Location: Cambridge, UK
I am just approaching my 81st birthday. I am relatively lucky as my KD came on fairly late in life. I had a few instances of “dry drowning” in my late 60s, but my legs only started to show symptoms about 7 years ago. However, now my legs are very week. I have used a cane for several years. Getting up from a chair is always an effort, I quickly get tired from standing, and can only walk for 50 or so yards. The progressive weakening is slow but I feel that it won’t be long before I become severely immobilised. I can still drive and I have a folding wheel chair in the boot/trunk of my car with a powered winch for loading and unloading it. I live with my (partially disabled) wife in an “assisted living” apartment which enables us to remain fairly independent but with emergency help on-hand.
The UK’s National Health System looks after me well. I attend a neurological clinic every 6 months, but this is mainly for people with full blown motor neurone disease, and they do not have a great deal of experience of KD as such. Have any of you any advice to help me cope with the forthcoming transition from limited walking ability to being virtually chair bound?
Thanks in advance.
Location: Chicago, IL
David, I should be asking you for advice as you are doing very well to still be walking and driving at 80. I would love to hear more of your history.
I was doing much worse at 50 than you are doing now. I had been making preparations to live with increasing disability for several years. I started off with small things such as stairway handrails, shower and toilet grab bars, seat cushions and adjustments to the height of furniture such as chairs and our bed to make it easier to get back on my feet. A rolling stool with a pneumatic lift in the kitchen made it easier for me to access the bottom shelves of cabinets and our refrigerator. I went from cane to walker to scooter quite rapidly. We made changes to thresholds, doorways and stairs. The last big change we made to our home was installing an elevator.
I made the mistake of accepting my fate too soon. In hindsight it seems the more I tried to accommodate disability the more I facilitated becoming disabled. There will likely come a day when accommodation is my only choice but over the past several years I’ve been very pleased to discover my body still has some fight left in it. Having corrected numerous things other than KD contributing to my declining health and fitness I find my body can still rise to and overcome physical challenges.
Which leaves me with a conflicted message. Preparing for disability should make life easier and it is good to have a chair you can lift yourself from when deeply fatigued but celebrate using the more challenging chair when you can.
David, you are really lucky. Despite being more than twenty years younger, I am already in the pretty same condition as you.
Since the progression of KD is quite slow, you probably will not face a sudden deterioration, you have to continuously adapt to a slowly changing situation instead. I guess, you will always know the next challenge, and you will have enough time to prepare them.
I feel the most important is to never, never undertaking too much. Avoid falling. (Yesterday I had my third episode of a rib fracture because of falling. I overestimated my capabilities, it is a dangerous mistake).
Anyway, I agree with Todd. If you correct all possible health problems other than KD, it may help. And of course, keep seeking physical challenges, but be always careful.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614