Canadian Connections

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ShiftKicker

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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
 

Mon

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Thats good you are registered with ALS Canada. Wow ive heard vancouver BC has unacceptable clinic in a basement of a hospital. There is a advocate on instagram, fb and twitter named Greg Gowe. I follow his posts. He is a lawyor, retired due to ALS. He is always pushing for better for ALS and often mentioms how bad it is in BC. He would fly to montreal for trials according to his posts. Id take a look at his stuff, and drop him a line. He might be able to provide info in regards to system in BC. There are alot of strong Canadian advocates on social media, pushing for better. I am very aware of no trials in BC because of the advocates online.
 

Snowbird270

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Apr 18, 2020
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Delta
Hi Pirates Wife,
I too am in BC, I advice you to ask question on this forum about treatments options and once you have decide, be firm with your neurologist at the clinic. I allowed myself to be talked out of taking any meds. Now I’m too late for one, and found out the other is most effective at the beginning of this disease. Seattle is currently running a drug trial, it depends what meds, you are taking and how long you have has ALS. They also have more coming up.
All the best.
 

Firefighter58

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Hi there Pirateswife, in answer to your question I was diagnosed in 2014, in so far as communication goes I use an iPad with a text to speak app that is free on Google it works well for communicating with people and sometimes even with my wife. I myself don't worry too much about treatments or testing, I really depend on my neuro. on my visits every 6 months. I find to best and most reliable help comes from the ALS society, they supply pretty much all my needs like wheelchairs, comodes hospital beds walkers and the like all free of charge. They also supply all needed advice on any new programs available or any new devices that are available. they also supply my PSW's that come every morning to get me washed and dressed this is also at thei expense.. I hope this info helps
Al
 

Dwest

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Hello PW! I visit this forum because my husband as too has been diagnosed. Our diagnosis was in Feb 2019. We are near Niagara in Ontario.
Through out 2018 as we were doing test after test, then it boiled down the w ALS specialist. After a couple visits and the diagnosis, and a couple more visits, my husband determined that there was sadly never any good news from it.
He since has decided that that it would only be our GP to care for him.

We have found certain things take his energy away, and it’s difficult to recoup. Stress from emotions, anxiety seeing the doctor, and in the beginning if he fell, it would take a bit of energy and strength away. Instead of worrying and stressing about falling, I decided that we would just use the hoyer lift for transfers.

Don is still able to speak, chew and swallow. He has some stomach strength left for sitting , ( once I get him there ) and he breathes with the assistance from the trilogy bi pap machine. He doesn’t want a feeding tube or tracheotomy.

I work for Canada post and was on a part time afternoon shift for 2018 and 2019. Then in February 2020, he took a stumble. Although we have LifeLine, it was determined that he was too weak to move on his own and with his air out of reach, he could suffocate before help arrived. I’ve been off ever since.

It’s been tough, but we keep going. For the mist part, we can find humour in almost everything.

Thanks to everyone,
Darlene
 

PiratesWife

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CALS
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CA
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Hi Canadian friends,
A question, have any of you in Canada been able to get nuedexta? Our neurologist says it’s not available here and tried to offer us anti-depressants which my husband doesn’t want. I’m more interested in the aspect of helping speech and swallowing for my husband which I hear from some is a benefit. Apparently it’s a combo of quinidine and dextromethorphan. Neither are very pricey alone.. possibly could be compounded at a pharmacy? We are four months after bulbar diagnosis and around a year and a half from symptom onset, mostly it’s just his speech affected and some loss of muscle in his right hand. The main thing I notice is stress makes it worse, but when he is happy, rested and relaxed his voice is almost normal. Catch 22 how can you be happy rested and relaxed facing a terminal diagnosis with a young family. Currently doing riluzole, Tudca, L-Serine, multi vitamins and about to start BASIS (nicotinamide riboside (NR) + Pterostilbene.) I’m looking into starting a broccoli sprout regiment because I’m hearing good things about Nrf2 as treatments.
 

lgelb

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This thread and others (don't forget the search box up top) may help as regards the Nuedexta.
 

ShiftKicker

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I know another member here used a compounding pharmacy (MacDonald's Pharmacy on W Broadway in Vancouver). I believe she really had to push for the prescription, but she eventually succeeded.
 
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Firefighter58

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PALS
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Oakville
For what it is worth, I have found very few drugs worth taking. There is no magical cure for ALS, I take antidepressants to put me in a better frame of mined and a host of vitamins as directed by my Neurologist. other than that I try to live life as best as I can. I wake up every day looking forward to the day, I didn't invite ALS into my life and I will be damed if I will let it control my life.
Al
 

PiratesWife

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CALS
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05/2022
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CA
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Gibsons
Hi everyone,
A couple questions and an update. Today we saw our family doctor, who is amazing, she immediately prescribed the b12 injections we asked for and is very supportive of anything we want to try and will be open to prescribing whatever she can within reason. She also has been very unimpressed with our ALS clinic, they have been very unresponsive and her words were “unprofessional”. She suggested we may want to see if we can remotely see another ALS neurologist in Canada… all our clinic appts are remotely anyways. So, does anybody know of any great neurologists via ALS clinics in Canada? I figure it’s worth a shot to ask here. There is the new Project Hope project via UBC , they will apparently be announcing the head neurologist for that soon (ish?) I have considered asking how soon and when they will be accepting patients. I keep thinking that timeline is years that we might not have…

Thank you everyone for being here, sending greetings to all our fellow Canadian PALS and CALS.
 

Firefighter58

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Joined
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Messages
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PALS
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My neurologist is 100 percent, very thorough and very up to date. He communicates with my GP on a regular basis. He heads the ALS clinic.Doctor John Turnbull of McMaster Health Science Center in Hamilton Ontario
Al.
 
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Snowbird270

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PALS
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Hi pirate wife, I’m from BC too. I found out, we can be in trials in Seattle, USA. I believe they have 2 trials at present, one is oral riluzole.
You may want to look into it. I found out you have to go on Riluzole within two years of having ALS or it is not covered under bc medical. Perhaps if your husband participates in the Seattle trail of oral Riluzole,when the trail has ended maybe the oral form will be offered here in BC and he can will qualify for Riluzole. Unfortunately I found out to late for me and lost the opportunity. It’s a good trail as everyone gets the Riluzole, its just different doses.
 

Nikki J

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Snowbird did you mean radicava rather than riluzole? The oral Radicava trial finished and the oral form was recently approved in the US. There are new trials happening all the time though. It looks like there is a site for the Healey platform trial in Seattle and maybe Ibudalast is still recruiting. ( clinicaltrials.gov is not always updated it says radicava is recruiting and it is finished as I said)
 

Dwest

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Hello, my name is Darlene. My husband is Don. He was diagnosed in January 2019. We are in Grimsby ON.
 

Snowbird270

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Delta
Hi Nikki, yes I did mean Radicava, the trail was still recruiting a 2-3 months ago, I was going to go in it, but I’m over the two year mark. May-be it is closed now? I will look into other trails. Thanks for spotting my error!
 
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