Kennedys Disease Community
Request for treatment before disease onset

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https://kennedysdisease.groupee.net/eve/forums/a/tpc/f/8581031121/m/6357003576

03-26-2015, 04:26 PM
Henry
Request for treatment before disease onset
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This message has been edited. Last edited by: Henry,
03-27-2015, 10:00 AM
Cam
Hi Henry
If you can't know for sure (via the DNA test), you're better off putting it out of your mind and living a good life. Even if you are affected, onset is usually later in life, and slowly progressive. Don't let a possible issue in later life impact the prime of your life.
Cam
03-27-2015, 10:20 AM
Bruce
Henry, thanks for your inquiry. Cam is giving you good advice. Live your life - do what you enjoy doing - take care of yourself. If you have the defective DNA, it will eventually surface. When that happens, you will still have many years to run, cycle, swim, etc. Once the condition begins to impact your ability to perform all these activities at the level you are accustomed to, then you will need to reevaluate the level you should continue to perform at. Your body will tell you when you have overdone. Then, you have to be a little smarter when exercising.

I am 68 years old and had onset in my late twenties. I still exercise every day. But the types of and level of exercises performed is different than 15 or 20 years ago.

Knowing or not knowing should not make a difference in how you live your life. But, being healthy and happy will make a difference.
03-30-2015, 10:48 AM
Henry
hThank you,
I wish you good health,
Henry

This message has been edited. Last edited by: Henry,
03-30-2015, 10:57 AM
Bruce
Henry, good health is important. Just because we have KD, that doesn't mean we have poor health. A well-balanced diet, plenty of exercise, moderation in the intake of non-healthy foods and beverages; these are all ways to help remain healthy. And, taking corrective action, when needed, to minimize other health issues is also important.

Celebrate life and try not to focus on what could happen in 10, 20 or 30 years.
05-08-2015, 02:26 AM
ToddAllen
Henry, I don't believe exercise has a major impact on the progression of the disease. Fit people may cope a little better for a while but eventually as the nerves degrade the muscle will too regardless of the starting level of fitness.

Pursuing an extreme level of fitness is potentially harmful. Take care to avoid injury. Joint injuries that appear to heal and aren't that bothersome when one is young and fit may become serious when the disease progresses.
05-29-2015, 11:39 AM
BC Paul
Early information and access to sites like this have given you a tremendous advantage Henry. When it comes to lifestyle choices, consider getting involved in a service or fraternal organization. Not only will the activities help to keep your mind off the worries about the future, but at some point (if your end up with KD) you may find that having a support network beyond your immediate family beneficial. Also, as with any potential professional athlete who at some point in their career may be sidelined by injury, it is wise to develop the managerial skills that will allow you to continue to contribute in your chosen field should you be required to take a less active role. I know many people who, when faced with adversity, have placed all of their efforts trying to deny limitations and muscle through with intense personal effort. Sooner or later though, through KD or just old age, there will come a time when we will be 'benched'. When it comes as a surprise, many just walk off the field ... others do the books, scout, promote, manage, write and generally manage to celebrate what they had done while continuing to contribute in a different way. Change is inevitable