Saturday, April 9, 2011

You are not alone

When you first find out you have this rare condition, you often feel all alone in this world.

Accepting that you have Kennedy’s Disease is often difficult.  So it is natural that you want to reach out to find others that also live with the condition.  Unfortunately, this is often difficult.  Yet, it is important because it helps us move towards acceptance. 

For many of us, knowing that others have this condition and they are surviving helps.  We also need to hear from the “horse’s mouth” (others with the disease) that it is okay to feel the way we do.

Often it is the spouse or a caregiver that makes the first inquiries.  And, when a person reaches out for support, they immediately run into problems.
  • They find there are very few people who have ever heard of the disease.
  • Another issue is that it is almost impossible to find a local support group … some place where you can talk with others that have the same condition … is very difficult, if not impossible.
  • To further complicate the problem is your family doctor probably has never treated nor even even heard of the disease.  (I had to educate three of my doctors)
So where do you go when it is finally time to reach out?  For me, it was the Kennedy’s Disease Association and its twice a month chats.  When I first joined the chat room I found it difficult to open up.  I wanted to come across as being strong (I can handle it) because I had not totally come to grips with what having this condition means.
chat room

What I found in those first few chats were others, just like me, that were seeking answers and support as they moved towards acceptance.  They were also looking for a place they could express their concerns and fears without alarming the rest of the family.  And, most importantly, I wanted to hear from doctors and researchers that there was the possibility of (hope for) a treatment or cure.

Today, I am probably considered an “old salt” (a Navy term).  For ten years I have been attending these chats and participating in the KDA forums.  Yet, these chat rooms and the forum are still important to me.  They are not only educational, but they are a way to help others as well as seek answers and socialize (make friends). 

I know that I am not alone in my quest.  I also know that others have found ways to survive and thrive while living with this condition called Kennedy’s Disease. 

And today, I just wanted to say that …
you are not alone.”

chat room joke

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