Should Kennedy’s Disease influence your life?

One of the benefits of this blog is that it allows me to dwell on some interesting subjects concerning living with Kennedy's Disease.

There are many decisions that have to be made as you age with this disease. Personally, however, I feel that Kennedy's Disease should not be a determining factor in deciding a person's direction or purpose in life. Kennedy's Disease might be an influencing factor (especially later in life), but not when you are still young.

Recently, a young man asked my opinion whether he should pursue a certain career knowing that he might have Kennedy's Disease. Specifically, should he not go to medical school because as Kennedy's Disease progresses, he will not be able to perform his work (e.g., surgery)? I believe a major concern was whether he should acquire a large number of college loans to finish medical school when he might be forced to retire early from that profession.

If you are in your 20's or 30's, there is still a lot of living that can and needs to be experienced before Kennedy's Disease becomes a determining factor in your life. That being said, I also feel that you should prepare for the future by making certain you have proper health care and disability coverage ... just in case.

I just can't imagine what my life, and my wife's also, would have been like if Kennedy's Disease was the primary factor for consideration in everything we did in our 30's and 40's. When I was in my early 40's, I rolled down several mountains in Washington State when my legs just gave out after hiking for hours on end. Guess what, after each fall I got up, brushed myself off, and limped back to the car. Yet, as we walked, we talked about where we should hike the following weekend.

There were also many other physical challenges at work (especially while traveling), but it never really slowed me down until the mid-to-late 50's when more and more falls resulted in injuries. After a couple of broken legs and some torn ligaments, I realized that Kennedy's Disease finally needed to be a factor in my work.

I know of many others who have even better stories about how they lived life first ... even into their 60's and 70's. One man in his mid-60's still snow skied even though he commented he was slowing down a little. Another man felt he was ready to quit bricklaying now that he was in his early 60's. He was just concerned how he was going to spend his days.

All I would ask of any young man, who is concerned about how Kennedy's Disease will affect his future, is that he just be smart about it (put safety first). As the disease progresses, do not automatically say I can't or I shouldn't. First, look for ways to still make things happen … perhaps by using a mobility aid (cane, walker, wheelchair, etc.).

There are many benefits to having early testing and detection of Kennedy's Disease. It can also be negative if the person starts asking, "what if," or commenting, "maybe I shouldn't" too early in life. Personally, I do not want my daughter or grand children tested. I feel it would place an unnecessary burden on them and might change how the grandchildren are treated or live their life. Let them be children and young adults without having to live with the burden of "when" and "how bad will it be." If a treatment or cure is discovered, there will be plenty of time to get them involved in a treatment program.

I believe life should be lived to its fullest (quality should come first). It is also good to know your limitations. However, you are doing yourself a disservice if you self-impose preconceived limitations.