[Gail A]

Thank you all so much for sharing your thoughts and experiences. I hope that it is ok that I am a caregiver and not a pALS. But, to be honest, we suffer in concert with the person we love. And, sometimes, the cALS and pALS are a distinction without a difference when it comes to the myriad of ways that ALS causes so much suffering, pain, and so many losses.

I appreciated reading your posts as lately I have been especially sad, and feeling hopeless. My husband is entering his 6th year with bulbar onset. Since a year ago he is quadriplegic and he is total care. I braced myself for the physical demands, and with some nursing skills, it is manageable. What I didn’t see coming was the onslaught of fear and sadness that can overcome you and lead to emotional fragility. I’m hopeful that soon he will have a head mouse and can, once  again,  use his speech generating device. I have so missed his wit, humor, and comforting words. Something more than a word or two spelled  out on a keyboard will be be so welcome. In the meantime, I will take to heart your thoughts and ideas — listen to a song or two. I need to play a few of our favorites, mostly Johnny Mathis. Once upon a time we had a dance or two every night to Mathis.

Thank you for letting me say a few words.

[Gail A]

Just a few things to add. My husband has had his PEG tube since 2019. After checking, I have been administering his crushed meds together. I’m a huge fan of the Silent Knight pill crusher that I bought on Amazon. For those still able to do their own feeds, I recommend the Buckwheat feeding tube holder (www.feeding tube holder.com). Also a video on YouTube. We purchased the Buckwheat Armie that has an adjustable arm and attached to the kitchen table with a C-clamp. For a very long while this enabled him to do his own feeds. I have since donated to our ALS clinic. By the way, it was designed by a man whose father (nicknamed Buckwheat) had ALS and struggled to feed himself. One more thing to share. The Oley Foundation is a home nutrition therapy advocacy group with loads of information, resources, and help for people who require tube or IV feedings. You can sign up for newsletters as well as checking out their website. Hope these suggestions will be helpful.

Gail

[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 guy whose father had ALS and needed multiple machines to do different functions. We were lucky to get this early in his disease when it became available I believe in 2019. We have used all of the functions except Oxygen which isn’t typically used for ALS patients. It’s nice having everything you need all in one box. Hope this might help someone.

Gail Albert

[Gail A]

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

[Gail A]

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 and a mixture of applesauce and flaxseed meal (ground flaxseed). I have to water it down to administer through the tube, I’ve had good success with this and I also make sure he gets probiotics daily. Sadly, he also suffers from gastroparesis and bile reflux.

In the course of doing some research, I found a couple of recent studies that reveal that the vagus nerve in ALS patients can atrophy and be damaged. (I just shared these studies with our neurologist at the clinic we attend.) Interestingly, the vagus nerve affects many organ systems, including the GI tract. More studies are needed, but perhaps there is a correlation.

These studies are published in the Journal of Neuroimaging available in the NIH Library. “Ultrasound Detection of Vagus Nerve Atrophy in Bulbar ALS” and “Autonomic Dysfunction in ALS: Neurophysiological and Neuroserology Study”. I know these sound complicated, but the conclusions are easy to understand. Another, older, but interesting abstract is “Gastrointestinal Dysfunction in ALS”. Best to Google this title.

Just thought I’d share for those who who might be interested. Hope the applesauce/flaxseed mixture will be helpful.

Gail

[Gail A]

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 clinic who could be very helpful for you.

[Gail A]

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 us, even sadder that it was on Father’s Day. My thoughts and prayers are with his family.  I find comfort in knowing that his suffering has come to an end and that he is whole and healthy once more.

Gail

[Gail A]

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 husband’s caregiver, I know how difficult and stressful it is. And I cannot imagine how you do this job with young children. I mentioned to my husband some time ago that there must be people in Ukraine with ALS and how do they cope with the invasion going on? I surely don’t know how we could do it. I feel fortunate (but sad too) that we are able to easily get help with this awful disease. I really wish I had some way to help.

[Gail A]

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 what came up.

Dr. C. Vasilescu     Neuromuscular Diseases Association of Romania.         Institute of Neurology.                                                                                                    C.P. 44-12.                                                                                                                 Bucharest, Romania RO-75128.                                                                                  Business Phone.   40-1-3306273.         FAX 40-1-3213964

I truly hope you are able to find some help here. I wish I could do more.

 

 

[Gail A]

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. For example, my husband was prescribed Glycopyrrolate for excess saliva and Tizanidine for spasms and stiffness. They may also be able to arrange for a physical therapist to come to your home to help your husband and offer suggestions to you. Your local ALS chapter is another resource to check on. And your husband might be eligible for disability with social security to help with expenses. I hope this is helpful as you will need a lot of support on this journey. Best wishes to you and your little ones.

[Gail A]

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.

[Gail A]

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 start with since they seem to be very expensive and non-returnable if the chair doesn’t work out. I don’t know of a place where you could see them in person which would help. Of course Medicare doesn’t cover even a part of the cost. Jim has a Raz which looks great, but comes with a big price tag. Again, thanks for your input.