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Amy (centre) with her husband Don and daughter Carolyn. Amy passed away October 18, 2009.
October 2007
It’s autumn again, my favourite season, and my 4th fall trip to the Motor Neuron Diseases Clinic. It’s not the annual pilgrimage I had hoped for but I am well-cared for there and I learn new things about how to cope with this adversary called ALS. When they say three letters that change your life; they mean it.
My pulmonary tests and lung capacity were good, better, in fact, than last time. Having oxygen in the system is a good thing and I was worried I had lost more ground these past few months. I am still taking my vitamins and minerals (a glass of red wine is a good anti-oxidant and gets the okay as part of my diet). The speech therapist is new so we did some tests again and I do have more gravel in my voice (I’ll accept sexy if you will). I have to go for a swallowing test before my next visit in the spring as it is the whole vulnerable area of breathing and sustenance that is crucial to maintain as long as possible. I will try to start taking my biggest pills in yoghurt or apple sauce to make it easier getting them down. I was also told I’m not as loud as I used to be but I have my doubts. Provoke me and the volume goes up. My physical abilities are weakening so I got to try out some transfer boards (definitely not for surfing) and look at new shower chairs with arms and a back. Safety first. I described the house modifications but more about that below. My visit with the doctor was pretty much a repeat of last time; no big red flags, progression is still slow, confirmation I am getting worse but able to manage with the tools and equipment available.
In my last update I said we were waiting for funding from the Ontario March of Dimes. My request was approved in August (your tax dollars at work…and mine.. and contributions to the United Way all helped) and I thank the staff there for their help and advice. We booked the project with a company called Basic Modifications. My faith in the human race has been restored with these lovely gentlemen. If you are looking for amazing contractors and results, we’ll give you contact info. In August a lot of our extra time was swallowed up with planning, picking and choosing everything from paint colour to tile. The challenge of how to get me into the house in a wheelchair proved to be quite complicated due to the ramifications of an indoor lift; expensive as it would have to be a custom job due to the back stairway being very narrow and high versus an outdoor lift; tricky placement since one option was to make a doorway into our lovely, small office. The ramp idea was rejected as it would have had to be 40 feet long, stealing considerable patio space for 2 switchbacks. Plus, in the end it would have cost twice as much. Thankfully, after several conversations with various friends and neighbours the option of raising the side door, filling in the stairwell so the floor is at main floor level height was agreed upon as the best solution. As in dominoes so is construction; once you knock the first one over, more changes will follow. To fill in the floor meant taking down a wall and that meant the cupboards would be removed and the floor needed new something now that there would be more of it and this is the house that Jack built. You get the idea.
The bathroom was completely gutted and re-done to be barrier free. No tub and a slightly sloping floor to allow water to drain. We love it but our cat, Emma, is slightly miffed since the tub was her drinking bowl. There is more room now and I’ll need it in the future. Some things like a sink become more challenging when you have to consider getting a wheelchair underneath it so it is a rectangle and hung from the wall. Our faucet has a joystick which is easier for me to use.
The kitchen’s vintage was mid-seventies, not very practical with space and in dire need of an update so it wasn’t too much of a temptation to stop the dominoes from falling. With the staircase gone, the kitchen is about 40 square feet bigger which makes it much easier for me to wheel around in. It does not have any specific disabled features since I am pretty much incapable of cooking but while I still have one good arm, I will be able to reach all the lower cupboards. I don’t know if I can convince Don one cupboard should be dedicated to chocolate….
We have had several long-standing issues with the house that also needed to be addressed on top of required modifications. Our roof line in the middle is not conducive to run off. We have had ice a foot thick rip off our gutters due to the Western exposure. Lovely for light but horrible for snow build-up and did I tell you about the stalactite icicles? We now have a bigger patio that enabled us to have the deck that the lift attaches to (remember Jack? And his house?) and it will soon have a covered section extending from the cursed roof line. The gutters are gone from this section and will prevent all the ice on the roof morphing into killer ice on the ground keeping everyone a lot safer. Thankfully, I’ve been a good girl and only fallen once since last December. The last part is to build a new fence. The old one was hardly hanging together and we still need a big gate because we still have really big sculptures in our back yard.
A big stress and somewhat time consuming was figuring out where we could be while all this was happening. It is not so simple for the disabled and I thank all those who offered to put us up (or maybe it was put up with us) but my challenges simply make it too difficult for most houses. Carolyn stayed with friends much closer to school so she didn't have to do the up at 5:30 am and take the 1 1/2 hour bus ride thing. (Thank you, thank you to those families). We were out of the house 3 weeks and are back in the house now but it is still a mess with the fridge in the dining room and the living room piled with kitchen stuff. I’m not allowed to go in there right now as it is deemed too dangerous.
Don was invited to a metal symposium in Mexico for the last 2 weeks of October but turned it down so he could be project manager for the house renovations. He could not in good conscience leave and then have issues come up. We need how many outlets? What do you mean it doesn’t fit? In the midst of all the house things, he was also a finalist for a big project in Connecticut with a deadline date of September 14. We sent it off in time and won’t likely hear anything for awhile. The concert preparations shifted to high gear in September and Merriam is its busiest in September so if we seemed overwhelmed….we were! If that wasn’t enough, Don has been diagnosed with osteoporosis. This is not a good thing for a caregiver of an ALS patient to have. It is manageable and he is taking the required and useful drugs but it was a shock for a middle-aged man to be given that news.
And where did the summer go? This year we stayed close to home with lots of Solo II racing in the Mini Cooper S and not once in the rain. Don was involved in 3 series of races and 2 pro-slaloms. Carolyn and I plus a few friends along the way got to see and feel this kind of race first hand. I won’t be able to sit in the car next year. The racing seats are tough to get out of even if you are able bodied so I enjoyed as many as I could now. Carolyn got a job as an FDR (Food Prep, Dishes and Runner) at Johnny Rockets at Square One which she enjoyed and got a pay cheque for the first time. Don also located a used motorcycle, a model he always wanted and fulfilled a dream for both of us with some rides. It was one of the things on my to do list before I die. I can’t ever drive one but I sure can say I’ve ridden one.
For those of you who have been keeping score, I am officially two fifth’s into the standard time line given to victims of ALS. The clock started ticking in earnest August 30, 2005. If I get my 5 years, I have three left to go but I can tell you now, for the record, the going gets rougher from here on in. I have crossed over from the I can still do a lot on my own and function fairly independently to I really do need lots of help. The calm, relaxing (yes, it is actually me I’m talking about) and often rejuvenating alone time is becoming a thing of the past. It is just too damned scary to be alone sometimes and the panic is real when you know you can’t get up from where you are sitting because the chair doesn’t have arms and nature is calling….loudly….. It is also hard to make the leap from being oneself to being more of an object. My platform lift says: Disabled persons only. No freight. Who are they kidding? Just slightly livelier freight than a stove. One cannot be proud and vain and be disabled, well this disabled. I have to be lifted when I’m tired. I have to have help to get dressed and get into bed. I can no longer deal with zippers and most buttons so take pity on me the next time you see me with my right shirtsleeve cuff undone. I occasionally have some exciting bathroom adventures when I’m out in the big wide world as some builder’s perceptions of accessible vary wildly from other, more compassionate ones. Why do they have a disabled height sink and then put soap dispensers too far away to reach? Ditto for the paper towel dispenser.
My best day is today and I push myself too hard sometimes but if I don’t do it now, I never will. I am at a crossroads with a big factor in my life; work. I love my job, it is demanding which means it is never dull, it is satisfying on many levels, it gives me contact with people and pays bills. It is in my field of expertise and my colleagues are a pleasure to work with. But my days are numbered. No matter how one looks at it, they will come to an end at some point in the not-too-distant future. Where is that point? What, if any, adaptations can be made to accommodate less ability? With the emotional load that comes with wrapping my head around the fact that I am slowly being paralyzed, can I even keep it together? Some days, I admit, are much harder than others to do just that. I have lots of support and encouragement, not to mention a wee dose of determination but there is a towel out there somewhere waiting to be thrown. Anyone up for starting a new pool?
Things I have lost since my last update include driving, in the driver’s seat. I can, however, continually renew my passenger seat license. On the flip side, Carolyn got her G1 and will begin driving instruction soon. I will be a menace on the sidewalks with my power wheelchair and scooter; she will be the one on the roads so watch out for the red Magnum.
This disease is brutal physically, financially and most of all, emotionally but with help and company, it is much more bearable.
Many blessings,
Amy Doo