FALS

SpeedyMarie

Member
Joined
May 24, 2019
Messages
14
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
Hello everyone,

It’s been busy down here in Houston. My daughter was married two weeks ago and it was beautiful. I had the privilege to walk her down the aisle. Lots of fun and family.

Last week I had the week of doctor appointments. Confirmed C9orf72 full Mutation >145 alleles. So I have brown eyes, curly hair, a C9orf72 making too much damaged proteins. My neurologist is hopeful to get me in a ASO trial. So had two doctors tell me about getting the bucket list started. Which I have plans for anywho. Life is to be lived especially while I can still travel and walk. I’ve enrolled in the precision medical program through the ALS TDI. Also filled for SSI and Medicare under the compassionate program. I’m hopeful I can use this rotten diagnosis to help other people may a cure be found

So what was very kind last Saturday my sister sent me to a meditation retreat which helped. Hehe trying to meditate with muscle twitching extra credit. I’m starting a gentle yoga class and finding pieces of joy each day. We all will die one day can’t let that get in the way of what matters, living those around you.

One last thing Metlife is bad juju if you know anyone tell them to get AFLAC for critical illness. I’m still fighting to get the $7,500 pay out for ALS of my $90,000 policy. Positive thoughts but I have told them they have 3 days according to Texas law and I will file a complaint to the Attorney General of Texas.

I want to thank the folks that have been supportive and given me tips thank you!
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,183
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Thank you for sharing both the ups and downs.
 
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