ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,346
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
I have refrained from commenting so far as I didn't want to colour with my own disappointing experience with the same clinic and clinician. I am sorry you've also experienced the same and I know others who've attended there have also run into a very conservative approach to ALS.
I know it's a bit more work at the outset, but I highly recommend building a team closer to you on the Sunshine Coast and possibly coordinated by your GP. The BC ALS Association has a lending closet for equipment and some other resources for caregiver support, I am hoping the clinic in Vancouver has already signed you up for membership? I do also very much appreciate the social worker associated with the clinic- they can provide all sorts of assistance with regards to financial aid for a variety of accessibility needs, equipment, discounts, etc.
You are not beholden to the ALS clinic in Vancouver, though I do understand why you'd want to know about research and up to date info on trials- that clinic, sadly, is not the place for it. I have looked for studies and trials on my own and applied and participated in a couple without recommendation from the neuro.
I am glad you've found this forum- lots of information and knowledgeable support.
~F
I know it's a bit more work at the outset, but I highly recommend building a team closer to you on the Sunshine Coast and possibly coordinated by your GP. The BC ALS Association has a lending closet for equipment and some other resources for caregiver support, I am hoping the clinic in Vancouver has already signed you up for membership? I do also very much appreciate the social worker associated with the clinic- they can provide all sorts of assistance with regards to financial aid for a variety of accessibility needs, equipment, discounts, etc.
You are not beholden to the ALS clinic in Vancouver, though I do understand why you'd want to know about research and up to date info on trials- that clinic, sadly, is not the place for it. I have looked for studies and trials on my own and applied and participated in a couple without recommendation from the neuro.
I am glad you've found this forum- lots of information and knowledgeable support.
~F