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shaunas mom

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I am new to this forum. I have seen a lot of useful information shared by everyone that I appreciate greatly. My daughter was diagnosed with MS in March of 2011 and then ALS in October of 2011. they say she has both diseases.

She is a very strong person and fights this disease everyday, partly due to the fact she has a 13 year old and an 11 year year old. She fights everything about it. At first I think it was denial and now she still fights every step of the way by not wanting to take medications or use equipment that is necessary to her care til it becomes absolutely the last resort. She won't see the respiratory therapist to assess her breathing (maybe she doesn't want to know), or visit the ALS specialist for regular visits.

She finally got a PEG tube last summer after being dehydrated a lot and feeling bad all the time. Is anyone else experiencing anything like that from people you are caring for?
 

zoohouse

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I think that we have all experienced this to a degree. I believe it is because they are slowly losing control of their bodies, and their will is the only thing they can control. Interestingly we were at an ALS meeting with a group of around 15 PALS with a family member, and it wasn't until we mentioned that each fall my husband took decreased his abilities exponentially that one man said that he was finally going to give in and use a walker. He hadn't realized that head trauma increases the deterioration, and mumbling went around the table, with several agreeing that they had been being stubborn. My husband is a quadriplegic now in spite of only being diagnosed July/12, and his symptoms only starting March/12. He had 3 separate hits on the heads, with increase of symptomology. He was the only one there in a PWC, so I think that made an impact, pardon the pun.
I am so sorry that she has drawn 2 short straws on this one, and sorry that you have to watch a daughter go through this. It is horrible and heartbreaking seeing my husband deteriorate, but I know that it would be worse if it was one of my kids. You and your daughter will be in my prayers, and all you can do is be there for her, gently suggesting over and over different aids that can help her. Would she consider joining this site and chatting with other PALS? They are great at giving each other insight
 

MaxEidswick

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>Would she consider joining this site and chatting with other PALS? They are great at giving each other insight

I think Paulette is making a great suggestion here. Shauna has some unique experiences and she may find that sharing her experiences with other PALS here helpful.

Also you may want to check with your local MDA to see if they have a regular support group meeting. I discovered that meeting with other ALS patients at our quarterly ALS clinic was beneficial simply in being and talking with other people at varying stages of progression.

FWIW,

Max
 

affected

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Hi and welcome.

My husband has been the same - his way of fighting was to refuse to let it 'get him'. This actually meant he would not take good advice and he also had serious falls, and the exponential deterioration was so distressing for me to watch, and for him to endure. He still doesn't really connect the 2 however as he has some ftd involvement.

He only does not walk not because he CANNOT.

But he insists on us putting great physical effort into standing transfers when possible, and even though he has this amazing pwc that HE REQUESTED, he refuses to use it. Instead he sits in chairs that do not support him well, until he can't bear the discomfort, then asks to be moved to another chair.

I had to let go at a certain point and decide that arguing was futile, and that I don't want to remember our last months together as a constant series of arguments.

So he does it how he wants, I support that, and he deteriorates rapidly. I cannot say how much impact his choices make on his deterioration because all PALS are different, and he would have been rapid anyway. I can say that the injuries never fully heal and cause daily suffering on top of ALS.

My PALS will see health professionals, but what he says with them (through me as he can't speak) and what he says or does once we get home are 2 different things. If I try to bring this up in front of a professional I have sheer hell to pay.
 

Santa joe

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I agree with everything Tillie just said. I had to make a decision the other night to let go on pleading,begging,crying for him to do things. I'm tired of the constant battles and like Tillie, I don't want that for us. As CALS we want to make things better for our loved ones but the bottom line is - it's their decision as to what care they want. Please encourage her to join this forum. There are so many wonderful people who will be here for the both of you.

Debbie
 

shaunas mom

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Thanks for all the thoughts, who would ever think you would watch your child go thru this terrible disease. She is only 36 yrs. old.
 

SMP51

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I am so very saddened that your daughter has been diagnosed. sometimes things just suck
 

MaxEidswick

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>sometimes things just suck

ditto that
 
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