Location: Peoria Illinois
I am almost 60 and was diagnosed in 10/06 with KD, but have had symptoms for years, just didn't know what it was. I seem to find that my duties as a Letter Carrier have helped to keep me mobile. I have noticed lately my walking is becoming more difficult, especially stairs.
I was just wondering what others have experienced. In particular I would like to know how long does the progression seem to be from trouble walking to becoming wheelcahir bound? I would liket o be able to hold retirement off as long as possible (3-5 years).
There are no set rules or timeline for the progression. I know men that are in wheelchairs in their forties and others that are still walking at seventy. There is a gentleman that still skies in his late sixties. Another is considering giving up break-laying in his mid sixties.
Live for today, but plan for tomorrow.
You are doing well. Value your mobility and desire/capability to work. You will know when the time is right. Staying mobile and continuing to fire those motor neurons is the key to staying healthy and happy.
Location: Dudley, UK
Hi Jon, my dad has KD. he started having problems walking and with stairs about 6 years ago. He still gets about the house, but he can not walk very far but he is not in a wheel chair yet. But this is just my personal expericence.
Location: Peoria Illinois
Lucy-Lu..........yes, I can understand your Dad's condition. That is my situation now. Though I am still mobile, I' m wondering how long that will last. Trouble with stairs and distance (maybe a block), and NO running at all. Thought it was my rehumatoid artheritis.
Location: San Luis Obispo CA
To deal with this stage I purchased a used Pride mini_Jazzy (I added the seat elevstor later) and installed an electric lift in the back of a Town & Country mini-van. For years I was able enough to get the chair in an out OK (it is becoming a problem now after 5-6 years). I used the chair for what I called distance or duration. I also used it when I dodn't know what the seating would be like where i was going. I didn't use the chair around the house or work since I had made other accomodations there already.
I would highly recommend the newer mini-jazzy 1103 (i think) as it is a very good chair for tight spaces. Not a great chair for long distance or speed or for those over 250lbs.
Whatever make/model I highly recommend a power chair. Wheelchairs are not practical until you have a full time attendent which may be many-many years away.
email:rheitzman at gmail
Location: Winnipeg, Man. Canada
Hi Jon, I was diagnosed Feb/06, with walking symptoms a year earlier. I turned 41 this fall and my progression has been unusally rapid, going by all the feed back and reading I've done. I now have AFO's for for both feet for support and to help lift my toes. I walk very short distances(less than 70 feet)with a cane and use manual wheelchair for anything farther. Looking for an appropriate electric chair. I can't stand without support, as I have no balance. I'm still working but, was forced to transfer to a desk job in August as I couldn't climb or carry anything anymore. I was a Telecommunications installer/repairman. Not trying to scare you but, I feel the facts help everyone to understand how different the progression can be. Everyone is DIFFERENT! Hopefully you'll be able to reach your goal but, do be prepared as Bruce says.
My neurologist told me that about one of three people with KD requires a wheelchair, usually about 20 years after the onset of symptoms. A cane or walker may be needed before that, he said.
I was diagnosed w/ PPMS in 2003. I have lots of fatigue and cognition issues and urinary retention problems. But seriously my mobility hasn't been greatly affected- unless I am paralyzed with fatigue.
If you saw me you wouldn't know I had MS. Yet, my life has completely changed. I've been on SSDI since 2006.
Diagnosis was made during work up for trigeminal neuralgia pain which ultimately was "fixed" w/ MVD surgery.
Just had an MRI after about 5 yrs. Really no change on MRI from 6 years ago. Yet my bad days out number my good ones.
How many of you have a diagnosis of PPMS and don't have particular mobility problems? How many of you have a very slow progression and have a PPMS diagnosis?
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614