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Bestfriends14

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Hello,

My husband has just ended his clinical trial (he dropped out March 28th) for Pimozide. Apparently, he's not progressed in his right leg or arm since last September but has only slightly in his left leg, which is his drop foot leg. However, I am finding it harder and harder to believe this, as my husband has started tripping everyday on his drop foot leg.

We had gone on a three week vacation to Europe at the end of March and just got back on Friday, and our very first night in Paris, he tripped over absolutely nothing and fell on his face...hard. Since then, he has tripped or stumbled everyday and it looks like his boot is now too heavy for his foot. He wears an AFO but it seems to be doing no good. Also, he had to be wheeled around in a wheelchair in each airport and walking more than a few minutes is too tiring. We have now ordered a scooter.

Suffice it to say, I hung out by myself in Europe as he did not want to leave the airbnb. All he wanted to do was lie in bed and look at his phone. He has been significantly depressed from the Pimozide and we are working on getting his Dopamine levels back up through good nutrition and SAMe supplements.

How can this have happened? Do you think the PImozide contributed to this or is this a natural progression of the disease? His respiratory exam was normal mid-March and his strength test had pretty much remained the same so why would he be so exhausted? He says he's winded, but again, his respiratory test showed him at 94%. Does this sound like a progression? Did you or do you, PALS, get this sort of deep exhaustion and need to move to a scooter?

I would like to be more understanding of how he is feeling because I have been trying to make him walk around more. I've been pushing him to walk at least 40 minutes every other day. The next day, however, he's wiped out. Any advice on how to be a better CALS would be much appreciated.

Thanks so much and apologies for the novel.
 

Nikki J

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40 minutes at a time? Suspect too much if so. Remember if it takes more than an hour to recover fully it was too much

Sometimes a PALS can reach a tipping point where it seems as if there is rapid progression but it is more the loss of a couple of key muscles

Sometimes there is rapid progression of course.

I find if I overexert too many days in a row or close to it it will take multiple days to recover.

Re tripping. I am starting to drag my weaker leg and have tripped when I don’t concentrate on it. I too have an afo

Hard to sort out I know when depression is a factor
 

GregK

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affected

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Fatigue and ALS go hand in hand. Please don't push him, it can hasten progression and I don't want you to feel any guilt, but any PALS that says I need a break or I can't go any further should stop what they are doing.

If he is wiped out the the next day, it was too much. Of course we can't build muscles back up, so pushing a PALS only wears them out.

With the tripping, I suspect it is a tipping point thing. Imagine that you need x number of leg and ankle muscles working to walk without tripping. You lose half them and so you show some foot dropping, but you can cope and an AFO helps. You lose the last of that x and it is no longer safe to walk. Would he use a wheelie walker?
 

Bestfriends14

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Thank you everyone for your replies.

Affected, he'll have to use a wheelie walker soon as he's tripping far too much now. I feel so terrible about pushing him. I was basing his energy on our time in Japan last November, where he could walk for a couple of hours a day. I was in denial about progression, which I'm super good at being in. Denial is my warm and cozy spot.

Greg,

Thanks for the link. I think he's warming up to looking at the forum. Up until now he's wanted nothing to do with it. I guess we both have denial as our warm and cozy spot.

Nikki, thanks, as always, for the sage advice.
 
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Bestfriends14

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Thanks for spotting that, Greg! Don't know why I said Shift instead of Affected. Oops!

If you're feeling schizophrenic, we have extra Pimozide. JK! Got to find humor somewhere.

Really good link and very eye opening. Thanks again.
 

KarenNWendyn

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Best Friend,

You are an awesome CALS. We’re all feeling our way in the dark, so to speak, with this journey.

I suspect depression is playing into it. Travel is exhausting, especially when there are changes in time zones involved.

As far as what else is wiping him out, given “only” foot drops and good respiratory numbers — I think it’s the nature of the ALS beast. My main manifestation thus far has been foot drops. But I also find that the disease is gradually chipping away at all my skeletal muscle groups — a little bit here; a little bit there. I suspect the same is happening with your husband.

I remember reading somewhere that one has to lose up to 70% of muscle mass in a given area before manifesting clinical weakness in that area. If you look at the musculoskeletal system as a whole, there’s probably a lot of muscle loss going on right now even though what he mainly shows is foot drops. All that muscle loss makes him feel more tired even with seemingly mild activities.

Definitely get a handle on the depression, but I think any exhaustion remaining is consistent with the ALS process. You might also want to consider having PT reassess him with the AFOs to update his mobility needs.
 

Bestfriends14

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Thanks so much, Karen. That makes sense if you look at the body as a whole. My husband just sent an email off to his neuro for a post clinical trial assessment so everything will be assessed again.

Give the pup(s) a pet from us here in Calgary!
 

swalker

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I can relate to denial as a place of refuge:). I think from time to time, it is healthy to detour into that place of refuge; but, for everyday living, we really need to acknowledge the denial and find a way to move forward.

One of my ways to move forward was to accept that my body is failing me in ways I don't understand and can't really predict. Along with this comes a tremendous feeling of fatigue and greatly reduced stamina.

Recognizing these issues, I decided to follow a path of conserving my energy for things I enjoy. That means I use every assistive device available to me so that I can conserve energy. By far, the best decision I made was to commit to using a power wheelchair relatively early. There are now no practical limits to how far I can go on wheelchair accessible terrain.

I can still walk around the house without the wheelchair. My range is down to about 50 feet. But, whenever I want to go shopping, go to the neighbors, or go on a hike, I take the wheelchair. I can also use the wheelchair in the house whenever I need to. It has made a tremendous difference.

I try to stay active and keep my joints mobile. This has become increasingly difficult, resulting in extensive physical therapy to work on issues with my shoulder mobility.

As for stamina, I simply know when it is time to take a nap. I nap just about every day and sleep for very long periods at night. Doing that has really helped me get the most out of my days.

As a final thought, when I stopped trying to push myself physically, I believe my progression slowed down. Every PALS is unique, and just because something seems to make a difference for me does not mean it will make a difference for others. But, it is something you might want to investigate a bit.

Steve
 

Bestfriends14

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Thank you, Steve. It really helps to get a personal perspective from someone who lives it. Always looking at it from my perspective does no good for my husband.
 

KimT

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Just the thought of going to Europe makes me want to take a nap. Things I used to do without a thought, are impossible. I used to run 10 miles a day. Now I walk 10 minutes a day on the treadmill and that's it. I could swim all day in the pool. Now I float around for range of motion for about 20-30 minutes. I get up and down frequently but my legs get tired if I try to walk long distances so I don't.

I would like to suggest an evaluation by a PT and a doctor for possible depression. Depression makes it much worse. I was diagnosed with depression nearly 20 years ago and, honestly, it made me more tired than ALS.

I'm really glad you asked PALS for their take on things. Observing it and going through it are both hard but there are different perspectives.
 

Inventor

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Losing muscles was hard, because every day you had to adjust to a new disability. But once I had lost all except for the eyes, things eased up. Now I have been a bed patient for almost four years and life is good. I am glad I did not worry about the future after the diagnosis, would have been waste of time and energy.
 

chally

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You say he's on his phone, well then he can get on this post.

He is the one that needs to read our words of experience cause he is the one it's physically happening to.

You can learn all ya can about this but if he don't come to grips with it then it will be deffinately a harder row to hoe.
Sorry
 

Bestfriends14

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Hey Chally,

I'd like him to be on this forum, but he's not ready just yet. I agree that he needs to come to terms with what's happening. It's been a year next month that we heard those three letters and while he goes through the motions of having this diagnosis, he doesn't really want to absorb it. He doesn't want to talk extensively about it and doesn't want to hear about people's progression.

I also don't want to push him either as I think that's cruel. So, as it stands now, I do all the research, get the equipment, book edaravone treatments overseas and ensure he's as healthy as he can be. It sounds very mothering, but I'm worried he won't do what he needs to do to ensure his safety. Not because he's lackadaisical, but because he would like to remain ignorant for as long as he can, until he's forced to no longer be so.

Thank you again, everyone, for sharing your personal insights.
 

Inventor

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I am glad nobody had the idea that I should for some reason extensively talk about the consequences of losing my muscles, as if I was not capable of figuring that out myself (and I am glad to live in a country where choosing to live on vent is no financial burden for the family).
 
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