Your story is my story

Yesterday I received an email from a man who was recently diagnosed with Kennedy's Disease. He asked for my thoughts on how long he could work (a physical job) and if he should continue to run (his passion). After replying, I reread my response and decided to share some of these thoughts with you.

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Your story is my story, as well as the story of so many others with our condition. We all have a learning curve, and I continue on that path, wondering, asking 'what if', experimenting, and all the while hoping for a treatment that will arrest, or at least slow, this mutant carnivore of motor neurons and muscles living inside me.

Advice is cheap, so I will just lay out some thoughts for your consideration.

• Learning to live with Kennedy’s Disease is a daily process of adapting, leveraging, and substituting, 
• Develop a close working relationship with a doctor that you trust - someone you can confide in. 
• Work as long as you can, but be smart and safe about it. 
• Run like the wind and feel the joy of your body performing like it is supposed to. 
• When you can no longer safely run, jog or walk. Just stimulating the muscles and motor neurons is healthy and fulfilling. 
• Stimulate your mind every day - it is a 'muscle' that will help you through the tough times. 

Push yourself, but not too far. Over-use of the muscles (pain, cramping, weakness and extreme tiredness) is the signal that you overdid. Learn from it. As the condition progresses, use the 70% rule. It has been a good guide for me in my senior years.

• Embrace your spirit, but listen to your body. 
• Don't give up on your dreams, but temper them with realism. 
• Live for today, but plan for tomorrow - because eventually tomorrow arrives. 
• Pessimism and fear are cancers of the mind - don't allow them to gain control of your life. 
• Frustrations, falls and injuries are part of our growth process - learn from them. 
• Become comfortable asking for help - there are times when you will need it. 
• Inability is not the same as giving up - adapting to your capabilities is part of the growth process. 
• Every day find moments to be thankful for the life you have been given. 

And, most importantly, always remember … YOU ARE NOT ALONE!