to us, check the dog link in the right hand column and he's sure to have something to say about life on the Planet Aphasia. ©

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Mid-Summer Update

We went out for pizza with old friends last night which was both a happy and sad time. Happy because it's always great to see old friends but sad because it accentuated yet another growing post stroke problem---Don's isolation. His ability to stay focused on our group and participate in conversation was severely hampered by the hearing loss he received last fall at the Disability Deer Hunt Sight-in Day. A volunteer helping Don didn't make sure he was using ear plugs so now in places where there's a lot of background noises, he can't follow the thread of conservations. Even without background noises it can be a challenge requiring me and others to repeat things three or four times. Part of that is aphasia/language processing issues from the stroke but most of it is that damn hearing loss. The audiologist says there's not much you can do about that type of hearing loss because it's to the center nerve and turning up the aids only makes the background noises all the more annoying.

It's sad because the stroke itself robbed Don of so many opportunities for social interaction like not being included on house party guess lists because the location aren't wheelchair friendly or because old activities we used to do with other couples are no longer a commonality that bind us together. Since the sight-in accident Don can't even successfully "talk" on the phone anymore. In the past he used to enjoy listening to friends and family talking about their lives. Now, he ends up putting the phone down about half way through the call. Thankfully, he seems to be handling his growing isolation fairly well but that doesn't stop me from feeling badly for him. He used to be so engaged with people both before and after the stroke until recently. It's like watching a falling star and holding your breath knowing eventually it will burn out.

But we're keeping busy, almost too busy for my tastes. We're out of the house every afternoon doing what we can to enrich our lives---shopping, going to local parks and free summer concerts, going to restaurants, art shows and the YMCA, giving the new puppy playtimes and taking him to obedience classes. It's easy to keep busy in the summer.

I'm taking two aquatic pool classes when I can fit them in. One is jazz dancing. The instructor actually incorporates dance steps from all the decades of my life and they bring back some great memories, listening to the music that goes with the exercise. The instructor for the other class combines boxing, kick boxing, cross country skiing and belly dancing moves. When I get finished with that class I'm energized and ready to take on the world. Where's my Wonder Woman costume when I need it? I could wear it home and feel like I'm appropriately attired. But as the day wears on my aches and pains remind me that I'm still an old woman. Such is life. We dream of Nirvana and even achieve it from time to time then we slip back to where we began leaving our Zen living-in-the-moment pleasures behind. ©

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Disabled Heart

It's easy for me to forget that my husband is disabled. Despite the wheelchair and his language disorders, in many ways Don is the same man I've known since 1970----good-natured, compassionate, kind, smart, and out-going. It's the out-going part that gets him in trouble once in a great while, now that he appears severely disabled to strangers. Okay, I admit it. He IS physically disabled but not mentally impaired. Why do some people assume if you're in a wheelchair you lack a few too many IQ points?

Sometime happened tonight at puppy socialization class. As we were getting ready to leave, Don wanted to roll towards to a woman in her mid-thirties. He's never met a stranger he didn't like or want to talk with. It's how he was pre-stroke and still is post-stroke. He got within eight feet of the woman as she was walking towards the door. He tried to get her attention with his voice. I don't remember what he said but it was something like, "Ah…" and he raised his hand. Mind you they were still a good eight feet apart. In a loud voice she sternly said, "You will NOT grab me!" and she walked off leaving me stunned and Don wondering what happened. His hearing is not good but he saw the hostile look on her face and the startled looks of a few others who overheard her harsh words. I've been with Don every single second of every single one of these classes. I know she wasn't reacting to anything he had done tonight or in the previous classes. That was the closest in proximity they'd ever gotten to each other. In fact, it was the closest in proximity he's gotten to anyone in the class. We all sort of spread out to keep our dogs apart while they are on their leashes.

We talked about what happened on the way home or I should say I talked and Don listened. The best I could come up with is that she had had a bad experience with an old person in a wheelchair in her past and she felt sufficiently fearful of all old men in wheelchairs that she over reacted to a perceived advance on her personal space---despite being in a room full of people. Whatever the case, I'm glad that 99 people out of 100 react differently to Don than this woman did. Most people are kind and accepting but, of course, it's the ones who aren't that can bring you down. They take up entirely too much time in your thoughts. Look at me; I'm blogging about the split second it took for a woman to say five words!

I was telling a stroke survivor friend of mind about this incident. She doesn't use a wheelchair but has the 'stroke gait' of someone who's recovered from one-sided paralysis plus she has no use of one arm. She says she occasionally gets the treatment that says you're-physically-disabled-so-you-must-be-mentally-impaired-too. If you knew my friend, you'd know she's anything but. As a spouse and a friend to people who are hurt by that kind of unfair judgment it makes me sad. It makes me mad. It makes me reaffirm my belief that it really IS important to keep taking my Ambassador from the Planet Aphasia out in the community. When people take the time to get to know post-stroke Don he leaves a wake of friendly acquaintances behind. Just yesterday a waitress where we go often told him he's her sweetest customer. Another waitress where we go for pizza once a month never fails to give Don a couple of hugs before we leave. Most people like him or, at least, are compassionate in their dealing with him. He may not be able to help educate everyone about stroke survivors with language disorders---like the woman from the class tonight---but on the chalk board of life Don's got more marks in the 'win' column than in 'lost causes' column. ©

P.S. A friend of my wrote a review/article about a newly released computer game, AudiOdyssey, that is accessible to visually impaired, blind and mainstream gamers. I thought I'd share a link to the article here since so many stroke survivors have visual problems. I've read posts from a few survivors on support sites saying that an old Wii game (which is similar) has helped them with cognitive issues and motor skills. Click here to read the review.
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Stroke Anniversary Number Eight

May 21st, 2008 will be the eighth anniversary since Don's massive stroke, a stroke that changed the direction of our lives as strokes do for most people. This year, to celebration the fact that my husband beat the prognosis of two neurologists and is far from being “a vegetable for the rest of his life,” as they predicted, I'm planning a day trip to Lake Michigan. There's a quaint tourist town on the eastern shoreline that we've both been going to since we were kids, long before we even knew each other. A ship that once took me on my high school class graduation trip is docked there, a maritime museum now. For some reason it gotten smaller as the decades went by. I can't imagine spending a week in one of those tiny cabins now, especially with Don's wheelchair in tow. Perceptions changes over a lifetime. Back then, I thought we were traveling like the 'upper crust' of society.

I suppose some people think it’s strange to celebrate a stroke anniversary, but it could have been so much worse and that ‘could have been but wasn't’ is really what we celebrate. Yes, Don is still wheelchair bound and can’t say more than a handful of unprompted words but he is cognitively almost back to his pre-stroke days and we can still find meaningful things to embrace and keep us busy from day to day. But more than any other benchmark, the stroke does not take center stage in our lives like it did in the first few years when therapies, changing priorities and goals, and downsizing our lives filled every waking moment. We arrived on the other side of the firestorm several years ago, rebuilt our lives from the ground up and now enjoy the fruits of our hard work.

I still visit the stroke supports sites from time to time but the strong connection I once felt there is holding on by a very thin thread. And that is a good thing in the recovery world. After all, it's the goal of any support group to help people to get their lives back on track and living in the real world again, however chanced and challenging that may be. When a member of a support group no longer needs to get or give advice or compare their battle scars the group has been successful in its mission.

One thing I still try to share with people new in the stroke recovery world, though, is the concept of acceptance. Some people mistakenly think that if they accept their stroke limitations---or those of their spouse---that it's akin to surrender and giving up. Nothing could be farther from the truth. Acceptance of what has happened gives you the power to fight your best fight for recovery. It's when people live in denial of their fallibilities or they play the blame game, mad at God and everyone else in their path, that they defuse their power because that denial and anger eats up an enormous amount of energy and time. Acceptance gives it back so you can redirect your resolve to places that will make a difference in the quality of your life.

Don and I have both worked hard over the past eight years to overcome "the vegetable for the rest of his life" prognosis and he's come a long way cognitively, physically and communication wise since the first few years out from the stroke. (Note: communication is more than just spoken or written words.) His ability to be good natured and happy despite his disabilities inspires people where ever we go. I'm proud of him and I think he is proud of me as well. Yesterday at the YMCA while we were both working out we were surrounded by young, healthy people Don looked at me with deep emotion in his smoky-gray eyes and said, "Me cool."

Those of us who live on the Planet Aphasia know that reversing relationships is common with speech disorders, so I pointed to him and asked, "Don is cool?"

"No," he replied and pointed to me while saying, "Cool" again.

"I'm gray haired, old and full of wrinkles and you're surrounded by beautiful young people and you can still say I'm cool?" I teased back.

"Yes!" he answered with gusto to which I gave him a rare public display of affection and then we went back to our workouts. Perception, as I said up above, truly does change as we march through our lives. When you're young and emerging into life I doubt anyone would label an old person working out in a gym as "cool." It's only through the grace of God, love and admiration for our fellow man that we learn to look past the exterior of anyone---disabled or not---and see the spirit within. ©

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