@jeebles
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Gail A started the topic Recommendations for a head mouse in the forum Mobility Aides, Assistive Technology and Medical Equipment 6 days, 19 hours ago
I think that my husband would benefit from using a head mouse to control his computer and speech generating device. We got an eye gaze last year (Tobii) as his hands were failing and he could no longer type. But he has found the eye gaze technology difficult and frustrating to learn and to use. We got awesome support getting it up and running, but…[Read more]
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Gail A replied to the topic Removing phlegm-mucus from throat in the forum A Forum for ALS Caregivers 2 months, 2 weeks ago
My husband takes Glycopyrrolate prescribed by his neurologist at the clinic we attend. He also has taken Guiafenesin (plain Mucinex or Robitussin) for excess mucus as necessary. He uses a VOCSN machine which provides the following functions: ventilation(BiPap), oxygen. Cough assist, Suction, and Nebulizer. This is a great machine, invented by a…[Read more]
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Gail A replied to the topic The love of my life ( Kenneth E Steadham) in the forum In Loving Memory 3 months, 4 weeks ago
Shannon, My heart breaks for the loss of your dear Kenneth and the feelings of grief and sadness you must feel. Your devotion to him must have been comforting to him and a comfort to you now. You and your family are in our prayers.
Gail
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Gail A replied to the topic Loose bowel movements in the forum Living With ALS 4 months ago
My husband has a PEG tube and occasionally issues with diarrhea. He takes nothing by mouth any longer, tube fed mainly with formula. I have found that that a dose or two of Imodium slows motility a bit which is helpful. Also, giving him things to increase fiber allows absorption of water and of course nutrients too. For that I give him Metamucil…[Read more]
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Gail A replied to the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 9 months, 3 weeks ago
Thanks Jim. I did have a look. It seems like a very good chair. Just wish these weren’t so expensive and that you could get a test drive.
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Gail A replied to the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 9 months, 3 weeks ago
Thank you for sharing your thoughts and suggestions. We had our bathroom remodeled last year with, most importantly, a zero entry shower. I purchased a “Shower Buddy” chair which has worked well for my husband since November. But now I wish I’d known that he would eventually need a reclining shower chair. I would have purchased such a chair to st…[Read more]
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Gail A replied to the topic EXCESS MUCUS in the forum Living With ALS 9 months, 3 weeks ago
There are prescription meds that can help. My husband has been taking Glycopyrrolate since 2019 and that has been very helpful. His doctor recently added Guaifenesin to thin mucus that collects in his throat sometimes. He has a VOCSN machine with cough assist and suction as well as ventilation. Hopefully you are seeing a neurologist at an ALS…[Read more]
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Gail A posted an update 10 months, 1 week ago
I am not so sure this is a helpful place for information. I was hopeful to receive some advice on tilting shower chairs, but this doesn’t seem to be a helpful place for recommendations.
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Gail A started the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 10 months, 1 week ago
My husband’s Shower Buddy is no longer adequate for him, so I am trying to research tilting shower chairs. I was hoping to get some advice or recommendations as they are quite expensive and likely cannot be returned if they don’t work out.
Thank you so much!
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Gail A replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 11 months ago
For the past three years since my husband’s diagnosis, I have eagerly awaited Rick’s column. As many have said, he had such a gift for words. I noticed there had been a few weeks when there were no columns and fervently hoped that there was some minor medical issue, but that his columns would return. I was so saddened to learn that he has left…[Read more]
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Gail A replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 11 months, 3 weeks ago
I just wondered if you are able to travel to another country in Europe? From what I can see, the UK has many resources, but traveling there and getting to see a doctor might be very hard. Sadly, it doesn’t seem like there are a lot of resources available to many folks in Europe or other parts of the world. I am truly sad about that. As my hu…[Read more]
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Gail A replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 1 year ago
Hello Iancu, When I wrote last, with some suggestions. I did not know you were from Romania. I did a little looking and found something that might help you. There’s a website http://www.alsworldwide.org and it has a lot of helpful information and. Facebook page but also a “resource finder”. When I clicked that, I was able to enter Romania, and this is wh…[Read more]
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Gail A replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 1 year ago
Dear Iancu, I am so sorry for your situation. I will offer a few suggestions that might help. First I would get a referral from your primary care physician to the nearest ALS clinic. We’ve been going since every three months since my husband was diagnosed in 2019. There your husband would see a number of specialists to help treat his symptoms. Fo…[Read more]
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Gail A started the topic ALS and Incontinence in the forum Living With ALS 1 year, 10 months ago
I am new to this forum, so forgive me if this topic has been discussed already.
My husband has recently been experiencing urinary incontinence and after ruling out a UTI, I suspect it has a connection to ALS. It’s been a real game changer in terms of daily care, especially caring for someone who is partially paralyzed.
I would appreciate any t…[Read more]
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Gail A became a registered member 1 year, 10 months ago
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Hello Gail,
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]
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Hello Gail, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. 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 history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Hi Gail, I just answered you in the topic you posted about shower chairs.