stellfox
Member
- Joined
- Aug 25, 2009
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 05/2021
- Country
- US
- State
- MA
- City
- townsend
After being a member of this forum for some time as a family member of SOD1 family with the loss of my dad, brother and sister all within 4 years about 12 years ago - as well as being tested positive for the SOD1 - A4V gene 10 years ago and a patient in the Miami trials for about 8 years - my time has come to join the others in this one way path. It’s a devastating thought as I am sooo well aware what the path entails- the damage again to our families physiological health is once again rearing it’s ugly head ! My kids hope there is some kind of hope in new therapies but being a veteran of the system makes me more realistic. I wish I was more unaware of the days and months to come.
My broken ankle in January was the catalyst and for a few weeks all seemed well but progressive weakness in the quadricep made the surgeon send me for EMG and the neurologist ( a horrible doctor) said to me at conclusion “it’s all over “ which honestly I took as 2 meanings - 1 being - you’re done for and 2 being it is everywhere - not a great bedside manner and the left the room - - so the last walk is beginning and the course will be short as all 3 of my family members were gone in 10 months - glad to have this forum for venting as it is painful for family
My broken ankle in January was the catalyst and for a few weeks all seemed well but progressive weakness in the quadricep made the surgeon send me for EMG and the neurologist ( a horrible doctor) said to me at conclusion “it’s all over “ which honestly I took as 2 meanings - 1 being - you’re done for and 2 being it is everywhere - not a great bedside manner and the left the room - - so the last walk is beginning and the course will be short as all 3 of my family members were gone in 10 months - glad to have this forum for venting as it is painful for family
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