Hi New here family memeber with ALS Lots of questions

[terrics]

Hi,

My brother in law has ALS which I think is progressing rapidly. I'm not sure of the technical words, but I'll try to explain. He refuses to use BiPap although all his numbers are not good (SATS at night go down to 84 I think) Some other test dropped 20 points in 1 month. (Vital capacity?)

I was caring for him for over a week and his breathing has gotten worse. He is grunting. He still trys to walk, but can't go further than about 10 feet. He refuses to use his power wheel chair. I know he is in denial, but how can he learn that his life would be so much better with some help. He takes many supplements. He always has.

Maybe someone here has taken supplements they find helpful.

He still trys to do resistance exercises...He was an athelete.

I take cerefolin for something else so I got a crazy idea that it might help ALS patients. Has anyone tried it?

My sister is a great person. All of us are upset about his not using:-? BiPap. Will it help alot?

I'd be grateful for any info that would help him and us. I am going to let him know about this site. Maybe it will help him. Right now he is so alone in his illness. We (family and friends) try. :-? Thanks

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[Miss]

I am so sorry you and your family are going through this. It looks like your brother-in-law was just diagnosed in May. My husband was diagnosed in April. He is just now coming around to the reality of the diagnosis. Maybe with a little time, your brother-in-law will, too.

In answer to your question, if the doctors say it is time for the BiPap, it is. If they sya it is time to get a PEG, it is. I know these things are hard to accept - they were for my husband. He, too, does a supplement regime. I don't know if it really helps, but it helps him emotionally to feel like he is doing something.

You will find a wonderful group here that will provide answers or resources for all of you questions. I would be lost without them.

 

[irismarie]

he is being his own worst enemy and no-one can help him unless he calms down, acceptsz help and works within what he can do with ease. Which is clearly not walking. Get him in that chair. He is killing himself faster than necessary

 

[Katie C]

Quick question.. does it seem like "normal" denial or like something else is going on? Those of us whose PALS have als-related dementia can tell you that the denial that comes with that is absolute.. what I would call "normal" denial has some kind of background realization that there really IS something wrong, they just choose to not deal with it. Glen, on the other hand, simply does not grasp his limitations. He gets quite angry when we say no, you aren't going for a walk. He can be choking and will try to put food in his mouth at the same time. IF it seems to be more than "just" denial I would have your sis talk to their neurologist as it's going to make a big change in how you approach care.

 

[terrics]

Thank you all. I will probably have more questions.

I hope he will come to this site so he will know there are people he can 'talk' with who will really understand.

Danny was first diagnosed a year ago April (2009).

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[terrics]

Hi Katie,

Thanks for asking.

Danny has normal denial. He is very smart and knows alot of anatomy. He was a teacher and a football coach. He has always been stubborn though; and although he understands an unbelievable amount of anatomy, he never liked studying physiology. If he did (and I'm sure he doesn't want to) he would understand ALS alot better.

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