My PMA just got diagnosed to ALS

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Bigshawn44

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I had been diagnosed with PMA in December of 2019 and April 3 2020 just got diagnosed with ALS. I’m reaching out for help on how to deal with sudden loss of strength and endurance. After dealing with PMA I used to have good days and bad with strength. But recently lost a lot of strength and I have rested for 3 days and it’s still gone. I’m just shocked to have lost so much in a short time. Is there anything I can do or to get some back? Now I feel like I’m carrying someone around and hanging off my upper body. Losing balance more frequently also. I have been getting set up to start radicava and riluzole at the same time. Has anyone else done both?
 

KarenNWendyn

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Sorry to hear that Shawn. You may or may not regain strength. Gains are usually short lived, and the long term trend is to keep losing strength. The best is to do stretching, range of motion exercises, and walking or swimming if you are able to. Maintaining your weight will keep you from progressing faster. If you are losing balance, it might be a good idea to start using a cane or walker so you don’t fall. Falls speed up progression. If you are plugged into a local clinic, the PT can advise you on exercises and ambulatory aids.
 

lgelb

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Radicava and riluzole is a common combination, Shawn.

In truth, PMA is often regarded as LMN-dominant ALS, ALS and related disorders can be stable for periods before progression, and progression often manifests over a short period of time in more than one dimension.

Karen is right -- fall prevention is key. Find the device that will enable you to do what you can do, but more safely.
 

wmilo

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Hi, Shawn. Sorry to learn of your dx; glad you found this group. It is not exactly what you asked, but if you've not already done so, start using some way to be seated in the shower, and have at least one grab bar installed (and I mean mounted properly, not screwed into drywall).

Regards,
Bill
 

Bigshawn44

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Thanks for the replies. Within the last 2 weeks the progess as kept going. Now I’m unstable going down steps as my legs shake. I started the riluzole 2 days ago and waiting for radicava approval from insurance. I have been severely discouraged that I have lost so much strength in such a short time. I’m trying to stay busy to feel normal as not doing anything I feel will make me decline. I’m still trying to work to provide for myself as I have no financial support to pay bills and disability has not come through. In your opinion by working and when I say working I’m standing for 8 hrs straight and constantly moving am I making myself decline faster? I have not really found information or advice as if I’m making it worse as if I am then I need to not do this. I guess I’m trying to hold onto not declining. I appreciate any and all responses.
 

Nikki J

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In my opinion yes you are likely making it worse. Certainly symptomatically. I am MUCH worse if I do too much. If you do too much all the time you won’t recover to your baseline ever. I used to live in a house with many stairs. When I moved to one level I realized battling the stairs all day had really affected my function. I didn’t get better clinically living on one level but I functioned better. I have also declined slower clinically since my move ( I am in a study that does quantitative strength testing). I can’t prove that constant overuse accelerates progression but I believe it. Falls definitely accelerate progression.

ssdi is tough because you have to stop working before the waiting period kicks in. Your diagnosis qualifies you yes but working no matter what the diagnosis is an automatic disqualifier. You may qualify for immediate ssi but that is not much to live on
 

Bigshawn44

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In my opinion yes you are likely making it worse. Certainly symptomatically. I am MUCH worse if I do too much. If you do too much all the time you won’t recover to your baseline ever. I used to live in a house with many stairs. When I moved to one level I realized battling the stairs all day had really affected my function. I didn’t get better clinically living on one level but I functioned better. I have also declined slower clinically since my move ( I am in a study that does quantitative strength testing). I can’t prove that constant overuse accelerates progression but I believe it. Falls definitely accelerate progression.

ssdi is tough because you have to stop working before the waiting period kicks in. Your diagnosis qualifies you yes but working no matter what the diagnosis is an automatic disqualifier. You may qualify for immediate ssi but that is not much to live on
Thanks for the quick response. I am not making money when I say I’m working. I’m actually helping family and trying to keep my mind busy trying to not face the reality of what I’m going through. I’ve worked since I was 12 and it’s hard to just sit and not do much. Is there any kind of funding or grants to help get better living arrangements or help to make changes?
 

Bigshawn44

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Sorry to hear that Shawn. You may or may not regain strength. Gains are usually short lived, and the long term trend is to keep losing strength. The best is to do stretching, range of motion exercises, and walking or swimming if you are able to. Maintaining your weight will keep you from progressing faster. If you are losing balance, it might be a good idea to start using a cane or walker so you don’t fall. Falls speed up progression. If you are plugged into a local clinic, the PT can advise you on exercises and ambulatory aids.
Thank you
What do u mean by maintaining weight will help with progression? Ever since I started having swallowing issues I lost all appetite and have to remember to eat. I have a slow decline in weight but I think it’s from losing muscle so much.
 

KarenNWendyn

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ALS messes up your body’s metabolism. If you can’t eat enough calories to maintain your weight, your body will break down muscles as a fuel source, and you will lose more weight. It becomes a viscous cycle. I lost weight in the beginning and I noticed fast disease progression. As soon as I started eating more, my weight stabilized and my progression slowed. Think of this as an opportunity to enjoy more ice cream without the guilt!

If swallowing is difficult, you may have to eat more blended foods like smoothies. If that gets difficult and you are still losing weight, then it’s time to consider a feeding tube. A dietitian can help you with food selection.
 

Bigshawn44

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ALS messes up your body’s metabolism. If you can’t eat enough calories to maintain your weight, your body will break down muscles as a fuel source, and you will lose more weight. It becomes a viscous cycle. I lost weight in the beginning and I noticed fast disease progression. As soon as I started eating more, my weight stabilized and my progression slowed. Think of this as an opportunity to enjoy more ice cream without the guilt!

If swallowing is difficult, you may have to eat more blended foods like smoothies. If that gets difficult and you are still losing weight, then it’s time to consider a feeding tube. A dietitian can help you with food selection.
Thanks for clarification. I’m not at point where I need feeding tube but have issues swallowing. Just have to drink more fluids while eating and have increased saliva bad after eating.
 

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Sorry about the progression you are experiencing Shawn. Back in January I see some posts in your first thread about the dangers of pushing your failing muscles, and how that can accelerate progression. It's really hard to find a balance, but if you want some leg function as long as possible then now is the time to start pacing yourself and preserving energy.

My husband was rapid progression and he also pushed himself and lost weight quickly which I am sure only made things faster for him.
 

Bigshawn44

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Sorry about the progression you are experiencing Shawn. Back in January I see some posts in your first thread about the dangers of pushing your failing muscles, and how that can accelerate progression. It's really hard to find a balance, but if you want some leg function as long as possible then now is the time to start pacing yourself and preserving energy.

My husband was rapid progression and he also pushed himself and lost weight quickly which I am sure only made things faster for him.
Thank you. I’m going to try and do better.
 

wmilo

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I’ve worked since I was 12 and it’s hard to just sit and not do much.
IMO one of the most difficult adjustments. It is very hard to let go of chores/tasks/hobbies/roles that you have done for years. Personally, it helped me somewhat to realize that my sometimes bad humor during holiday gatherings was due to frustration at not being able to "pitch in" as before. My wonderful CALS helped me to see that I can still be part of those gatherings, although maybe in a different role.

Best regards,
Bill
 

Bigshawn44

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IMO one of the most difficult adjustments. It is very hard to let go of chores/tasks/hobbies/roles that you have done for years. Personally, it helped me somewhat to realize that my sometimes bad humor during holiday gatherings was due to frustration at not being able to "pitch in" as before. My wonderful CALS helped me to see that I can still be part of those gatherings, although maybe in a different role.

Best regards,
Bill
Thanks Bill
It definitely has been a rough adjustment and I’m sure it will get better. Everything is just happening too fast at the moment to adjust.
 

BarrCarr

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Thanks for the replies. Within the last 2 weeks the progess as kept going. Now I’m unstable going down steps as my legs shake. I started the riluzole 2 days ago and waiting for radicava approval from insurance. I have been severely discouraged that I have lost so much strength in such a short time. I’m trying to stay busy to feel normal as not doing anything I feel will make me decline. I’m still trying to work to provide for myself as I have no financial support to pay bills and disability has not come through. In your opinion by working and when I say working I’m standing for 8 hrs straight and constantly moving am I making myself decline faster? I have not really found information or advice as if I’m making it worse as if I am then I need to not do this. I guess I’m trying to hold onto not declining. I appreciate any and all responses.
I believe the more I use muscles, the more I lose muscles. There is some recovery, but each time I have overexerted myself, something was lost in muscle strength.
 
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