Canadian Connections

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Snowbird270

Member
Joined
Apr 18, 2020
Messages
13
Reason
PALS
Diagnosis
02/2020
Country
CA
City
Delta
Hi, also to correct my above note, it is also Radicava that I could not go on as I was over two years of on-set ALS.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,880
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
If your symptoms are under 3 years the Healey platform may be possible
 

PiratesWife

Member
Joined
Jan 12, 2022
Messages
28
Reason
CALS
Diagnosis
05/2022
Country
CA
State
BC
City
Gibsons
Hi everyone,
Just thought I would update on how we are doing and see how everyone else is doing. It appears my husband is experiencing a plateau, his ALSFRS score is the same now almost in August as it was at the beginning of January when he was diagnosed. I don’t know if this is because of the supplements, riluzole and accupuncture, or if he is just naturally slow progressing. He was diagnosed with bulbar onset but we think his symptoms started in his hands over the last 5-6 years if we look back. You don’t often hear about slow progressing bulbar onset but it appears that is what we are dealing with here. I’m hoping that we can continue at this rate and hang in there for better treatments over the next 5-10 years. Has anyone else experienced at plateau like this? How long did it last? We are past the 6 month mark now. Currently doing broccoli sprouts, daily hi protein/hi calorie smoothies, riluzole, liposomal gluatathione, Basis, Tudca, olive leaf extract, B12 injections at home and high dose B thiamine.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,880
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Happy that he has been stable. I do have a friend who is slow bulbar 4 plus years can still eat most things and their family can mostly understand their speech. Not sure if they have had defined plateaus but certainly slow, especially for bulbar.
I am limb onset , very slow progressing and have had several definite plateaus and more times when my frs was stable but I felt some progression.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,976
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
We have an amazing advocate for ALS here in Australia, Neale Daniher. He was diagnosed in 2013 and still does amazing advocacy.
I don't think it really matters what is the reason, keep doing what you are doing.
Good to see you post and let us know how you are both doing.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
715
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
I also have slow progression, after 8 years I can't speak and confined to a wheelchair but other than that I feel fine. I still eat and drink in the normal way, steak and buttermilk are my favourites and the occasional beer. I always look forward to tomorrow.
 

PiratesWife

Member
Joined
Jan 12, 2022
Messages
28
Reason
CALS
Diagnosis
05/2022
Country
CA
State
BC
City
Gibsons
Firefighter: thank you for sharing your journey, it gives me so much hope!
Affected: Australia sounds like a good place to be for ALS trials and advocacy, that is awesome. Myself, I am struggling to mentally stay positive but trying to take it one day at a time and find those moments of happiness. It’s hard with very young children to not worry about the future.
Nikki J: that gives me so much hope to hear about other slow progressing bulbar onset PALS. It always seems so grim when you look into prognosis for bulbar onset, it’s nice to know there are other people out there beating the odds. I’m happy to hear that your progression is also slow, sometimes I feel like in this journey if we can just hang in there for another few years there will be some real hope. It breaks my heart to know that for so many there isn’t that kind of time.
 
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