[Dee Hagen]

We’re thankful that we’ll be able to have kids, grandkids and other family at our home for dinner this year. My husband won’t be able to eat much and we’re going to need to figure that out. He doesn’t like to eat in front of people anymore. Regardless, how lucky we are to still be a “whole” family for one more Thanksgiving. Like Jan, my favorite holiday is Thanksgiving. Family, food, good wine and plenty of laughs. So thankful!

[Dee Hagen]

This is a timely topic in our household. Thanks for the advice. I’ll double check with medical team before starting my husband on anything. As someone else mentioned, we don’t need a person with ALS and diarrhea. A nightmare to be sure!

 

[Dee Hagen]

My husband has maintained his schedule of semi-annual dental cleanings, since his diagnosis in 2019. He plans to keep those going as long as possible. He is in a wheelchair and is able to maneuver it side-by-side with the dental chair and scoot into the dental chair. He still has use of arms and hands. He has no voice, so I go in with him to help with communication. A bit of a tight fit in the cubicle but we make it work. He brushes and flosses like crazy at home, so his checkups have been easy breezy so far. The dentist and hygienist are gentle and accommodating with him. She suctions a lot to keep it comfortable. Dental health is so important.

[Dee Hagen]

I really appreciate this conversation. Steve’s voice is down to a whisper, and that is even hard to understand with some words. Amplifying it won’t really help. He’s not interested in using a Boogie Jot board.

Jim, I looked for the Apple app you use; Speech Assistant AAC and couldn’t find it. Could it be under a different name these days? Your help would be appreciated.

[Dee Hagen]

We’re in Washington state and it sounds like, as of today, Steve will be eligible for the next group. He’s over 65, so that puts him in two high risk groups. We’re hoping by the end of February but will certainly accept it asap if the process picks up the pace. I haven’t heard anything about how at-home caregivers fit into the vaccination picture in our state. It would make sense that we would get them at the same time. I guess we’ll see.

[Dee Hagen]

Yes indeed! Steve will get it asap and I hope they’ll consider spouses/caregivers at the same time. Fingers crossed.

[Dee Hagen]

We had our ALS chapter care coordinator reach out to us within 24 hours of my husband’s diagnosis. It was so reassuring that she was there for us. She was able to answer many of our initial questions. Since then she has provided guidance for resources we’ve needed.

I would say the hardest thing about being a caregiver, so far, is that I’m the person most engaged in learning about this disease and everything that’s going on to help pALS. My husband isn’t nearly as engaged. He really doesn’t want to hear much from me about what I’m learning unless I hear about a cure. Well, of course, that hasn’t happened yet. Being the assertive spouse that I am, he sometimes hears things in spite of his objections. He’s progressing fairly slowly at this time. I am thankful for that. He’ll be participating in the Healey platform trial.

[Dee Hagen]

I signed the petition today and forwarded it on to close family and friends, asking them to do the same. It’s nice to see a bit of light for this dark diagnosis.

[Dee Hagen]

We’ll be getting our flu shots, and maybe pneumonia immunizations too. We have gotten flu shots for over 30 years and swear by them. We’ve also gotten shingles shots after seeing several members of our friends and family suffer with the shingles. I’ve gotten the Shingrix but Steve had the original shingles shot several years ago and doesn’t plan to get the Shingrix vaccine. We’re pro-vaccine. We just don’t want to risk any of those afflictions if we can avoid them.

[Dee Hagen]

The best advice (support) we received was from our local ALS assoc. chapter. They called my husband within a day of his diagnosis and offered to answer any questions we had. We didn’t know where to start but they quickly helped fill in some of the dark spots. They continue to be the first source we seek out when new questions arise because they’ve seen so many different, individual ways pALS handle their challenges. They can usually provide more than one perspective on how to approach a need.

[Dee Hagen]

My husband will be participating in the Healy platform trial. There are several reasons; less placebo, 6 month trial, open label options, 50+ locations and most importantly, his neurologist is actually encouraging about it. We’ve been talking with him about clinical trials since my husband was diagnosed in 2019. He was never encouraging about any of them, until the Healy trial came along. We’re in Washington state and the clinic manager has told us to expect to be admitted to the trial this month.  Crossing fingers.

[Dee Hagen]

Thanks for the tips on what to look for. Especially about buying an older version because of the extra space. My husband is tall and therefore his Permobil chair is taller than most. There is a Braun dealer near us as well as another, regional dealer. I think we’ll be looking to purchase a used vehicle but I guess we’ll keep our options open as we start our search.

 

[Dee Hagen]

My husband and I think the ALS clinics are valuable for gathering, confirming or otherwise discussing issues and questions that have come up since his last clinic. At first, it was much more about waiting to see what the care providers were going to do for him. We quickly realized there were no magic bullets. We do think that each specialty has something different to contribute to his well-being and comfort. Our first impression was that his neurologist was going to be the driver. We don’t feel that way now (not a bad thing) and have more in-depth discussions with him about studies and new thoughts on the disease. The clinic manager has been invaluable to us in connecting Steve to other resources. We are asking more informed questions and focusing on what he can do to maintain his current strength and movement, as long as possible. Because of COVID-19 he’s missed a couple clinics but his whole team has been responsive to questions or concerns we’ve had during this time.

[Dee Hagen]

Since my husband was diagnosed in January 2019, I’ve been trying to stay up on what’s going on with clinical trials. He was not initially interested in participating, primarily because of the placebo requirement. Last Fall I started watching the progression of the Healey Institute’s platform trial project. As it developed and was approved to move forward with the first three (and soon 2 more) therapies, we were more convinced that this was something he was interested in being part of. They still have a placebo component to it but the trials last 24 weeks, so you don’t have to wait so long to find out. I won’t lie, the fact that his ALS is progressing gave support to participation. We live in WA state and he’s going up to the U.W. to be screened for possible participation next month. I’d be interested in finding out if others are or will be participating in the platform trials.

[Dee Hagen]

I applaud you for your positive perspective. My husband has a similar story that upended our retirement dreams as well. I think your takeaway of forging your new path and educating yourself is the best way to move forward with this disease. It can be easier said than done in those first few months after diagnosis. My heart goes out to you and your family. Thanks for sharing your story.

[Dee Hagen]

I have a couple additional questions. What’s the dosage that you get from Europe and how long does the dosage (that costs 760 euros) last? Is it a monthly cost or other?

Thanks.

[Dee Hagen]

I’m a spouse and my husband was diagnosed January ’19. As things settle down from those first few months of shock, I would say the hardest thing for me is when to step forward and help and when to step back and let him work something out. He’s still quite capable on most levels, but he’s a proud person and sometimes attempts things that can actually be detrimental. Separating the caregiver vs the spouse roles take more focus. It’s a dance we’re doing and will continue to do.

[Dee Hagen]

My husband is at the point where he can’t walk distances anymore. It’s been 13 months since his diagnosis. It appears, right now, that he is an average ALS progressor.  He doesn’t really want to use a wheel chair, unless absolutely necessary. An in-between option might be a motorized scooter. I’ve read some information that scooters aren’t useful for PALS very long. I’d like to hear from others what their experience has been with scooters.

[Dee Hagen]

Thanks Marianne. I realized I was looking for the app on my MAC. When I used my phone, I was able to find it quickly. It looks much easier to use than the text to speech app Steve is using. Looks like the price has gone up a bit but still very affordable for the convenience.