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A Message from Cathy...
I hate to explain this on email, but I'm wiped out --so here goes. I don't know if you all ahve heard that I've been seeing a neurologist since just after Thanksgiving,doing many, many, tests,etc. For awhile, I've been having the symptoms of early ALS, amyotrophic lateral sclerosis (also known as Lou Gerhrig's Disease.)
I got my DNA results Tuesday. I have the same gene mutation as my brother Larry. This is bad and sad news. So, here we go on a wild ride. I am being referrred to the ALS specialists in Sacramento.
ALS is a terminal illness. There is no cure. The only treatment, really, is to keep me as comfortable as possible. Right now, by biggest problems are extreme fatigue, fasiculations, increasing muscle weakness & loss, and my right shoulder and arm are sore & bothersome. However when you see me right now, you might not be able to tell.
I started warm water therapy yesterday at Davis Atheltic club and it felt really good. For those moments, my body did not hurt. I'll be doing some wacky sleep lab tests at Sutter Hospital in Sac in the near future.
I will be offering to help the ALS researchers at Northwestern Univ in Chicago where my brother Larry and I and some family members are part of a clinical DNA study.. I want them to use me (my body) all they want , so maybe I can help find the cause and cure, or at least something to help fight ALS in the future.
My brother Larry died of ALS in june.(Linda and I were his primary caregivers.) My mom died of it at age 52: she was 49 when she was diagnosed. I am 49. My mom's aunt died of it when she was 54. so, what I've got is familial ALS, whcih is the more rare type.
I am an "open book" about all of this, so please feel free to ask questions, express your feelings etc. I am so sad for Linda. We are making a new CD, and hope to release it in 2009. I need to sing while I can. My ability to sing and talk will be greatly affected down the line.
I intend to work as much as I possibly can so I can keep my health benefits and earn some more PTO.
So for all of us---Now is the time to have fun and celebrate love , life and laughter, and SONGS!
With lots of love and gratitude to you for your enduring friendship and good humor, and nasty jokes.
xxoo,
Cathy Speck
PS more info is available at www.alsa.org
you may share this info with anyone/everyone
I got my DNA results Tuesday. I have the same gene mutation as my brother Larry. This is bad and sad news. So, here we go on a wild ride. I am being referrred to the ALS specialists in Sacramento.
ALS is a terminal illness. There is no cure. The only treatment, really, is to keep me as comfortable as possible. Right now, by biggest problems are extreme fatigue, fasiculations, increasing muscle weakness & loss, and my right shoulder and arm are sore & bothersome. However when you see me right now, you might not be able to tell.
I started warm water therapy yesterday at Davis Atheltic club and it felt really good. For those moments, my body did not hurt. I'll be doing some wacky sleep lab tests at Sutter Hospital in Sac in the near future.
I will be offering to help the ALS researchers at Northwestern Univ in Chicago where my brother Larry and I and some family members are part of a clinical DNA study.. I want them to use me (my body) all they want , so maybe I can help find the cause and cure, or at least something to help fight ALS in the future.
My brother Larry died of ALS in june.(Linda and I were his primary caregivers.) My mom died of it at age 52: she was 49 when she was diagnosed. I am 49. My mom's aunt died of it when she was 54. so, what I've got is familial ALS, whcih is the more rare type.
I am an "open book" about all of this, so please feel free to ask questions, express your feelings etc. I am so sad for Linda. We are making a new CD, and hope to release it in 2009. I need to sing while I can. My ability to sing and talk will be greatly affected down the line.
I intend to work as much as I possibly can so I can keep my health benefits and earn some more PTO.
So for all of us---Now is the time to have fun and celebrate love , life and laughter, and SONGS!
With lots of love and gratitude to you for your enduring friendship and good humor, and nasty jokes.
xxoo,
Cathy Speck
PS more info is available at www.alsa.org
you may share this info with anyone/everyone
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