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Joan replied to the topic ALS Community Spotlight: "Living with ALS has brought many changes, but we ‘keep on keepin’ on’” in the forum ALS Awareness Month 2 weeks, 5 days ago
I still go to church most every day
we play cards with friends or see movies or I let them drink and eat it doesn’t bother me to not be able to participate as long as I can be part of the conversation even if it’s with my phone! We go to peoples houses or they come here and just hang and talk. We’ve gone to the botanic gardens, me in a wheel…[Read more]
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Joan replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 2 months, 1 week ago
The new Healy regimen F
with targeting tfp43
joan
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Joan replied to the topic Favorite methods for holding head up in the forum Living With ALS 3 months ago
I can’t hold my head up either
the soft collars work marginally
I have a hard class but rarely use it
the best one for myself o found on Amazon called comfy med. Comes in sizes and not expensive
Joan
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Joan replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 5 months ago
I have it but my cytokinetics drug raised my liver and can’t start the relyvrio until liver is normal
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Joan replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 5 months ago
I have it but my cytokinetics drug raised my liver and can’t start the relyvrio until liver is normal
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Joan replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis Information and General Questions 1 year, 3 months ago
Please se a neuromuscular doctor and no one else
It’s important to see the correct specialist and it should not take a year. It is a diagnosis of exclusion -
Joan replied to the topic C9 research in the forum Research Topics 1 year, 4 months ago
I have the C9 defect. what study are you in and through whom or where?
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Joan replied to the topic Is NF-L in CSF Lumbal Puncture a reliable BioMarker? in the forum Diagnosis Information and General Questions 1 year, 4 months ago
I suggest a second opinion and if you have the means I would go to Mass general . Fasciculations are a hall mark of ALS. no other disease causes them
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Joan replied to the topic Understanding PFT in the forum Diagnosis Information and General Questions 1 year, 8 months ago
You need to see a pulmonologist ( lung doctor) specializing in ALS
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Joan replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 8 months ago
Jim
the amx0035 is in a phase 3 trial Phoenix and is applying for expanded access also which you could qualify for potentially
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Joan replied to the topic Alternative Medicine and ALS in the forum Living With ALS 1 year, 9 months ago
Thank you
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Joan replied to the topic Dude about diagnosis in the forum Diagnosis Information and General Questions 1 year, 9 months ago
I would not wait but see an ALS expert and they are hard to find
She needs to have everything else excluded but then should consider treatment now and not wait
You never know how long you have to livei had to go to another state to see the correct doctors
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Joan replied to the topic Dude about diagnosis in the forum Diagnosis Information and General Questions 1 year, 9 months ago
I would not wait but see an ALS expert and they are hard to find
She needs to have everything else excluded but then should consider treatment now and not wait
You never know howling you have to live -
Joan posted a new activity comment 1 year, 9 months ago
Thank you
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Joan became a registered member 1 year, 9 months ago
Hello Joan,
Welcome to the forum! I am one of the forum moderators and 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 typing a…[Read more]
Thank you