Then, when you finally admit that you might have it, fears work their way into your daily thoughts. You begin to imagine the worst. And, because the disease is not well known, you have no idea what to expect. All you know is whatever is happening cannot be good.
As the disease progresses, you begin to pray for a miracle, or at least a treatment. You begin to worry about your family’s future. You wonder if you will have to retire early? And, if you do, what does that mean for the family’s financial wellbeing?
Little things begin to nag at you like who will mow the lawn or do the home repairs? Can we afford to send our children to college? The concerns never stop, and, they continually grow in number as your strength fades.
Your friends and family notice your concern and want to help … but there is nothing anyone can do except hope and pray.
The reality is that the disease does progress. Fortunately, it progresses slowly. There are also brief periods of stability (the plateaus). These periods are something you look forward to because they give you time to adjust (to accept) your current condition. Unfortunately, you are never truly prepared for the next progression (another slide).
Whether the symptoms begin in your twenties or not until your sixties, the only thing you know for certain is that it will get worse.
This is “living with Kennedy’s Disease.”
there is life after Kennedy’s Disease.
Bruce,
ReplyDeleteThank you for all the information. We received the diagnosis yesterday that my husband has this disease. He is 32 and so we are ready to do whatever possible to slow the progression of his illness. Your blogs have made us realize that this is not a death sentence and in fact we can still live the life that we have been. We are most concerned for our daughter as she will be a carrier of this illness.
Your comments are very kind.
ReplyDeleteYes, you are so right, you can continue and in fact you must continue to enjoy life together and as a family. As I mentioned in my blog, I was still climbing mountains and taking day trips on bikes into my late 40s.
Reference your daughter, I can only comment about my guilt that I feel for passing this defect onto her and her children (my grandchildren). Her attitude about it is much better than mine. Boy, is she strong!
My hope and prayer is that we will soon have a treatment for Kennedy's Disease. In fact, recent tests of IGF-1 on small animals show a lot of promise if administered pre-or immediately after onset of symptoms. Researchers hope to be able to have a clinical trial on this treatment within the next two years.
If you have read some of my articles then you might have come across something about the benefits of "smart" exercise. Your husband needs to keep those motor neurons firing to keep those muscles working ... not to excess, but regularly. If he does not use them, he will lose them (quicker).
Also, we will be launching our new KDA website by the end of next month. It will be filled with our current information, plus much more in an easy to use format.
If I can ever be of help, please do not hesitate to ask.