Other symptoms with ALS

[SLAUGHTER1555]

Hi I've read lots of information on the basic things that come along with this disease but it didn't mention things like my husband can't handle and fumes at all it takes his breath away like he has asthma. Or like he was showering and the water ran cold a lil it was luke warm but it's like the water took his breath too. Washing his hair as the water ran down his face it was as if he was gasping for air and it was not hard water or alot of water like a rain shower. Just trying to understand why this is.

Our last als clinic he had a PFT done and she didn't give us all the information but she said his lungs were like 43 percent
So his Neurologist called and he said he was surprised his numbers were that low. Now my husband back hurts a lot, I think it's because of the percentage of his lungs capacity. On top of that he has trouble using his bipap smh they have changed the settings so many years times and he still not using it. To me he's causing the disease to progress faster than it will. So I just want to know can I hear from some ppl who have had experience in this. His diagnosis has been since May 13th 2015. Thanks in advance

 

[affected]

slaughter these questions highlight one of the big powers of this forum - we know and can share so many things you won't be told elsewhere.

Many PALS develop many problems with all kinds of smells and fumes.

Water temperatures will indeed often cause that gasping, and water running on the face is really dangerous as the gasp it can produce can cause some water to enter the mouth and be aspirated as they gasp.

Very often there are also many skin changes - dry, itching skin in particular and they develop fungal infections on the skin very often.
Another is the inability to control their body temperature. This can mean they are cold or at least cool on hot days, need blankets to sleep even in warm weather, and yet can overheat quickly as well.

The back pain could well be weakening torso muscles so be really careful about positioning him so that he always has lots of support for his back.

I know it must seem like so much rapid progression in such a short time and my heart goes out to you. My Chris was rapid progression so I know the shock it causes and the feeling of running just to keep up let alone trying to stay ahead at all.

 

[Barbie]

every thing that Tillie just said I was going to write also. she is right on. Slaughter, same with all things for my husband. he decided he had asthma and had developed food allergies that cause him to cough and choke. (it is like a sensitivity trigger has been set off) I surely believe it is related to the declining lung function

as far as the bipap, not using it will not speed anything up as far as progression, but using it could make him more comfortable and slow his decline. I would have the RT come out and work with him and his setting so he can get use to it. many pals start off using it while they watch tv for a few hours every day. that helps them adjust to the feel of it. if you go straight in to bed time with it, they become more anxious. I would not let my husband wear his at night for about a week, only let him use it during TV time, and then naps. after he acclimated to it, night time was easy.

 

[SLAUGHTER1555]

Thank you all so much for the response it's nice to know it's just not me making thesense things up. We just got a fan to help with the hot/cold times. And I will be mindful how I wash his hair from now on. Still barely using the bipap specially at night when he really need it smh guess I'm going to have the RT come out. Again thanks for the information it helpsychological so much God bless!

 

[gooseberry]

Beware of infections..in the mouth, between the toes and fingers, in the groin and buttocks, armpits. They are quite common. Dry skin is a problem for us.

Funny you mentioned cold intolerance because my steve is heat intolerant...unless he is stealing the blanket at night! Our house is set on 68 for air conditioning because the heat makes it difficult to breath. Ask for a battery for your bipap...better yet get a pulmo who treats als and restrictive lung disease. They will order a trilogy or similar machine. You can get battery backup and go out for the day

 

[SLAUGHTER1555]

he hates the bipap smh every time he puts it on he starts to gag i dont know why? but when he gets in a bad way he will get on it im just afraid the insurance will not continue to pay for it because he has to use it at least 4hrs a day. So we will see. Thanks for the information.

 

[SLAUGHTER1555]

Hello so I have a question? My husband was telling me his legs are getting weaker and its because he needs to go work out. Ok my question is this does him getting on the exercise bike help his legs not be weak? He only gets on it for like 3mins a day and in my opinion i dont think him not using the bike is making his legs weaker I think its just the disease itself. But i dont tell him that i just say well we can go get on the bike or we can do things in the house. Today just trying to encourage him and be on his side i said you can get up and walk over there stretch your legs so he got up on his rollator and was able to go over to the other side and then he sat down. His legs are so weak but he seems to think its because he doesnt get on the exercise bike. Does the bike make a difference? I was going to call and ask the nurse or someone but i figured someone on here will be able to help me. This is so new i dont know whats normal with it and whats not. I cant tell him its because of the ALS he is so weak and that this is what it does smh. I think he really knows but we are believing God for a miracle!

 

[lgelb]

No, the bike will not make a difference. ALS kills the nerves that make muscles work. So exercise can't make the muscles stronger. The idea is not to try to do more than comfortable, but to keep moving as anyone would, until you can't. If his legs are weak, it is time for a rollator and maybe a manual wheelchair. He can use the rollator until he needs the wheelchair. And starting the process for ordering a power wheelchair with your clinic, a process that takes months.

I would be honest with your husband about what you know about ALS and how it has/will affect him. This is a situation where you both need to be on the same page. He will never really come to terms with it but he will be able to deal with it sooner as he learns more about the reality. As will you. So I would make sure you have all his test results like the pulmonary tests from clinic, and keep a file of these so you can track things.

He may need to learn about ALS in bite sized pieces, at his own pace, but he does need to know the basics to be able to plan (with you) the rest of his life. It's not something to force-feed, just a process. You want him to keep reaching out to you and he is more likely to if you are concise, accurate and sincere, and acknowledge that you are still learning and continuing to.

Best,
Laurie

 

[Michellesews]

Hello there. My husband thought the same thing. As we were sitting in the neurologist's office he told me he had just been lazy and needs to get back to the gym and work out. The neurologist explained to him that once those nerves die the strength cannot recover. It's very difficult for a man who used to run marathons to be using a walker and be so weak at the age of 64. My husband fell in the bathroom yesterday yet again. We have grab bars and shower chair and I just don't know what else to do to prevent this. I have finally convinced him not to take a shower when I'm not there..,but I washers and it still happened. So many times I just wish it were me instead of him.

 

[cheerleader]

Such a familiar story! Part of it is a " guy thing". No one could convince my hubby exercise wouldn't keep him strong. He held onto his very expensive gym membership long after he stopped using it - just in case! So ironic that healthy, active people are the ones who get ALS!

 

[Nikki J]

I get that Donna and I am a girl. I only put my membership on hold this summer. And I cried. I need to go in and cancel it before it restarts automatically. It is so hard to let that go. A friend of mine mentioned yesterday she had just come from Body Pump a class I loved. It made me sad again

 

[Nuts]

Michelle, I so understand wishing it was me instead of him. My husband would take better care of me than I do of him, and I'm not being humble. I'm a smart, capable woman, but I married superman. This is just so wrong...

Slaughter, have your RT try different masks on your husband as well as different settings on the bipap. Perhaps nasal pillows would be a way to start out. Our RT is wonderful, and if I call her she talks me through changing settings (although she will come out any time I ask). I have two masks and nasal pillows, and we switch them around to suit his comfort. We have a trilogy with has two sets of settings, so I can set it higher or lower depending on whether he's using the mask or pillows.

My husband had started going without the mask on ocassion, so I picked up a pulse oximeter. I just put it on his finger one morning after he slept without it, and his blood oxygen level was 87. I reminded him that he was put on oxigen in the hospital when it hit 85 (our RT has now told him that 88 is the magic number). That's all I had to do. She told him that headaches, fatigue, general ill feeling are all symptoms of having too much CO2 and not enough O2, and I don't believe I'll find him sleeping flat without it again. It does me no good to nag, I just have to give him the facts. BTW, I learned about the pulse oximeter on this forum--no one else suggested it. It cost me about $35 at the pharmacy. I probably could have gotten insurance or the VA to pay for it, but I didn't want to wait. I won't be withou it again.

 

[cheerleader]

Nikki, I get that about not wanting to cancel the gym membership. Think it must feel like "giving in" to ALS, even though the logical part of one's mind knows it isn't giving in- just facing the reality of this awful disease! I am sorry that you have to lose something you loved! TG we keep you REALLY busy overseeing the forum! Hugs. Donna

 

[gooseberry]

Slaughter, your local alsa chapter has a "welcome kit" which includes 7 books about different aspects of als and videos. The same info is also available on their website. My husband was so scared when he first got diagnosed. He didn't want to be a burden, he didn't want to use his tools like bipap, etc. I said fine but my son and I were still going to live. After we left him home a couple of times he changed his tune about using the supports that are needed....a walker, a wheelchair, a trilogy, a straw, whatever it is. Now with adaptions we are able to do most things we did before.

 

[SLAUGHTER1555]

Can anyone explain to me why is it PALS have such a hard time getting comfortable? Like my husband spends all night trying to find that spot he uses like so many pillows are in the bed, i move them replace them fold them i mean you name it we try it but he can never get comfortable smh its to the point where he just cry. So were up were down in the recliner out the recliner in the bed out the bed all night long til he wears his self out. Is there a reason for this? is there anything that can help him besides muscle relaxers those make him super weaker than he already is. Has anyone one else experienced this?