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wewillbeatthis

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Hello ALS Family!

Dad was diagnosed with ALS about 2 years ago but has been dealing with it for about 6 years... In the 6 years his symptons have gone like this:

walking with a foot drop------ Now 6 years later dad can only walk with the cane in and around the house or other houses. Grocery store must use shopping cart, in stores with no carts he uses the walker, and the beach or the mall, or flea markets and stuff like that the scooter....

Balence------ never held onto anything now by 8pm dad will always ensure when walking a wall is near for comfort reasons...

Falls----- minor falls thank god once every 3 months....

Termors----- Same in his right leg at rest at night when sitting only

Voice at the start----now the same after a long day and very tired---- nasal or horse, and a tiny bit slurred, and slow...

Swallowing and eating---- start always eating now always eating.... when he is real tired, long day, bad mood, to much going on around him at the start no problem now the past year an occasional cough from just water, spicy foods, dry foods, he stops himself and then he is good... It only happens once and awhile...

Dressing, cooking, feeding himself, lifting with his arms and legs, lifting himself from a seated position, and driving---- start fine.... Now still fine perhaps a little slower at times..... Dad suffers from spasticity so sometimes it almost seems that he is moving in slow motion and other times he reaches for something so fast it is almost like he grabs it from you.... I believe this is the spasticity... He is able to get out of a low seat by pushing himself up on the arms of the seat or the table in front of him... He dresses, showers, and makes his bed, cooks, drives, and does his clothes washing without a problem....

Breathing--- Start no problem at all he does his exercises deep breaths with an open mouth great, nose great, purssed lips great... Laying flat and sitting up and standing... Now still all the same.....

Fatigue---- Start no problem at all... Now sometimes dad will be just finally sitting or standing and relaxed at home and take this sigh that is so deep. I know I catch myself doing the same sort of sigh when I am really stressed... I am concerned is this normal or something to be concerned about?

Sleeping---Start no problem..... Goes to bed around 11pm sleeps until about 3am gets up to go to the bathroom and then up for the day at like 6:30 or 7:00 am.... The last few weeks on and off he is waking up three and four times a night and says he feels either like he has so much engergy and can't sleep so he will clean out his draws or closet or read or watch TV... Or that he is tired but is restless cause he has so much on his mind, drank to much caffiene before bed, or ate to much to late and is stuffed and has to go number 2.....

Ok so there is so much information here...

My questions are...

Last time he had the oxygen test on his finger and the score was 97....

Please tell me what should I be looking for am I worried over nothing and driving him nuts cause when he told me about his sleep last night I drilled him with questions and now he is so mad at me.... I don't want to bother him but I get scared that it is breathing or something that we are overlooking and that it could hurt him.....
 

brooksea

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wwbt-

I believe a pulse oximeter reading of 97 is good, 95-100% is acceptable reading.

This disease varies from person to person. It sounds as if your dad is doing rather well for having dealt with ALS for 6 years.

I applaud you for caring so much for him. It is only natural that you would be concerned for his well being. ALS touches not only the person afflicted, but those close to them as well.

Does he live alone? And is he being seen by a specialist? If you could contact your local ALS Association chapter, they would be of great help to you by providing material regarding ALS and what to look for and expect along the way.

-cj
 

shannonme

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Sounds like it's progressed rather slowly. Unfortunately, what you're describing is the path that ALS often follows. My mother's symptoms are very similar, although she's no longer able to walk.

Take CJ's advice and contact the ALS Association. The materials they provided helped me tremendously.

You may want to talk to your father and his doctor about taking something like Ambien CR to help him sleep. Many ALS patients take something at night.

Shannon
 

jean

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Hi
It sounds as if your Dad isn't doing too badly. Sats of 97% are good and it doesn't sound as if he is complaining of any breathing difficulties. Many of us don't sleep well without medication. I find the general muscles aches and twitches disturb me and stop me from dropping off to sleep and without medication can be awake for hours.I've stopped worrying about it and find things to do to pass the time. many of my e-mails get done after midnight!
Best wishes
Jean
 

John1

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I'll go further than the other respondents and say that your father is doing extremely well for 6 years of symptoms. He has very slow progression and, if he watches out for colds and pneumonia, should have many years ahead of him.
 

CindyM

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Hi Wewillbeatthis, I'm guessing thast new or worsening symptoms leave most PALS and their families with a lot of anxiety. Know that we are with you and please don't forget to take care of yourself too. The caregiver needs rest as well! Cindy
 

wewillbeatthis

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Please Answer I Am So Scared Last Night Was Not Good

Thank you all for your responses..... You are all so wonderful and coming to this site and talking to people tha actually live through this is such a comfort...

Dad really is doing well but does have some ups and downs....

He did his streaching yesterday and lifted some weights... The problem is that all evening he was really anxious like you could tell he was walking all over and could not get comfy.... He says he is frustrated with his speech cause he wants to speak faster and just can't and I said so that is ok but he gets frustrated. The new thing is this insomnia... It is really scary for him and those of us in the house... When he lays down and does his exercises I mean his legs are being pushed into his chest and he breaths fine in that position, he seems to sit and sleep just fine. The problem has been getting to sleep.... Last night had to be the worst of the 5 times it has happened in the past few weeks... He was talking about how he hates being alone in the bed and that he is scared that he won't wake up! :-( Why is he feeling like this if he wis doing so well? Then when he did fall asleep at 3:00am I went in and said good night dad and he said night and please come check on me and make sure I am still alive and breathing... What is this why is he doing this? Please help I am so scared and don't know what to do... He says he is breathing fine he does his breathing exercises and he is breathing fine so why would he say that?
 

brooksea

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I'm sorry your dad is feeling so anxious. Perhaps he needs to inquire about getting some medication for anxiety and sleep.

My husband was on Lexapro and Ambien. There are lots to choose from.

Also, maybe if you were to set up some sort of simple alarm system for him he might feel more secure.

cj
 

wewillbeatthis

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The doc gave dad a script for prozac a low dose and said to take it for a month or so cause he was not being himself as far as personalty goes and all.... Dad does not want to take it.... I kind of wish he would so he can be less anxious...

I just don't understand what happened all of a sudden that he is now scared. Nothing has changed at all. What could this be from and why?

Do you think we should be concerned for breathing issues? I mean would he be able to do all those other things if breathing was the problem?

Jen
 

home again

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I agree with all entries above, that your dad's oxygen level sounds good. His breathing issues may be from the anxiety. My dad used to have anxiety attacks and he would get very short of breath. Lying down helped him; removing himself from anything stressful as well.

Good luck to you!
 

brooksea

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wwbt-

Since your dad has been doing so well with this disease, perhaps he is now seeing further degeneration in himself that you may not be aware of and this could be freaking him out. I know my husband kept things from me at the beginning before we new he had ALS because he new something was seriously wrong, but didn't want to frighten me. It may be hard for him to tell you what is really going on...he may not know exactly what is going on, it may just be an underlying feeling he has. My husband goes thru spells, telling me he's on the "fast track."

If your dad won't take the antidepressants, then maybe you can sit down with him and figure out a game plan to ease his mind about sleeping alone. Just a thought, does he like dogs? Maybe a companion dog trained for people with disabilities would help him feel better a t night. I would still encourage him to get a sleeping aid so he can get a good nights rest and replenish his energy and let his body get a break.

Have you contacted the ALS Association? Or can you get him to talk to the social worker at the ALS clinic? Maybe he needs to talk to someone that isn't close to him to get a perspective on what is happening to him.

Oh- does he have a hobby that he can still participate in?

Good luck!
 

tabney

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Anxiety

Jen,

Let me begin by saying I am sorry about your Dad. This is a very difficult disease on the patients as well as the family. Stay strong for yourself and your Dad.

Anxiety.....a symptom of this disease. It affects all of us differently and sounds as if your Dad has become very anxious about his health. Try to talk to your Dad about medication. It took my doctor three months to convince me to take Paxil to help control my anxiety. I fought him with all I could think of to prevent this medication. I have been taking it for a month now. I am more relaxed, always beneficial, and sleep much better. I suffer from spasms and spasticity. Anything to help relieve the anxiety of these symptoms will only benefit the patient.

Keep us updated on his progress and stay with the boards for any questions and/or support. They are a great group of people and full of information. You and your family are in my prayers.

Toni
diagnosed 4/10/07:razz:
 
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