Are You Reliant?

If you want to feel old really fast get a new digital camera. At least the one I just got is making me feel that way. It came with not one but TWO user guides and some of the pages have such small print that I have to use a magnifying glass just to read them. Worse than that, the camera has a mode dial with tiny icons on it and without my handy-dandy magnifying glass I'd never know those little suckers are suppose to represent things like: portraits, night shots, indoors, landscapes, movies and a bunch of letters I've yet to decipher. It even has an icon for aquariums. Aquariums! Who needs that? What I want to see is an icon for starting my coffeemaker in the mornings.

My very first camera was a Kodak Brownie box camera that I got for Christmas when I was a kid. Brownies have very few moving parts---a shutter, a button and a spool to thread a roll of black and white film inside the glorified cardboard box. I still have that camera. And believe it or not, I've only had two other cameras in between that Brownie and my new Canon. One of those cameras was sold off last summer on eBay as an antique. That sale alone established me as having entered the realm of old-dom, but I already had my suspicions. Being old is like living in a parallel universe. You can function normally in the world but in the back of your mind you know that unlike most of the other humans moving about, you have no future. You only have today unless, of course, you like dwelling in the past.

Having just bought a camera that should come with a master's degree if you learn how to use all its functions, does it sound like I dwell in the past? No, but I'm not so sure Don, my husband, doesn't live back there. The other day we had one of those infamous 'conversations' that all spouses of aphasia and apraxia patients would label as what-the-hell-difference-does-it-make? He managed to get out the words 'employment,' 'Mrs.,' and 'house' plus the phrase 'long-long ago.' Two hours later of off and on again games of Twenty-One Questions I finally figured out Don was trying to say that a guy he had worked with and his wife came over to visit him fifteen years ago. He, of course, was thrilled that I cracked his coded speech but I was working hard to keep my weary brain together long enough not to blurt out, "What the hell difference does it make that you had company fifteen years ago?"

Indeed, what the hell difference DOES it matter what happened in the past? We can't go back there. Or can we? We can still day-dream about what was once upon a time and is no more. We can still buy 120 film to re-spool in Brownie box cameras. We can still capture life in black and white, but what fun would that be while everyone else is sending vivid color photographs around the world as fast as a mouse click? Dwelling on the past doesn't make us young again. It just makes us irrelevant.

I have a theory about what is missing the most in the lives of old people---goals. So I'm vowing to live long enough to learn all the functions on that new camera and Don has agreed to live long enough to fill all the slots in his new penny collectors album that goes up to the year 2020. Setting goals is a good thing. They make you do off the wall stuff like buy aquariums just so you can learn to take pictures of fish and to get pennies back in change to check.

Jean Riva 2009 ©

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Proposals on the Planet Aphasia

The first time---or maybe it was the second time---that Don asked me to marry him we were on a playground riding bouncing, pink elephants and not doing a very good job of it since they were designed for children and we were in our late twenties at the time. It was four o’clock in the morning. There might have been a little alcohol involved and we ended up staying up all night. Right from the beginning of our relationship, Don has kept me sleep deprived.

Another time in our early courtship that Don kept me sleep deprived started when we were standing in a line at a local movie theater with another couple. Don looked at his watch and said, “If we leave right now, we can get to Chicago before last call.” We all looked at each other and someone said, “Let’s do it.” As simple as that we hopped in Don’s yellow Chevy convertible and made the three-four hour drive ending up at the Playboy Club.

Then there was the night I got a call from Don well after midnight. It was hot; he couldn’t sleep and he wanted to go over to Lake Michigan with a couple of sleeping bags and sleep on the beach so that we could wake up to the sound of waves lapping the shore. We did it but instead of waking up to the sound of the big lake, we woke up to the sound of my little ten pound poodle, Sarah, warding off two Great Danes on their early dawn walk. They scared the heck out of us until we woke up enough to figure out what kind of ‘monsters’ had poked their giant heads down our sleeping bags. Gosh, those dogs sure ran fast once Sarah come shooting out from her brown cocoon where she'd been sleeping at my feet!

Back in those days it was easy to be carefree and impulsive. People often say that having children is what settles a person down and all but wipes out their impulsiveness. We never had kids so I can’t buy that as the sole explanation. For us, it was a combination of increased career/job obligations and growing responsibilities to help care for aging parents. It’s just part of the process: you’re born, you die and in between you march along a timeline as old as human life on earth. Now, some thirty-five years after Don and I first met, being carefree is sitting on the deck with a cup of coffee watching the moonflowers open and being impulsive is taking the scenic route home from the grocery store. We’re settled but in a comfortable, old slippers kind of way.

The last time Don asked me to marry him was the year after his stroke. We were living in an accessible apartment while I was getting his house ready to sell and I was also in the process of getting an auction organized at a large pole barn that he had rented for years. My house was sitting empty, waiting its turn on the sales block. I had been fretting about the high cost of my health insurance and we were having major cash flow problems. Don’s aphasia and apraxia, at that point in time, had his speech limited to a few nouns that often took as long as four hours for him to get out. So, by the time he finally got the word “marry” out I had no idea what he was talking about, how it related to what I had been talking about earlier.

“You’re merry?" I asked. "You’re happy?” which, of course, upset him because I misunderstood.

Besides the fact that it took me a while to recognize this single word proposal as a proposal, another thing that was different from the time he asked while we were riding pink elephants in the park was his reasons for asking. This last time, Don was asking because getting married would get me covered by his health insurance and pension plan. I don’t know why he asked that first time, but my answer was: “We barely know each other!”

Over the years between his first and last proposals, when ever people would press for a reason why we didn’t get married, one of us would repeat that line---we barely know each other!

Jean Riva ©

Computer art at the top by Nevit Dimen

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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The Aphasia and Apraxia Challenge for Caregivers

Yesterday Don and I had a half hour 'conversation' about something he really wanted to tell me but the only words he could get out during the entire time were: feet, baker, dad, and gone. And, of course, 'yes' or 'no' as answers to my questions. When my questions got too far off track to what he wanted to tell me, he'd repeat those four words as if saying them over and over again, with increasing the volume, would bring me perfect clarity.

Those of us who routinely deal with someone with severe language disorders know that we start our guessing games with generalities, trying to pull out more details in hopes they will lead us where we need to go to understand what our care recipients are so intent on telling us.

"Is this about something you just read or saw on TV?" ---- No.
"Is this about your dad?" ---- No.
"Is it about someone you know personally?" ---- Yes
"Relative?" ---- No
"Friend?" ---- No
"X-coworker?" ---- No
"Neighbor?" ---- Yes

Thank God, we had a meaningful clue! Then I listed all the places Don had ever lived and found out that the neighbor was from his childhood. I did a mental groan because the stories from before I knew my husband are harder for me to pull out of him than the stories from time frames when we have some shared memories. But he is stubborn and so am I and I've learned since his stroke that there is no way we're going to avoid this aphasia/apraxia driven dialogue. So I sat down for the siege, knowing nothing in the world is more important to Don at that moment that getting me to understand the connection between those four, tiny words: feet, baker, dad and gone. It was at that point that Don did a gesture with his hand, like drawing a knife across his feet and he repeated the word: gone.

Over the half hour I was able to figure out that a neighbor kid of his from when they were both approaching their teen years was held down by one guy while another axed off his feet. Don somehow knew the people who did this to the kid and he told his dad which resulted in the bad guys getting hung. Why this story was on Don's mind is still a mystery. I asked him if he saw something on TV that reminded him of the event and he said, "No." I was afraid to dig too deep into whys and wherefores for fear it would take another half hour to figure it out. But I was curious. I still am and if his brother was in town I'd probably call and see what he knows about the story.

It occurred to me afterwards that if Don had told this same story in his pre-stroke days he would have drawn it out with rich details and made the story last the same half hour that it took to tell it now in his post-stroke language disorders way. He was a gifted storyteller with a million stories like this one and he hasn't lost the desire to share them. The difference, though, is that now the 'listener' does so much work to draw the bare bones of the story out that it's mentally exhausting. All of us who have been there, done that know exactly what I mean. ©


P.S. Some of you might remember that I entered a writing contest a while ago that had a $5,000 prize. I didn't win---didn't really think I would---but here's a link to the article I wrote for the contest. I'm proud of the way it turned out. Disaboom: a Web Company Making a Real Difference to People Touched by Disabilities.
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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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Routines in Caregiverville

No, I haven't fallen off the face of the earth. Don, me and the new puppy are poking along as usual, trying to establish and keep to a schedule for summer.

We've never been good with keeping old people hours---you know those people who are up with the pre-dawn glow and go to bed soon after the mauves, purples and butter creams of the setting sun give way to night. I both admire and hate the early risers. I could never willingly do that. Even so, since Levi came into our lives I've been getting up each morning at 8:00 sharp without using of an alarm clock. And after he gets his duty done outside, I write or cruise around the Internet until 9:30 when Don rolls out of the bedroom, fully dressed except for one sock and singing his happy aphasic greeting to the world. We then have breakfast together and get our showers in before noon. This is our post-puppy morning routine.

I love my first hour of the day for its whisper quietness. There's no TV screaming out at top volume to compensate for Don's hearing loss, drowning out the sound of the birds drift in the window. There's no singing of random or made-up words coming out of Don. That first hour of the morning I am all alone with my thoughts, my keyboard and sometimes when I feel like making it, a good cup of coffee. Quiet is a rare commodity in my life, especially now that we've added puppy barking to the mix. We know now what they mean when they say schnauzers 'talk' to you. Levi's got the play-with-me bark. The look-at-me-I just-learned-something-new bark and the bark that says, "I think I'm supposed to do this when I want to pee." He also aspires to herd birds so he's constantly barking at them. The trouble is I still can't tell his barks apart but I'm learning. Cooper barked once in his last year of life and it literally shocked me because it was such a rare occurrence for him to do that.

Routine. We are falling into a summer routine that gets us out every afternoon for lunch, errands or appointments and back home again an hour before the nightly news. Then Don takes a nap, Levi plays and I do a few household chores and by dark I'm ready to settle down in front of the computer. Egads, I've turned into one of those predictable persons! If it's Tuesday this must be swimming class. If it's Friday it must be time to recycle and eat hot dogs by the dam. Routine is good, though. At our ages, being without a routine means either we're in crisis mode or we've stacked our schedule so full it's humanly impossible for a woman with a bad knee and a man in a wheelchair to accomplish. A too full schedule risks us driving to Crazyville and crashing there so we can't finding our way back out. Yes, routine---boring as it might seem to others---is a good thing.

I've been writing a lot lately, working on my book about aphasia and apraxia and the 'joys' of caregiving. And I've been blogging for the dog quite often, plus yesterday I entered a contest with a $5,000 prize. That was an exciting day, being on the writers' forums as we all worked our way through the one-day-only submission process and the glitches that happen when a mass of people flood a website. Not much chance of me winning but it was fun to dream about it for a while, like buying a lotto ticket and dreaming big for a few hours. If it gets published, I'll post a link to the article. I'm quite excited about the discovery I made and wrote about and I want to share it with the stroke and caregiver community.

Speaking of sharing, if you or someone you know cares for a parent with any sort of disability check out Caring.com. It's a great site with lots of caregiver resources. I no longer care for a parent but a lot of their resources works for the spouse-caregivers as well. ©
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Life is Perfect, Even When it's Not

This is a blog entry from a few years back that I had at a different site, but it fails to open half the time so I'm relocating it here.

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At the dentist office today, I took my wheelchair bound husband, Don, to the restroom. It’s a good one with grab bars situated so that he---with my help---can stand up to pee. But first we had to get him out of his coat. Its nylon and is so slippery it would be like holding on to slime, should I have to catch him in a fall. That task accomplished, I got Don’s pants down and held his shirt out of the way while both of us stood side by side waiting for the flow to start. It didn’t. So, I’m singing game show tunes in my head---the kind they play while a contestant is trying to come up with an answer while the clock ticks away. For some reason the wait seemed longer than usual which made me think of our friend who has a ‘shy bladder.’ He can’t pee if someone else is in the room.

“Ron better hope,” I said to Don, “that he never needs help peeing.” Don got the humor in that statement which gave us both the giggles. We were giggling and laughing so hard by the time the pee stream hit the bowl, it’s a wonder it found its mark and didn’t cover our shoes instead. The restroom is just a few feet from the receptionist’s desk and heaven knows what she was thought we were doing in there. The look on her face when we came out was priceless. She wanted to ask. Oh boy, did she want to ask but her phoo-phoo manners wouldn’t let her.

As I sat in the waiting room while Don got his teeth cleaned, I picked up an old copy of Real Simple magazine. On the first page I turned to was a Ralph Lauren double-page layout for Polo Black, a men’s fragrance that featured a hot model. And I do mean sexy as in take-off-your-clothes-and-let-me-see-the-rest-of-you sexy! I looked at him, and then around the room trying to figure out if the Thought Police was present. I decided that a dentist’s waiting room was not a good place to have a virtual organism, so I quick turned the page. Thanks goodness, the next page was a double-page layout for a Chevy. Cool. Keep those cars a selling, we need their pension money. I flipped through a few more pages and came to an ad for Starbucks coffee liqueur which was exactly what I needed after lusting after the Ralph Lauren guy. I’ve never smoked but that guy had me reaching into my purse for a pack of cigarettes.

By now I was beginning to think that the Real Simple magazine was nothing but advertisements. Duh, aren’t most of them? And sure enough, the next page was a double-page layout for American Express featuring Ellen DeGeneres. She says in the ad that her life is perfect, even when it’s not. Wow, what a nice thing to be able to say about your life! I think I actually know what she means.

Finally, I came across a few articles in the magazine. ‘What’s the Craziest Thing you ever did for Love?’ was the title of one article, and there were some notable answers like: “take skydiving lesson,” “move into a log cabin built in the 1800,” and “eloped 36 days after meeting someone.” Another article was titled, ‘Portrait of a Family.’ There is humor in this, I thought about finding these two articles, because my family portrait and the craziest thing I ever did for love could be one and the same. Yup, I’m getting out the oils and easel and painting a portrait of Don and myself. We’ll be standing side by side, leaning over a toilet bowl, expectantly looking down and hoping that neither one of us ends up with pee our shoes. Love doesn’t get much crazier than that, does it?

Jean Riva ©

Postcard: Park Kiss, circa 1900
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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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We're Training at the YMCA

Life has been busy in the past few weeks since my husband and I joined the YMCA. They've got him on a three day a week program of weigh training for his left arm---his right one is totally flaccid with not an ounce of movement. And he's doing a series of standing and sitting from his wheelchair, using a weigh machine to pull himself up. While standing, every third time he tries to stand on his neglect leg (right) for a few seconds. Supposedly this will to help wake up the nerve endings. Already, I can see an improvement in his transfers in and out of his wheelchair. This winter after his aorta aneurysm surgery it was taking as many as fifteen tries for him to stand up enough to transfer and today he did it several times on the first try. Strong transfers can make the difference between staying at home or going to a nursing home so this is a worthy goal, believe me.

Don is walking some at the YMCA, too, and also working on leg exercises---some of which are trying to wake up the muscles that can help him kick his right leg out and up. When Don was in physical therapy last fall, they isolated the muscle groups that aren't working for him so those are the ones we're hoping to fire up now. All the "normal" people coming and going from the Y are encouraging and positive to Don as they pass by. It's a heart-warming and upbeat place to go.

When Don finishes up his routine, I leave him at the Y's coffee shop and then I go do the bike or treadmill for fifteen or twenty minutes. The original plan was for me to do the swim classes on Tuesday and Thursday, which are early in the morning before Don gets out of bed. (I loved those classes when I took them last summer.) But so far, our weekly schedules have been so crazy-busy that it just hasn't worked out that way. That will change soon. At least I hope so because I just signed us both up for a sit-and-fit group class, also at the YMCA. It will probably be a little low key for me but I have to be there with Don because of his language disorders, so I decided I might as well take it too. It's an opportunity for him to interact with other people with physical limitations which I figure will be better for him than the exercise.

On the speech front: A month or so ago I mentioned that Don---for the first time since his stroke 5/21/2000---spontaneously tried to spell a word he couldn't say. This past week he couldn't say 'celery' and I ask him to write it and he was actually able to do it without any help at all, misspelled but still recognizable. His language is still mostly nouns-only with a very few two and three words phrases thrown in and virtually no written abilities, not even the alphabet. The professor who oversees the speech group we're still going once a week recommended working on writing, since Don's brain seems to be ready for it. So we're back to doing homework at the kitchen table again.

There you have it, the reason why my real life is taking time away from my virtual life. ©
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Old Dogs Can Learn New Tricks

People dealing with aphasia and apraxia will understand my excitement at having my husband finally---for the first time since May 21, 2000---try to spell a word that he couldn't verbalize. It's the first time he's done that. It always shocks me when Don comes up with something new like this. The brain really is a mysterious place where spontaneous healing can happen. After he did that, I recognized right away that this could be an important break-through so I tried having him write the word on paper. It didn't work. He could only write half the word, just like he could only spell out half of it with his voice. Then I had him write my name on paper. And he could do it! The only word he's been able to initiate in written form until now was his own first name and that took five years for that to happen. This week he added my name to his list of written accomplishments. How cool is that!

After his group class at the college on Thursday, I told the speech therapist/professor about this new development. She agrees we need to start trying to build on the change that appears to be happening in Don's brain. So it's back to doing homework at the kitchen table again. This time we'll be working on spelling and writing.

Plumbing 101: Aphasia Style

We hear about the stroke survivors who have anger issues when dealing with speech problems, but we don’t often hear about the caregiver/spouses with anger issues.Well, I have them in this household. Not often, but once in a while the angry out-bursts come out of me from seemingly no where and when I least expect them. It feels like menopause all over again.

Last night I was working on the computer when Don wanted me to come in the bathroom. Right Now! Major important! Emergency! Everything is an emergency on the Planet Aphasia.

"Okay, the toilet is temperamental," I was thinking on my into the bathroom, "and it’s either plugged up or the chain to the flipper do-hickie is off its ring again." But after a short examination, I found out that both of these things were just fine. No real or semi-real emergency. No visible problem.

Don pointed down to the turn off valve that goes to the toilet tank. Then he gestured with his hand in a turning pattern and said, “Eeekkkk!”

“Don,” I answered, “The water IS turned on.”

“Eeeekkk,” he repeated.

So dutiful wife that I am, I turned the valve off, then flushed the toilet to demonstrate that the toilet tank will not fill up when the water is turned off. “Is this what you want?” I asked. “Why do you want the water off?”

“Eeeekkk,” he repeated more forcibility and with another hand gesture that was rotating in the opposite direction. “EEEEeeeeKKKKK!”

So dutiful wife that I am, I turned the water on again. Then I ran my fingers all around the valve and reported that it wasn’t leaking. “Did you see a leak?” I asked. I got the rotating hand gestures and sound effects again for an answer.

For the next fifteen minutes the valve went on and off a million times and the toilet was flushed repeatedly. And all I could get out of Don in the way of an explanation was that sound effect that was starting to grate on my nerves like fingernails on a blackboard. (And, boy, does that saying date me!)

It was at that point that Shrew-Lady took over my body and she started yelling that she’s going to sell the house. She hates toilets, and she hates plumbing problems. She threw in a few swear words and her tantrum was starting to make my blood pressure rise. Recognizing that out-out-control feeling, I knew that Shrew-Lady needed to leave. So I grabbed her by the arm and we marched out of the room. I threw my head back over my shoulder and told Don, “I don’t want to see you or hear you for half hour. I’ll be in the time out chair!” My sense of humor was coming back.

A half hour passed and like clock work, Don and his wheelchair came rolling up beside me and he said, “EeeeeeeKKKKK” with a hand gesture rotating one way, and then he did a short rotation of his hand in the opposite direction. “Eeekk.”

My aphasia decoder ring FINALLY broke the damn code. “You want me to turn the valve on full force then you want me to back it down a couple of turns.”

“YES!” Then the kissy-face stuff started in as Don plastered kisses on my face and hair. It was his way of telling me that I finally figured out what was so all-consuming, damned important for him to tell me.

“Don,” I said with a deep sigh, “You forgot who my dad was. I already know that about water valves.”

“Oh,” says, and rolled away laughing.

Such is our life on the Planet Aphasia.

Jean Riva ©
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Excellence in Teaching

One of the professors at the college where Don had been going for speech therapy for the past six years just got an award for excellence in teaching. We were invited to see her "presentation speech" because, she said, the clients who work with her students are such an important part of the speech pathology department. I'm glad we were invited. It made me tear up in several parts when she talked about things like putting ourselves in the shoes of people with aphasia and apraxia and imagining what it would be like to have so much to say and not be able to get out anything out but the 'F' word. Teaching compassion along with the analytical aspects of being a speech pathologist is one of the components they like to stress on that campus, she said.

A year or two ago this same professor had done a half hour interview of Don and me to submit---along with other client/spouse interviews---to a project someone else was doing that involved creating videos to go along with text book material that future speech pathologists study from. She included some clips of those interviews in her presentation today. Don's and my clip involved answering the question, "What is the one piece of advice I'd give to future speech therapists?" I answered to treat their clients like they would anyone else they meet for the first time, to not talk down to them. It was interesting to see Don on the video when I said that. His first "yes" was a normal tone but then he repeated that "yes" several time with increasing conviction each time. Then the professor followed up with a question asking if that happened often that people talked down to him. I replied that many people seem to equate having a language disorder with being mentally challenged. Don, then punctuated my reply with a very angry, "Oh, yes!"

Excellence in teaching: in a big way, I think Don deserves an award for excellence in teaching. He taught many student speech pathologists that clients with aphasia and apraxia can have strong personalities underneath the disability. He still teaches this to the people he interacts with in the general population. And we were told today that part of that video of Don and me made the final cut to the text book project, so Don will continue to teach far into the future.

Jean Riva ©

Third Friday

We went to the fish fry at the old people's club today and as I looked around it occurred to me that the coffee waitresses were living in an episode of The Golden Girls, an old TV sit-com. The whole place was sit-com material. Three-hundred-and-fifty people lined up like pigs at a feeding trough or waiting in line to pay a ridiculously low price for all-you-can-eat. I mean, what's the story behind why a bald guy standing in line was wearing rubber boots up to his arm pits in Michigan's February snows? And why doesn't a woman 80-something know by now that Bermuda shorts aren't appropriate attire for days when the winter wind is strong enough to tip cows over in the fields? And who let the young guy in who was wearing a jacket with a big bat on the front and the bloody letters "VA" on the back? And why aren't I smart enough to stay inside on a day like this? It's not as if Don's wheelchair is fitted with studded snow chains.

I've written about 'the club' before in an article published at Associated Content. That was last year before I learned about 'keyword density' and making things search engine compatible so consequently that article doesn't get much traffic. Even so, it's still one of my all-time favorite pieces of content. It touches on aphasia and the loneliness it brings plus it's laced with happy memories from more carefree days before the stroke, and people have said it has some funny moments. If you haven't read Table Talk yet I hope you'll click here because that article is getting cob webs on it, sitting back in the archives of unread AC material.

Jean Riva ©

Painting: The Debauchery of Prince Regent by James Gillray

Forty-Eight Hours in Hell

I don't know what people used to do before automatic washers and dryers but right now I'm in love with mine. Ours got a real workout in the past 48 hours. Before I explain our two days in hell, let me first say that I spent all of last week deep cleaning our bedroom, getting it ready for the six hundred dollars worth bedding that I bought with my prize money from the writers' award. The room looked and smelled as fresh and clean as a sea breeze…but it didn't last long.

First it hit me in the middle of the night and I thought it was food poisoning. Everything in me poured out the appropriate place but at such a speed and so often that I did nothing in between but shower, clean up the bathroom and bedroom and washing bedding. The next day when I wasn't on clean up duty or poop duty I stayed in bed, too worn out to even eat or cook for Don. Thank goodness for cereal. Otherwise he would have starved to death. All day I was thankful that Don didn't eat the chicken I erroneously thought gave me food poisoning. And I was also thankful that the most expensive part of the new bedding---Pendleton wool bed covers---had safely escaped the carnage when the shot-gun flu took over my body.

Then last night it hit Don in the middle of the night but he had it pouring out of both ends. It was scary being that he's right side paralyzed, too heavy for me to lift and I had a hard time getting him into sitting position as weak as he was. Death by choking on the flu---that's not a good way to go. By the time I got him in the shower that crap had soaked though two mattresses pads---one the thick foam kind---and had run down the new bed skirting, hitting the carpeting. I was doing the dry heaves dance as putrid odors filled up the master bedroom and bath. If the sheets hadn't been brand new I would have thrown them out. Instead, I ended up standing in the moon-lit snow rinsing them out with pails of water. Since I was in the dog pen, it shouldn't have shocked me that my boots ended up with poop on both the tops and the bottoms. Oops.

I had just finished cleaning up and getting the washer started about five-thirty when it hit Don again, only this time he luckily just vomited all over the bathroom floor. I told him that 'close' may count in horse shoes but a foot from the toilet wasn't good enough when you're spewing multi-colored vomit. I may have screamed it. I may have said it jokingly. With only a bottle of Mr. Clean as my witness I can't be sure.

Finally, I got Don back to bed, the bathroom cleaned up---again---and I was just drifting off to sleep when Don woke me up saying "thank you." I didn't know whether to laugh or cry but I do know that gods of aphasia have a funny sense of humor. Don must have lain there ten minutes trying to get those words out.

So far today, Don is keeping down water, tea and toast which I couldn't do my first morning out. If we get out tomorrow, I'm buying my washer and dryer a box of half off Valentine's Day candy just to say 'thank you' for being there for me—my white knights in the middle of the night. ©

Jean

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Boom, Boom, Boom, Boom…

Don's manual wheelchair has two speeds: pokey and barely moving. Yesterday, Don and his chair were stuck in the latter gear while I was trying my best to rush us along so we could get to UPS before they closed. The wheelchair wasn't the only thing stuck. Don was in one of his aphasia driven singing moods.

"Boom, boom, boom boom," he belted out all afternoon, doing his best impression of Dean Martin without the martini glass in his hand.

Don has a good voice, he really does, but one word songs get to you after awhile. "Boom, boom, boom, boom." How many times can you hear that 'song' before you want to take your finger pistol out and blow that 'boom' out of his mouth in hopes it will fall back to earth with the letters in a different order? A 'boo', 'moo' and 'ohm' once in awhile would be nice. Is that too much to ask from the gods of aphasia?

He can't say much but one of his working phrases is, "I love you." It shocks me when it comes out because before the stroke it wasn't something Don said very often. He was a big, macho guy and not given to sentimental talk. Now, the phrase comes out in the weirdest places. For example, yesterday we were having lunch at a near-by restaurant and I was wearing my mother hat, saying things like: "Don, don't try to kiss the waitress with food in your mouth. Remember the time you got ice cream in her ear?" "Wipe your mouth." "Okay, you've hugged the waitress three times already. That's enough for this trip." I usually wait until the object of our conservation is out of ear shot when I say these things, but I must say them. He's got impulse control issues since the stroke and if you let him go unchecked, he tends to cross over that line between 'friendly' and 'creepy.' So as I sat there watching for his next indiscretion, and worrying about me crossing over that line between being a 'nagging wife' and a 'caring caregiver', that's when Don looked at me with puppy dog eyes and the gods of aphasia let him say, "I love you. Boom, boom, boom, boom."

Today, Don has a two word song on his mind. "Valentine's you. Valentine's you." Thank you, gods of aphasia, for giving Don a new song to sing on this very special day. ©

Jean
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[image above: 1909 post card]

Exciting News

I just found out that one of my aphasia caregiver articles has been nominated for the Best Text Article of 2007 on Associated Content! It's caregiver humor piece and I really needed this exciting news right now. The site publishes thousands of articles and I don't know how much of a chance I have of winning, but it doesn't matter. The nomination feels great, especially now. If you want to read it you can find it by looking in the right hand column (under 'Have you Read...'). Look for, The Shower Stall Mystery.

Quick Update

We've had our lives on hold waiting for Don's aorta aneurysm surgery date. The hold up has been that the cardiologist was out of town over Thanksgiving and wasn't available to give clearance for the surgery. Once back, he ordered some tests that are scheduled for the 10th so we know that Don will not get on the surgical schedule before those are read. It's looking more and more like Don will be in the hospital uncomfortably close to Christmas. I hate the waiting around! I hate the fact that while we've been waiting winter has set in! I hate the fact that the new hospital is on the other end of town and I'm scared to drive that far in the winter! I can't wait until this is over.

We also got the notice that Don will not be asked back to individual speech therapy next semester at the college where he's been going the past 6 1/2 years. We sort of knew it anyway but now it's official. Their explanation was that they only have ten students in the program next semester and a long waiting list of potential clients and they want to give people who've had more recent strokes a chance to go through the program. Don doesn't seem depressed about it but he's not happy about it either. Understandably. They've helped him a lot. He's had a good and productive ride and I'm grateful for that.

Jean

Timing is Everything

This past Tuesday a near disaster happened in the lobby of the building where Don goes for speech therapy. His wheelchair broke apart. The main bolt in the scissors-like bars underneath the seat snapped in two which made the whole thing fold up on itself---with Don sitting in it! The wheels, at the bottom, kept spreading farther and farther apart and at the top they kept getting closer and closer together until they were pinching Don in between them and the side panels snapped off their screws. Timing is everything. As I stool there panic stricken and not having a clue what to do, a professor we know walked by and asked if everything was okay.

"NO!" I replied, my voice edged in full panic mode, "Every thing is not okay." And I explained what was happening.

The professor flagged down a student she knew and sent her over to the conference hall, several buildings away, to sign out one of their curtsy wheelchairs for us to use while we were on campus. It seemed like it took forever and while I was waiting I kept ordering Don not to move even one inch which is hard for a friendly guy with short term memory issues to do. The college kids going back and forth in that lobby have always made him forget that we have places to go and things to do as we pass through.

Finally, I got him transferred to the loaner chair and up to class. While he was there I got his broken chair back in the Blazer, tracked down a phone book and made arrangements to stop at the orthopedics place on the way home. Don's had a new wheelchair on order for a couple of weeks and I knew it had come in; we were scheduled to pick it up next Monday. Timing is everything. They had just put it together that afternoon. They didn't have room on their schedule for a full adjustments appointment and the cushions hadn't come in but the chair was usable. Life was good again.

Timing is everything. This past month I've been working at the YMCA on a machine to strengthen my upper body and since I can't use our Bruno wheelchair lift in the Blazer until the new chair gets another style docking arm, I have to lift all forty pounds of its awkward metal and plastic in and out of the car until next week. So the extra muscle strength has come in handy although I still struggle and use a few blue words. Thank goodness a list of handy-dandy four letters words came with a Welcome to Caregiving packet.

This whole thing with the wheelchair turning into a pile of junk could have been so much worse. We were extremely lucky to have it happen where it did. We were extremely lucky that we had a new chair on order and to have the orthopedics place stay open until we got there to pick it up. Timing and nice people truly did save us from having an inconvenience turn into a disaster.

Jean Riva ©

P.S. I published a blog entry here last month titled Inconvenience or Disaster. I didn't think I'd be using the stress reduction techniques I talked about in it so soon.

Mayhem in Caregiverville

Did you ever have a day when you had to wear your Christmas sweater three days after Halloween because you forgot to do the laundry? Okay, so I fail at housewifey things but can anyone explain why a 60-something year old woman can't avoid stepping in dog do-do? We have a dog. Wouldn't you think by now I'd know enough to look where I'm walking when I go through his pen? I had gone outside to check the solar lights that the fertilizer guy broke and I was busy thinking I should just go back to bed and start over. Unfortunately, I didn't notice that the treads on my tennis shoe was embedded with poop until we were sipping our breakfast coffee in a restaurant at lunchtime. Oops.

Obviously, my morning was not going well but Don was in his Aphasiac-WonderBoy mode singing made-up words to a polka beat. "Oupa, oupa, I, eeee, oh, goombya, goomdya, la, la, la." Sometimes you just want to verbally smack the happiness right off his face. That impulse was almost too strong to resist when we were at the restaurant and he rolled over to the cookie case to make out his mentally wish list. I opened my mouth to snap out the words, "You're still diabetic, you know" but instead of the words coming out it hit me, then, that I hadn't taken my blood pressure medicine when I got up. Crap.

Having recognized the primary reason I felt bitchy I worked on keeping my mouth shut lest I unleash my inner Shrew Lady and get us banned from our favorite restaurant. So I sat there quietly waiting for our food to arrive while eavesdropping on the conservation going on behind me. It was coming from a man---looked divorced---and his 8-9 year old son. The son had gotten into some trouble at school and after telling his dad about it he asked if his dad had ever done anything like that. His father then launches into a monologue cataloging all his high school pranks, talking and laughing as if they were two buddies sitting on bar stools. God, Shrew Lady was getting hard to contain! I glanced back over my shoulder at the guy and that glance must have looked more like a schoolmarm glare because he sat up straight in his chair, and said, "I'm telling you all this, Mike, because I want you to be better than I was." Shrew Lady wanted to throw her hands in the air and say, "It's about time you remembered who you're talking to." But she didn't. Good.

We had to go to the grocery store that afternoon but first we stopped back home to take the pills I'd forgotten earlier. As I walked past my EZ DOES IT cart that I'd broken the day before Shrew Lady really needed the old Don to talk her down from the ledge. But, of course, his language disorders makes it impossible for the new Don to do that. "Oupa, E, I, oh, goombya, goombya, oh, bridge, " he sang instead. Bridge! A real word in his song! Things were looking up. I knew exactly what he meant. Coming home from vacation years ago, we had the radio on to a Wisconsin station when they played a polka sung by a local band and the lyrics went: "Why don't you jump off the bridge polka" repeated over and over through out the entire song. Over the years, any time either of us would sing that line it would make us laugh. Don was trying to cheer me up. Sigh.

Later I was bringing groceries in the house without my EZ DOES IT cart and Don was in the kitchen waiting for me to clean the wheelchair's wheels off so that he could go into the carpeted rooms. "Seven years," he said, shaking his head, meaning how long it's been since his stroke.

"Yup," I replied as I always do when he says this, "But we're doing good considering the alternates."

"Thank you," Don said, hugging me with deep emotion in his eyes. Sometimes it doesn't take many words to speak volumes.

With that hug Shrew Lady was out the door and Nice Nancy came in. "I love you," Nancy said, deeply grateful that he is still in her life.

Jean Riva ©

Painting by Sisley Alfred, 1885

The Language of Clothing on the Planet Aphasia

Watching my husband trying to decide what to wear to today reminded me of the year we moved into our new house, several years post stroke. Don’s got a closet, now, that he can roll into and with this closet came his training to relearn to pick out his own clothing for the day. It was a difficult and time-consuming project that brought Shrew-Lady swooping into our bedroom almost as often as Nancy Nice Nurse. Shrew-Lady had a tendency to lose her patience while Nancy Nice took her careful, cognitive training right out of the Caregiver’s Guide to Building Self Esteem.

Don, in the closet today, was almost comical. Scratch the ‘almost’ out of that sentence---he was comical. He was trying to decide between his deer hunting shirt with a matching logo hat and a tee-shirt with a zipper front John Kerry fleece jacket. (Ya, he knows that Kerry lost the election a long time ago, but he loves the joke of wearing the jacket now.) Politics or hunting? Hunting or politics? After five minutes of this dressing dance, I had to resolve his dilemma so I could get in the closet or I would have had to go out today in my common sense, white undies. That would not have been a pretty sight. Hunting won. Politics will still be good next week and his big adventure in the woods will be old news by then. The choice was a good one, everyone was anxious to hear about how the hunting day turned out.

Stroke progress comes in many small and wondrous ways. They creep up so slowly sometimes that so you hardly notice it happening. Don has gone from not knowing a shirt from a pair of pants and not having the words for colors to deciding something as complex as which of two fashion statements would stand for his mood and sense of humor for the entire day. Clothing has become a silent form of communication for Don. I just counted; he has twenty-seven logo tee shirts and a dozen more in a box that our dryer mistreated. And then there are all the baseball style hats lined up on hooks with saying and logos on them.

Don’s “language of clothing” works both ways, too. If he sees a logo shirt or hat on someone, he’ll roll up to that person and point to the writing or picture on their clothing. The stranger usually ends up reading it to him thus forcing them to interact with an alien from the Planet Aphasia. Most people are very nice when he does this, a few are uncomfortable, at first, being confronted by a speechless person in a wheelchair but Don usually wins them over quickly.

Don's joy in reading tee-shirts is so evident that people have been known to give him shirts. It happened twice this month. Both shirts were custom-made and neither person would let me pay for the tees. They just ordered the shirts and presented them to Don when they saw him rolling around, and I’m not talking about gifts from friends. Both of these last shirts came from nameless acquaintances in places where we frequently go.

My clothing is not as vocal as Don's but I did buy a chenille bathrobe recently and it talks to me. It gave birth to purple dust bunnies all over the house and they are screaming, “It’s time to get off the computer and clean house!

Jean Riva ©