Tuesday, December 5, 2017

Advice from a 40-year veteran of Kennedy's Disease

Yes, sometimes I am amazed that it has been forty years in the making. I have learned a lot about living with Kennedy's Disease over these last four decades.

A young man stumbled upon my blog the other day and wrote me. He is 34 years old and just diagnosed with Kennedy's Disease. He wrote, "I don’t really know what to expect or even how to deal with things. Can you recommend to me anything as far as exercising or vitamin/ supplements or really anything I can do to try to remain my best possible. My neurologist will only see me every 6 months and really hasn’t told me much other then I need to see a genetic counselor  Any recommendations you may have will be appreciated  "

I responded:.

  • Exercise is important. Don't overdue, however. There is something called the 70% rule. Exercise to 70% of your capability. This will keep your good muscles and motor neurons strong and active without doing damage.

  • What your weight. As the condition progresses, it becomes more difficult to stay mobile. Keeping your weight down makes it easier to walk and sustain a good level of activity. 

  • Exercise and a good diet will go a long way in staying healthy. Inactivity and certain foods contribute to certain health conditions. Since we are less active, we don't burn as many calories and are more susceptible to certain conditions.

  • Safety first. When you are young, it shouldn't be too much of an issue, but I did a lot of damage in the early years because I didn't know when to back off.

  • Keep a positive mental attitude. 

  • Life doesn't end with KD; it just changes. If there is something positive about KD, it is the slow progression of the condition. You shouldn't observe too many problems in the early years. 

  • Seek out support from those of us living with KD. The KDA, the KDA Forum, Facebook, etc. Always remember you are not alone.

  • Most importantly, KD does not define who you are and what you are capable of doing. Observe, adjust and stay active. You might not physically be able to accomplish something the way you used to do it, but it can still be done or you can ask someone to do it for you.

What I thought of later:

  • Dr. Grunseich at the NIH recommended the following. Those of us living with Kennedy’s Disease should avoid high doses of B-6 because it worsens the neuropathy systems. The normal dosage in a multi-vitamin should be fine.

  • He also said that we should consider taking additional supplements of B-12 because it is good for the nervous system.

  • Swallow your pride. It is okay to ask for help when you need it. Others will understand and look forward to helping. 

  • The MDA Clinics are beneficial for those of us living with progressive conditions. There are clinics in most major cities in the U.S. and Canada. I am certain there are similar organizations in other countries. Join one of these groups. They provide excellent support and give you access to certain mobility aids through their "Loan Locker."

  • At some point when mobility has become an issue, consider taking Dutasteride. I feel it has helped me maintain my strength.

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