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Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 2 days ago
Lynn,
I feel wobbly when I take the radicava. I keep a journal each month and my movement is worse during the 10 days on cycle
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Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 3 days ago
Lynn
I mix relyvrio with warm water. Mix it really well and let it sit 15 min or so to dissolve, then drink it down with a straw. It’s tolerable if it’s mixed well.
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Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 4 days ago
No worries. Thank you
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Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 5 days ago
The Riluzole was approved right away. Radicava was approved with 2 or 3 weeks. Relyvrio my insurance denied and I received it for free through Amylyxx manufacturer while the appeal process took place. It took a few months for it to ultimately be approved.
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Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 5 days ago
Thank you. It’s for me though not my husband. I will let you know how things go.
Maryann
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Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 2 weeks ago
Joan
How do you feel on regimen f. I take riluzole, radicava and relyvrio and I started regimen f 4/25. Do you notice any changes with regimen f?
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Maryann posted an update 2 weeks, 1 day ago
Anyone have opinions on best mobility scooters?
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Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 3 weeks, 1 day ago
I take Riluzole, Radicava, RELYVRIO and 2 weeks ago I started Healey Platform regimen f (Abbv 7262) – hoping I am on the drug and not the placebo but it’s 3 to 1 so I’m hopeful. I notice I am more wobbly when I take the Radicava 10 days out if the month.
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Maryann posted an update 3 weeks, 1 day ago
I have been stretching, exercising trying to keep my mobility. I use a rollator and I have a carbon fiber afo for my left leg (drop foot). My left hip has gotten weaker. I ordered a rebounder to see If I could get any strength back to help my gait. Dagmar – the rebounder you have is no longer made. Anyone else have success building hip strength?
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Maryann posted a new activity comment 3 weeks, 3 days ago
Hi Diane
I stretch everyday, do pt excercises, sometimes chair yoga. I think it does help. I do notice if I over do things I feel more tired and if I skip stretching my movements are worse. -
Maryann posted a new activity comment 1 month ago
Thank you. I read your blogs and it helps me tremendously Dagmar!
I skipped out on my leg excercises last night after telling my husband I needed to do them. This morning my left leg was worse. Hip and lifting the leg was more difficult. Still having trouble getting up from the floor. But I did my leg excercises this morning and 2 squats!-
Yes, Maryann… isn’t it strange how quickly our ALS-bodies can weaken from missing even just one day. I’m proud of you for doing 2 squats – – I encourage you to do 2 every day this week. Then next week, do 3 🙂 I’m also proud of you for being able to get onto the floor – – do you use a chair for that too?
Here is a YouTube site that I follow.…[Read more]
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Maryann posted a new activity comment 1 month, 1 week ago
Hi Dagmar
I was diagnosed with ALS in December 2022. I was very active prior to symptom onset ( foot drop, hand weakness) August 2022. I am trying to do daily excercises to keep my body moving. Any suggestions on how to help strengthen the body to get up off the floor after exercising? I am doing rocking and practicing rolling over.-
Hi Maryann, it’s so good to hear that you are exercising! I’ve found the best – – and safest way to get up off the floor is to use a chair. (I still do) Just using will help build your strength as well. I recommend a sturdy chair with arms. Here are 2 videos showing different methods,…[Read more]
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Thank you. I read your blogs and it helps me tremendously Dagmar!
I skipped out on my leg excercises last night after telling my husband I needed to do them. This morning my left leg was worse. Hip and lifting the leg was more difficult. Still having trouble getting up from the floor. But I did my leg excercises this morning and 2 squats!-
Yes, Maryann… isn’t it strange how quickly our ALS-bodies can weaken from missing even just one day. I’m proud of you for doing 2 squats – – I encourage you to do 2 every day this week. Then next week, do 3 🙂 I’m also proud of you for being able to get onto the floor – – do you use a chair for that too?
Here is a YouTube site that I follow.…[Read more]
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Maryann became a registered member 1 month, 1 week ago
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Hi Maryann,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]
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Hello Maryann,
Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]
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Hi Dagmar
I was diagnosed with ALS in December 2022. I was very active prior to symptom onset ( foot drop, hand weakness) August 2022. I am trying to do daily excercises to keep my body moving. Any suggestions on how to help strengthen the body to get up off the floor after exercising? I am doing rocking and practicing rolling over.-
Hi Maryann, it’s so good to hear that you are exercising! I’ve found the best – – and safest way to get up off the floor is to use a chair. (I still do) Just using will help build your strength as well. I recommend a sturdy chair with arms. Here are 2 videos showing different methods,…[Read more]
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Thank you. I read your blogs and it helps me tremendously Dagmar!
I skipped out on my leg excercises last night after telling my husband I needed to do them. This morning my left leg was worse. Hip and lifting the leg was more difficult. Still having trouble getting up from the floor. But I did my leg excercises this morning and 2 squats!-
Yes, Maryann… isn’t it strange how quickly our ALS-bodies can weaken from missing even just one day. I’m proud of you for doing 2 squats – – I encourage you to do 2 every day this week. Then next week, do 3 🙂 I’m also proud of you for being able to get onto the floor – – do you use a chair for that too?
Here is a YouTube site that I follow.…[Read more]
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