Overwhelmed and terrified

[IslandChelle]

Hi there, this will be long and I apologize for that but I thought I would introduce myself. I’m Chelle and my husband, Steve, age 53, was diagnosed with ALS in early November. Looking back, we‘re pretty sure symptoms started back in 2017. Why didn’t we go into a doctor sooner? Because my husband was born with cerebral palsy that basically affected his legs and balance. He used a cane for walking and a wheelchair for longer distances. And we honestly thought it was aging with CP. He has always had a fall every now and then but in 2017 it started happening more frequently. His hand a little tremor now and then. His voice lisped a bit especially when tired. Again, something that occurred with the CP. I encouraged him to get active as he worked a computer desk job and wasn’t getting much exercise. Slowly but surely, symptoms started to increase and he finally went to see his PCP in March of this year. She thought the same thing I did - lack of fitness, asthma causing some breathing/speech problems, etc. She prescribed physical therapy and speech therapy. After he was fully vaccinated against Covid, he started both PT and ST in June.

At first, it seemed to be helping. He stopped having falls, he was learning to take deep breaths before talking and he had a sparkle in his eye that I hadn’t seen for a while. But by July, it started going downhill. Fast. He asked me to drive him to his therapy appointments because he was so tired afterwards, he was scared he was going to have an accident. He had been walking into the building with a walker. Now it‘s using his wheelchair. He stopped wanting to drive anywhere. Matter of fact, he stopped wanting to go anywhere. His voice became increasingly difficult to understand, especially in the evenings when he was tired. He was losing weight even though it seemed like he was eating regularly. He choked drinking fluids and started using a straw.

We went back to his PCP in early October and she was very concerned. Sent him for an MRI to check for MS, strokes, or signs of cancer. It came back clear. So we headed to a neurologist in early November who examined him and told us he’s pretty sure he has motor neuron disease. Finally got an EMG test done a couple of weeks ago and it showed the neurologist was correct and with his symptoms, it’s ALS. We were both devastated. We had so hoped it was going to be something fightable but this isn’t.

What worries me is how quickly it has progressed. Within 6 months, he’s gone from being able to take care of himself, drive to the stores, shop, help out with the high school sports teams to a man who can no longer shower himself, brush his teeth, get dressed. Can no longer walk even a few steps with a walker. Some days he can’t even stand up. He still feeds himself but has trouble cutting up certain foods. His voice is almost completely garbled. I usually know what he’s saying as we’ve been married nearly 25 years but sometimes I haven’t a clue what he's saying. Seems like every week, there is another step down the ALS road. I’m completely overwhelmed with everything I need to do. I’m constantly on the phone trying to figure out what form to send in for disability paperwork through his work, to doctor‘s offices to get them to fill out said forms, trying to get them to move up appointments. Most of the time it’s like pulling teeth to get in to see them. He had a PFT done a couple of weeks ago, prescribed back in early November but the office forgot to send it to insurance for approval so nothing was done about it until I called and demanded it. The neuro had talked about a feeding tube, hence the PFT to see if his lungs could handle the anesthesia. Finally got the results just this week and no mention about the feeding tube. I had to ask and the nurse was like a deer caught in the headlights. Has no idea. But she’ll have the doctor call me. Nope, no call. And of course with the holidays, I’m not going to reach anyone.

We got set up with an ALS clinic in Seattle. But can’t get in there until the middle of January. At first they said March or April but I put my foot down and they managed to get him in earlier.

I honestly don’t now how much longer he has. Right now, he has no real quality of life. He sits and watches TV all day and it really doesn’t interest him. I’m sure he’s depressed. He balked at the idea of a feeding tube so he tries really hard to drink and eat normally. He chokes but not that often. He has already said he doesn’t want invasive ventilation. That he’ll be ready by that time to say goodbye. It breaks my heart to see him like this. Even with his CP, he fought hard his whole life to have a normal life - he was involved at his school, he always worked hard at his job, he loved to volunteer for the sports teams, even though he couldn’t play himself. We always enjoyed road trips around the PNW and checking out new places to eat. All of that has been taken away from him. And me.

Right now, we have in home health care coming in to teach me how to take care of him. We have spent tons of money in equipment - slide boards, shower benches, etc. Not even the more expensive stuff that I see being used out there. They’re always saying how great we’re doing. I don’t feel like I’m doing great! My days now are filled with nothing but ALS and taking care of him. And I wouldn’t mind if I felt like I could see the light at the end of the tunnel but there is no light. Just a dark tunnel. Fortunately, he sleeps well at night for now. I don’t. I wake up at 2am every morning and my brain starts turning and churning and I feel panicky. I have no idea what the future holds for us. I try to take it one day at a time but it’s difficult.

Not sure that I’m asking for anything of you all. I guess I just needed to vent to people that understand what is happening. His family who are fairly close by have been wonderful but they don’t see the daily struggles and mishaps. So they don’t really get it when I say I’m exhausted and worn out already.

If you managed to read this far, thank you for listening. ❤️

 

[affected]

Hi Chelle, I'm so sorry to welcome you here, even though every one of us here wishes we didn't have to find this place.
My husband was rapid progression too, and it's incredibly scary.
I'm sorry you are having the extra issues of problems getting the right paperwork done and appointment delays as that would be really frustrating.
Have you contacted your local ALS organisation? Many have loan closets for the big items, and others who live in the US can give you more advice on what insurance covers.

Please remember that you are still in shock, and this is a real and valid thing. That first month or two after diagnosis are pure living hell as you try to absorb what you have both been presented with.
Then, if rapid progression, it can feel like a constant series of new shocks, and that is valid too.
I felt all the things you have described.

I did find that a combination of - talking to others in the same situation, seeing a counsellor regularly, and taking an antidepressant really helped me make it through my time as a CALS. I felt like there was a constant screaming in the back of my head, or in my soul, and these things helped me to silence that screaming. I still felt angry, sad, scared, and many things, but I could get up each day and look after my husband, and advocate for how he wanted to navigate what few choices he had.

We will walk with you, none of this will be easy, but here you will find some who have done it, and many who are doing it all right now. You aren't alone in this.

 

[lgelb]

Hi, Chelle, welcome while sorry you are here.

I know a little bit about having a husband who already has powered through a lifelong condition, then being hit by ALS. In my husband's case, it was Marfan syndrome.

With the progression you describe, it sounds like it is time to get a Hoyer lift and to make sure your home/his bed is set up for one. I wouldn't spend any more money on transfer gadgets. The ALSA may have loaners.

He shouldn't need heavy-duty anesthesia to get a feeding tube. It can be done in radiology at almost any PFT if/when he wants/needs it. Adjusting his diet to eliminate seeds, kernels, skins, etc. can delay that time. But if his PFTs show he needs a BiPAP, that is not invasive, and it will really help him.

Which Seattle clinic are you going to in Jan?

I know it's hard to break out of "life is over" for someone who has worked so hard with it. Is there any way that he can still interact with the team via video, watch games, give advice? Are there pastimes and pursuits, from watching birds to reviewing his music collection, that he might enjoy? It is a different life, but it can still be a life. It can be worth thinking about milestones in front, and if he is open to it, an antidepressant and/or counseling might play a part.

No one does great all the time, and sleep is important. Try to think about why you're waking up. Maybe there is a conversation that you two just need to have.

Best,
Laurie

 

[IslandChelle]

Thank you so much for your message. I’m so glad to have found these forums. In one way it’s nice to read others’ stories and know I’m not alone. But on the other hand, I feel terribly depressed that anyone has to go through this.

 

[lisatsmith13]

Hi Chelsea, I was diagnosed with Bulbar onset ALS in June, which significantly affects my speech and some of my swallowing. I had a speech therapist work with me to do “voice banking” which allowed me to save phrases on computer to use when I am no longer understandable. They do have computers that will talk for you; some that can be used by eye movement.

I have been using thickener from the drug store to use in liquids to decrease choking and it is very helpful.

 

[IslandChelle]

Just wanted to thank you all for your replies. It is much appreciated!

We will be going to the Virginia Mason ALS clinic. I’m hoping they will be more proactive on what to do for him. And give us some ideas of how to make Steve’s life more enjoyable.

 

[Mary2]

Hi Chelle, Sorry to welcome you here. Your PALS sounds like a wonderful person and I am sorry that you both have to go through this. You will find the strength and grace to be a caretaker. It isn't easy. and it is tiring ,but there are also moments when PALS and I sit and enjoy each other without thinking about ALS. Those moments are precious,and I hope you and your husband have some of those moments.