Canadian Connections

[PiratesWife]

Hi everyone
It’s been two months since my husband was diagnosed and I have been doing my best to educate myself and advocate for him. We are currently doing riluzole, Tudca (Nutricost from Amazon), accupuncture, high protein/high calorie diet, as well as a custom multivitamin (which was approved by our ALS clinic nutritionist).
I’m thinking about trying L-Serine.

I guess I started this thread because I’m hoping to connect with others in Canada in the hopes that we can share information about trials and treatments, medical system stuff etc.

For example did you know that if you are at a certain level of progression here in Canada you can get Amylyx? I was so excited when our neurologist said she has it and could send three months free supply. Then I was disappointed when she said my husband doesn’t qualify to receive it, since he’s not sick enough and they are giving it to people with a certain level of respiratory problems, I think as part of a trial.

We were excited about the news about masitinib, but again disappointed since all the trials for it are not in Canada, hoping that it will be available here this year (as reported in ALS News Today) along with the oral edaravone. I’m still on the fence about radicava it seems like all the treatments, it works for some and not for others.

Genetic testing… still waiting to hear back about that but probably going through the invitae route.
Our neurologist told me that even if she would prescribe the Sodium Phenylbutyrate it would cost about $3000.00 for one month.
Has anyone had any luck with reasoning with pharmacare and asking them to adjust the deductible based on last years taxes vs. Two years ago?

 

[lgelb]

Hi, PW, a couple of notes: It is not a given that masitinib will be marketed this year in Canada. Though it has qualified to be considered under Canada's early approval program, the mfr has 60 days to prepare the application, and Health Canada has 200 days to review it.

The Amylyx compound, however, is under active review in both the US and Canada, with an action date in June for the US. It wouldn't hurt to register your husband with the CNDR, even if he isn't eligible for Amylyx right now, as there will be other research coming out of it.

Here is a fairly up to date list to watch this year, not Canada-specific.

Best,
Laurie

 

[PiratesWife]

Thanks Laurie,
I really appreciate all the time and care you take to support the community here. Im finding this journey is a fine balance of being hopeful and being realistic and practical. This is the best time in history for ALS treatments and it’s my deepest dream that we can see the benefits.

 

[howdoug]

Hi, my name is Doug . I live 8 mi NW of Ponoka, Alberta . I was diagnosed January 8,2001 and given 2-5 yrs to live.. Have been quadriplegic for years now but able to push a bit with my arms . Voice is very quiet most times and use the bipap nasal pillow to assist lots of times . Arm wrestle with my caregiver and this stimulates my breathing . Works best in a pool . My specialist now says I have UMN ALS and exercise is very important and is why I continue to live. She says : "it was the positive proactive way that we dealt with the way the disease approached us".

 

[PiratesWife]

Hi Doug,
Thank you so much for your response. I have family in Alberta, in the Cochrane area, although most have moved out here to BC in recent years. Your journey sounds like it has been challenging and you are apparently up for the challenge! Over 20 years battling this beast, my hats off to you. If I could get another 20 years with my husband that would be a dream come true. Certainly better than the old “2-5 years and good luck” that you get with the diagnosis. Trying to stay positive like you say.

 

[howdoug]

keep in touch

 

[Anit67]

I am in Ontario and was diagnosed in January.

 

[PiratesWife]

The January 2022 diagnosis was rough hey? Like, what a way to start the year. How are things going for you?

 

[howdoug]

I am in a slower progression thankfully . But I do need to continue the struggle . It is very important for me to always do physio stretches range of motion and hold my breath while doing some arm exercises to stretch and maintain lung strength . Since my problem is a dead area between my brain and my spinal cord we need to trigger a response by acting below the brain which is what we are doing . I can't tell my brain to have me take a deep breath. Right now we are able to go to the pool again which works far better but I don't have anyone to help me. My wife is completely wore out by now. I think I am going to have to apply for a TFW which might take some time.

 

[Firefighter58]

Hi guys, I'm Al from Ontario. I at first had rapid progression but luckily it has slowed down. I am now confined to a wheelchair but I still have the use of my hands and arms and can eat and drink in normal way. I have a feeding tube installed when my progression was more rapid but now I only use it for meds. And foul tasting vitamins under the direction of my neurologist ,also I can not speak but my wife nan understand most of what I say..
Al

 

[Mon]

Hi everyone
We are in ontario. Dad dx April 2021. We were not offered Amylyx, however no respiratory involvement. We are not involved in any trials. ALS Canada was in touch and it started the process of helping naviagte the system and what to do as needs arise.

 

[PiratesWife]

Hi Al, thanks for reaching out. How long have you been in the ALS game? Any advice you can give about navigating the Canadian medical system? I’m honestly so discouraged with our neurologists lack of willingness to do… anything. That’s sweet that your wife can understand you I hope that my husband and I will be able to communicate in the same way, his speech has been declining for a year or so now.

 

[PiratesWife]

Hi Mon, I’m sorry to hear about your Dads dx. Please keep us updated if you find any gems or tricks to navigating the medical system.

 

[Mon]

Hi Pirates wife, im sorry you arent happy with your neurologist, thats discouraging. Our general neuro was not great, but the neuro at the clinic is better. It isnt just the neuro, the clinic team is good as a whole. Being in Ontario with a dx of ALS, do you visit a clinic? Have you registered with als canada? Im always checking in on the forum every now and then. If i find anything, i will reach out. Stay strong.

 

[PiratesWife]

Mon, we are in BC which is pretty much the worst place to be for any sort of trials. Our Neuro is through the ALS clinic. And she’s been absolutely indifferent and has given us 0 guidance or suggestions. The team is better than the Neuro and they are pretty helpful and proactive. I have had to figure everything out on my own though as far as supplements and possible trial opportunities. Yes, we are registered with ALS Canada.,