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Mary Helen Barr

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Hello, everyone, I am new to this website, although I have been searching ALS websites for a few years now. My father was diagnosed with ALS about 4 years ago, noticing symptoms about 4 1/2 years ago. He and my mother (both 77) live in the same town as I do, and we go to the same church. His progression is apparently slow compared to some, but it's not a pretty disease, regardless of the rate of progression. He needs to have some in-home help, but refuses, so my poor mother is really struggling. I am, too, since I feel like I'm always over there helping. I want to help, but I work a lot, and have a husband and kids, so my home life suffers.

I'm having a little trouble figuring out this site, and just today figured out how to post . Hopefully, I'll get better at it. I've been reading some of the previous posts, and I know everyone here knows what it's like to be a PALS or CALS.
 

Al

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Hi there Mary Helen. Sorry you're here but glad you found us. We're a pretty informal group and we are all persons with ALS or caregivers or family of people who have or had ALS. We like to help others in the same boat and this is a new forum that sprang up when The ALS Society of Canada closed their site last month. So we are new but we have been around for a few years. We have some really informed people on site and some that just want to feel that they are not alone. I'm sure you'll fit in and we welcome you.
Al
 
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marlo

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Hello Mary Helen,

Sorry to hear about your situation. It is harder for some to except the fact that they need help. I too go to church, so i will pray for God to change your fathers heart to except some outside help, so as to lighten yours and your mothers load.
What kind of symtoms does your father have? I take it he has the limb kind? I have the bulbar ALS. On my bad days, i tell myself , tomorrow will be better, and God will see me thru.

Take care, and we'll pray for you.
 
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ekoozmin

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Welcome to the group Mary Helen--although sorry for the reason. My dad has ALS, too, and I know how you feel--caught between two households, devoted to each. It's been pretty intense. My father's friends are always telling me to make sure I take care of my family and myself, too! I'm sure you get the same advice.

Does your Dad got to an ALS clinic where they have a mutidisciplinary team of specialists who spend the morning or afternoon with him? Have you considered perhaps getting one of the social workers from that team to talk with him privately and explain how refusing help is actually very tough on his family? Or maybe your minister could offer to visit. Sometimes it takes an objective, nonfamily person to get the point across. That's what it took for us to get Dad to accept full-time help after he fell and cracked his head open!

He is probably afraid of losing his dignity and having hired caregivers to handle intimate activities may be what he's most scared of. Get him to look towards the future, when he may not be able to help transfer from bed to chair, and your mother will not be strong enough.

But also, don't forget to help him see that he can make the most of the time he has left. Can he use a computer? Does he like to read, research geneology, do word puzzles, or write letters?

Take care...

Liz
 

Mary Helen Barr

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Thanks, all of you for your responses. I'll try to answer questions all in the same post. Yes, my father's disease is limb onset. As for writing letters, doing puzzles, etc, his handwriting is not legible anymore. He might like the computer, but it's not moved into the apartment yet.

We do go to the ALS clinic every 3 - 4 months. It is helpful, but I feel like if we don't ask the right questions, we might not get helpful info.--not because they aren't helpful, but because they don't know what we need, and we don't know what's available. It is a good idea to have a social workerspeak privately with him. It may or may not work, but it's worth a try.

My father does not seem to have bulbar symptoms yet, although he can't hold his head up. Does that mean it's starting? He has a "humped" back, and so did his mother, so I just assumed the head dropping was from the arthritis. Any opinions?
 

Al

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Joined
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Hi Mary Helen. For what it's worth one of the guys in our support group who is in his early seventies has no bulbar symptoms but he says he has a hard time holding his head up as well. It could be a combination of both.
Al.
 

Granny

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May 18, 2005
Messages
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Hello Mary Helen,
Welcome. Just wanted to say that I too am getting weak neck muscles, but I have bulbar ALS. I cannot lift my head straight up from a pillow. My neck is also stiff and I cannot turn if full way to the side. My ALS doctor recommended that I get a cervical collar to wear part time to help rest the neck muscles. She recommended a Headmaster collar. Has anyone else used this brand of collar?
Hope you find the answer to your questions, and may God give you and your family grace and strength in these trying times.
Love and hugs, Leah
 
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