I often receive emails that ask similar questions about living with Kennedy's Disease. In this post, I am generalizing these questions and providing the answers that I would normally give. Most questions have been answered at one time or another in this blog and that is why I am including the links to the article where I believe the question was addressed.
_______________________________Q: My husband has tested positive for Kennedy's Disease, but he does not want to discuss it. How can I help if we cannot talk about it?
A: Acceptance is something that everyone has to go through at his or her own pace. Many years ago, I wrote a short story about the typical nine stages of acceptance. Last year I wrote a shortened version of the story for one of my blog articles (Nine Stages). I also wrote specifically about denial in another blog post (Denial).
Q: I heard there was a treatment for Kennedy's Disease. Is that true?
A: Reference a treatment for KD, at this time there is not one available. We had a clinical trial a couple of years ago that was not effective. That being said, there is some positive news on the research front. We are hoping for a new clinical trial with the next year on IGF-1 (Insulin-like Growth Factor - 1 for muscles). The initial research performed was on pre-symptom mice. The results were quite encouraging. The NIH is currently testing IGF-1 on mice models that already have Kennedy's Disease (KD) symptoms. If this research also shows positive results, we should be able to move to a trial. You can read more about it by clicking on these links (Mighty Mouse, IGF-1 News, and Chat with Maria).
In addition, another compound (ASC-J9) shows promise. The NIH is currently running tests on mice for this one also. If it is effective, we could see a trial within a couple of years. You can read more about it by following this link (ASC-J9). Both of these researcher projects received grants from the KDA.
Q: If the muscles are wasting away, will exercise help or hurt me?
A: This is an interesting subject. NIH hopes to have a clinical trial on the benefits of certain exercise within a year or two. Currently, no one has researched the issue. Most neurologists, however, believe that stimulating the muscles and motor neurons is an excellent way to help maintain them. Last year after seeing a physical therapist, I published a Smart Exercise Guide for those of us living with KD. The program is designed for those of us where the disease is more advanced, but can be modified for younger men also. Regular stimulation of the muscles and motor neurons is the key in my opinion.
Over-exercising, on the other hand, is far worse than not exercising at all. Lifting heavy weights is not encouraged while using lighter-weights and aerobic exercises are encouraged. To read more about exercise, click on these links (Exercise I and Exercise II). A link to the PDF version of the exercise guide is in the second article.
Q: Are there certain foods I should or should not eat?
A: Diet is something else that has not been studied. Neurologists, however, believe that a healthy diet is important. Excess weight, especially as the disease progresses, becomes a serious burden on the weakened muscles and joints. Diabetes is also a concern for several reasons including the fact that as Kennedy's Disease progresses, we become less active. A serious side concern is that we often attribute many other health related issues to Kennedy's Disease and not see a doctor. I wrote about it in this article (Other Health Issues). The key is to moderate food and calorie intake to your current lifestyle.
In addition, as the disease progresses, swallowing and choking on certain foods and drinks can become an issue. I wrote about this issue several times, but this article focuses on the problem (Three Keys).
Q: I do not have several of the symptoms listed. Should I expect that these will show up later in life?
A: The progression of the disease is an interesting subject. I wrote about the non-uniformity of the symptoms and progression in this article (Nothing Uniform). Again, there is nothing uniform about the age of onset and progression of the disease. Some experience certain symptoms while others do not. Some progress at an accelerated pace, while others do not. This is why I believe a person with KD should not be too concerned about what could happen (except for financial and family planning purposes). Since we cannot predict the future, worrying about what we cannot do anything about is a worthless waste of time and energy.
Q: Where can I learn more about Kennedy's Disease?
A: The KDA website is an excellent reference for almost any subject on Kennedy's Disease.
_______________________________If you have other questions, please do not hesitate to ask. If I do not know, I will try to find someone that can answer it.