Curious about support

[Howlaway]

We've all seen the glitz and glamour of the work being done by the ALS Society of Canada. My own experience with them was a massive disappointment ( detes on request) but I now wonder, are their others out there feeling disenchanted?

 

[ShiftKicker]

I admit, I took my cue from the ALS clinic itself (low engagement, have to push for everything) where I am and really didn't expect anything at all. I get a quarterly (?) newsletter about fundraising, fluff about research, and local support groups, but there has been no direct outreach. I did contact them once to ask about something from the loaner closet but was told they had nothing available and then was told they have a donation program where I can leave them equipment and money in my will.

 

[Nikki J]

I am so sorry you both had miserable experiences. Do you have chapters like ALSA in the US used to be? Are some areas better than others do you know?

 

[Howlaway]

My experience is somewhat similar to Shiftkicker. ALS clinic neurologist was bugging me to get a walker so reached out to the ALS Society and got a runaround in excess of 3 months. I discovered they're only a few hundred to buy so got my own. So to answer your question Nikki, yes there are regional offices but all under the umbrella of ALS Canada. Some quick research showed they were sitting on a $16M reserve fund and spend 34% of their expenses on fundraising. Its a private 'charity' that gets millions in government funding plus private donations but they really come across more as a marketing company ( again look at Shiftkickers will/equipment remarks. ) So who watches them? If I find more people with ALS are being treated poorly then I will bring this up with my MP.

 

[drewidia]

Echoing Nikki's point... I thought places like ALS Alberta etc do loaner and advocacy similar to the US.

In Chicago we have several amazing support organizations including Les Turner and others who work the ALS Clinics (which are incredible albeit a whirlwind tour and I would strongly suggest sending in things you want / need to the clinic in ADVANCE of going).

The support orgs fill the gap between the clinic and you. They help advocate as well.

I have been VERY impressed with the overall help. (Many have "loaner closets"), as insurance, Medicare and i'm sure national health (kind of like our VA) is SLOWWW.

The REAL nugget for Me was - I have also come to realize is these organizations can help "connect" you with local families for things like beds, etc. are available but you need some help in "getting them" to you.

For instance like the comment above, while a walker is inexpensive, sometimes there are folks around you who's PALS no longer needs the equipment and are happy to pay it forward. I would hope local organizations can connect you as well.

While you still have to advocate for you own care / needs is still relevant but many of them will bend over backwards to help! I never took it as a lack of interest if things took a while but they - unlike us - are multitasking and the process stuff they deal with is quite involved.