juvi plser
New member
- Joined
- Aug 21, 2012
- Messages
- 2
- Reason
- DX UMND/PLS
- Diagnosis
- 06/1994
- Country
- US
- State
- Maryland
- City
- Frederick
Hi,
I'm new to this board. I'm 43 years old and have had PLS since I was about 8. I refer to PLS as my life sentence as its been a good 35 years since I have had a normal gait, balance, etc . I'm married to a very loving and helpful husband and we have 2 children together. He, nor our kids, have ever seen me walk properly. My diagnosis has flip flopped from PLS to PPMS and now back to PLS. My question to this board is:
What is it going to take to get qualitative research where we can get some relief?
I exercise every day for as long as I can and I'm scared to death not to. I wear Bioness devices on both legs, take Nuvigil, take multivitamins as I am sure all you do too to lessen your symptoms.
I understand PLS is rare. I understand some physicians believe PLS becomes ALS. But someone somewhere MUST have an understanding on how it works and how to make it go away.
Does anybody know of anything that provides relief from this dispicable disease? I am done with this it. I'm ready to start living my life and it will not let me.
Thanks!
I'm new to this board. I'm 43 years old and have had PLS since I was about 8. I refer to PLS as my life sentence as its been a good 35 years since I have had a normal gait, balance, etc . I'm married to a very loving and helpful husband and we have 2 children together. He, nor our kids, have ever seen me walk properly. My diagnosis has flip flopped from PLS to PPMS and now back to PLS. My question to this board is:
What is it going to take to get qualitative research where we can get some relief?
I exercise every day for as long as I can and I'm scared to death not to. I wear Bioness devices on both legs, take Nuvigil, take multivitamins as I am sure all you do too to lessen your symptoms.
I understand PLS is rare. I understand some physicians believe PLS becomes ALS. But someone somewhere MUST have an understanding on how it works and how to make it go away.
Does anybody know of anything that provides relief from this dispicable disease? I am done with this it. I'm ready to start living my life and it will not let me.
Thanks!