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Nov 12, 2015
San Diego
Yesterday we had our first ALS Clinic visit. I think my PALS was overwhelmed by all of the people. He says he is very tired.

He was diagnosed 3 1/2 years ago but was pretty much on a plateau until about 2 months ago when he seems to have fallen off a cliff. For the first 3 years his left hand and arm were affected and not much else. Now it seems like ALS has spread its tentacles throughout his body. He is having trouble sleeping because his breathing capacity decreases when he is lying down. Despite my trying to prop him up with a wedge pillow and more, he doesn't like them and ends up in a chair. His speech is starting to sound muddy. His legs are weakening and his right hand shows signs of going the same way as his left. He is tired all the time. He also resists my attempts to feed him because he has acid reflux as well.

I was somewhat emotional at clinic; I had hopes that his progression would continue along a slow path. The Dr. thinks it is still slow but he will end up quite disabled. The Dr. also brought up the possibility that FTD is raising its ugly head. I am already emotionally exhausted, not sure how I will do over a 10-year stint at this. We were going to travel next month but I have canceled it because he says he cannot do it.

We will be starting Bipap when it is ordered; I'm hoping it will help him to feel less exhausted. The ALS Association rep is going to come out and look at my impossible house and tell me if anything can be done to modify it. Meanwhile I'm still running my business (part time) and trying to deal with all of his issues that he can't deal with. I'm trying to hold off scheduling appointments for him until next week as he just needs to rest and process it all.

No other way to put it. ALS just sucks.
ALS does suck for sure!!!

So sorry, the plateau has ended and that FTD may be rearing it's ugly head. As if ALS wasn't bad enough.

Hopefully the bipap will help with the fatigue.

Very sorry to hear about the speed up in progression.

Re breathing while lying down, is there a plan for a hospital bed? It can really help, with or without BiPAP, and will also be useful for transfers.

As far as the reflux, if feeding pace is an issue and the food he's eating is as benign as you can make it, you might consider food the consistency of shakes (like soups, puddings, soufflés, etc.) that he could drink with a large bore straw for more pacing. Don't know if there's still an opportunity finger food for the right hand, as well.

If he really has FTD, I doubt you will still be at this several years from now, V. But if he is showing signs, this would be a good time to ensure his advance directive, powers of attorney, etc. are complete.

Oh V - SUCKS and SUCKS and SUCKS :cry:

A hospital bed as suggested will help as he can be comfortably semi upright, but of course bipap is the big answer to help.

Changes could be CO2 retention, getting that sorted will help you to figure if that is the case or FT changes are happening.

Let it out here, let's work through it together.
I'm so sorry V. So very, very sorry.

Laurie is right--if FTD is starting, you won't have 10 years (and with a bad case of FTD, neither of you would want that much time). I second Laurie's recommendation that you make sure all of his wishes are recorded and that you have the necessary POAs. Matt had told me to disconnect him if he became unable to communicate, but we never considered the possibility that his brain would go and that he would be able to talk, but without any sense of reality. His very last coherent communication with me was to make sure I did not leave him alive if his mind was gone.

That sounded harsh, but it's important. Once you have that in place then you can focus on comfort and dealing with the present.

Matt took meds for reflux once he started having stomach problems. Sometimes we focus so much on the nuerological and pulmonary aspects of ALS that we don't treat "normal" medical issues that complicate things.

The hospital bed is a great idea.

Big hugs to you both,

Clinic is always a long day and can be overwhelming - especially when there are lots of changes. So much information to process. DH and I always need time to decompress afterward.

DH has some reflux, but the bigger problem for him is feeling uncomfortably full after just a few bites. He is on 2 different meds, but also feels that medical marajuana helps.

My DH's progression has also been fairly slow in some areas. He has lost his arms/hands and legs, but breathing, swallowing and talking are fairly stable. So I consider us at a plateau. I'm at times just emotionally exhausted already, yet I know that our cliff is still somewhere on the horizon.

I hope the ALS rep can help you figure out your house. We had a wonderful lady from our county office on aging and disability come out and look over our place before we renovated. She has an adult son who is also in a PWC who lives with her and had so much practical information.

Sending you many hugs.
Thank you all for the great suggestions and especially for the support. I did ask the clinic about a hospital bed, but they didn't think it was necessary at this point. I still think it might help him a lot. I hate to see him in his chair all night. I also hope that the Bipap will help him.

This morning I made him scrambled eggs with ham. He was eating and then told me he was nauseous and almost brought it back up. I told him not to eat so quickly! Put the fork down in between bites. There is no hurry, we aren't going anywhere today. So he slowed down and finished his plate. He was doing some CBD before but stopped it. It might help with the anxiety and appetite too.

I frankly don't think it is FTD at this point. The doctor does not know him. He tends to wallow and give up; I told the doctor that. The doctor just saw him when he was a bit unresponsive and very down. He is on an antidepressant now after I begged him to start taking it again and the doctor wants me to increase his dose starting in a week.

It was hard to cancel our trip. We went to Greece last year and he had such a wonderful time. He was very gregarious and talked with everyone, loved the food, loved the whole experience. So I planned a return trip. As of January he was still doing well enough to go. He always promised me he would travel with me one day. I am very very thankful we went last year. We have some wonderful memories. It's just hard on both of us to have to give everything up. I am worried about the house. He does have a rental nearby that I think could work but it is hard to kick out the tenants, move from here, and adjust.

Anyway thank you again. I've been here on the forum for 3 1/2 years and just so appreciate the wealth of knowledge and support.

Brian fell off a cliff about a year and a half after diagnosis. Not as long as your PALS but similar situation. Honestly, I’d be doubtful it’s ten years FTD or not, but everyone is as different as their choices.

I’m so sorry this is happening.

I'm starting to understand why the doctor thought it might be FTD. He has been very withdrawn and uncommunicative. He has done this in the past before ALS when he is ill; he ruptured his Achilles tendon 15 years ago and stayed in bed for nearly a month despite doctor's orders. I am hoping it is a combination of depression which we are treating and breathing issues, which we will deal with when we get the Bipap.

I have been speaking with him about several things including eating. I told him I will take care of him but I cannot do this alone, he has to help. He has to make an effort to eat, interact, and try to find things he enjoys doing. I know it is a blow to him to have to give up the physical activity he so enjoyed.

Meanwhile I have put a shower chair in the shower with a hose unit, also bought him a walker today. I told him I want to be able to get him out and take him places...he has enjoyed going to the casino with his sister on occasion and I could take him out with me when I paint. I'm hoping he can still take part in these activities. Since we cancelled Greece I was hoping to perhaps take him to one of our nearby national parks instead, which I know he enjoys. With the walker and the wheelchair (he's not yet in a power chair) it should be possible while he is still able. At least, I hope so.

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