Location: desert hot springs
I'm wondering, do most of you just feel bad most of the time? I have not felt "Good" in years. I wonder wether its just my depression from the disease or depression from not feeling good. All I know is I have not felt really good in quite a few years. Just wanted to hear from others about their experience with this.
Location: south carolina
Can you describe your pain more or symptoms? I generally for the most feel well. I do have periods that may last a few days where I have pain that I feel are deep in my bones or joints but they seem to subside.
Location: Chicago, IL
Pierre, I felt similar in my 40s. I was trying to adapt to having an untreatable progressive disease. Descriptions of KD suggested I should expect slow steady progression and I thought as long as I stay a little ahead of my decline in terms of making my surroundings disability friendly I could continue living comfortably. But my decline wasn’t steady rather it kept accelerating and by 50 I had an elevator in my home and spent most of each day on my scooter with few remaining options to make things easier. I was dreaming of a robotic arm to help me do the growing number of daily tasks I was struggling to do with my own arms and hands. Despite my efforts to stay ahead with adaptation life was not very comfortable or enjoyable and I was feeling increasingly crappy more and more of the time. My expectation was it would only get worse.
I was wrong. I learned much of what I attributed to KD was due to other issues contributing to poor health and disability. As I discovered and fixed those issues my thinking has completely changed. My expectation is of improving health and fitness and while today is hard I expect tomorrow will be better. I do not feel diseased but rather challenged by KD. It is a challenge I enjoy. I get unreasonable satisfaction from every small victory.
I have good weeks where I make much progress and project into the future unrealistically. About 6 months into my recovery I hoped in another 6 months I might be running and eventually dancing. I think it took me a year before I attempted jogging and I only made it a few strides before a leg nearly buckled and I tore my left knee. Since then I have had many more setbacks and I am now 6 years into my recovery, 57, and I am still not jogging or dancing. But I am walking better and I “sprint” for short distances. I am perhaps irrationally optimistic but I still expect to run, jump and dance even if it takes years to achieve. I feel increasingly youthful with time on my side even though I know nobody stays young forever.
Location: desert hot springs
Thanks Todd! And thank you to Dorsey, your question and Todds response have opened my eyes to things I was having trouble seeing in regard to "pain". That was very helpful. I do think a lot of my pain is from childhood trauma. I have been in psychotherapy and been on almost every antidepressant over the years and did feel I had gained some control and confidence over my past traumas. But years before I got my diagnosis of kennedys, my body and mind just seemed to regress. The symptoms of the disease combined with past trauma made all those hopeless and worthless feelings come back even worse. I am 4 years into my actual diagnosis now, with the first 8 months after thinking it was ALS. So now I have work to do to regain my mental status away from being a victim of abuse and trauma to a survivor of it. The disease just has set me back some. But your words have helped me realize a lot of my pain is not the disease, it is a regression mentally back to the pain from abuse and trauma I experienced. This is not going to be easy, but anything worth doing is usually not easy. Again, thanks so much Todd for your words of encouragement. I will keep you posted.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614