Recent content by Gizzmo

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    My father was diagnosed in August and is already ready for EOL care

    Thanks for good advice on the car shows never heard of them but we will check them out. He does do some games on his computer and does enjoy sitting looking outside in the woods. Deer, squirrels all the wild life we have around us. I hold his hand a lot and give him little hugs as I walk by or...
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    My father was diagnosed in August and is already ready for EOL care

    Rick is getting his electric wheel chair tomorrow. Hopefully this will help him feel a little more independent .Also help with his neck and head problem being able to tilt it back. I just wish I knew how to help him feel better about what he can do. He so depressed about everything which I...
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    Dropped head syndrome

    My husband was diagnosed Dec 2022 and has this with his head and neck. He is no longer able to hold his head up on his own he can for a few seconds till I can get his neck brace on and fitted. The top of his back up to his neck is curved forward really bad. I was looking for a plastic neck...
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    My father was diagnosed in August and is already ready for EOL care

    I am truly so sorry. Its a terrible thing to be going through and who do you talk to about your true feelings? My husband was diagnoses a year and half ago. He is the same way was active out in our woods and restoring old cars. Now its all gone and he feels useless just sitting there . His...
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    Sept 29 FDA and Nurown

    This is just so sad to be voted down. Shouldn't it be up to the patient if they want to try something like that . What would it really hurt they don't have nothing else to try. They were fast to push that Covid shot through with out years of research. Does anyone know if there is something...
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    Any gadgets to help with pulling on clothing?

    I could use some advise also in this problem. My husband has the same like your niece does with the use of arms. I have been struggling trying to find something that would help him and me. His pants I had the seamstress remove the snap and turned it in to a long piece of Velcro strip with same...
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    Sept 29 FDA and Nurown

    I hoping that the FDA will pass this Nurown Sept 27 it will give so many people some hope for living. While right now there really is not much to help. Wondering if anyone else did much reading up on this it really sounds very promising. There a link on here to be able to watch the hearing...
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    Assistance TechnologyDevice Wishlist

    I know exactly what you mean about your arms my husband has the exact same thing. His arms moves just to his waist would be nice to have something like that . Finding a way to eat would be great to get his arms and hand up to his mouth also.
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    AKV9 from Silverman Lab/Northwestern offers hope.

    How does this MassGeneral/Healey ALS Platform Trial work for a person that lives in Wisonsin ? Are there Doctors around here or a a few states away that are in this ? Sounds intresting and some kind of hope Thanks for any help on this
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    Help with Clinical Trials

    Hi, I have a question about clinical trials . My husband has ALS and has been taking Riluzole 50 mg and Relyvrio 3-1 g pack . He would like to go in to a clinical trial but not sure where or how to begin it. I see there are some new drugs that seem hopeful but how do you get into them? I talked...
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    Relyvrio taste

    My husband has been on it for a few months yes the tasted is horrible but hoping it is working. Dark chocolate seems to help a little after drinking it very little. Good luck
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    PALS opposed to feeding tube

    I am gald you asked that question I have been thinking about this for a while . My husband has ALS for about a year and half but not sure what kind. He has pretty much lost the use of his arms. His hands and wrist work but cant bend the elbow up raise his arms . He wants no talk about it and...
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    Jeff

    So sorry for your loss hugs and prayers for you and your family ❤️
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    Tofersen?

    I have a few question because this all so new and confusing to me. My hubby is on Riluzole and Relyvrio along with a lot of other meds for Als sysmtons from a few depression and meds to make him hungry . He had a lumbar puncture to see if it would show some answers. The C9ORF72 says negative...
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    Riluzole and side effects

    Filled my hubbys at Aurora pharmacy in Wisconsin with no problem hopefully yours will also be filled soon
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