Gail A

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]

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

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]

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.

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]

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]

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]

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]

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]

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]