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[hopingforcure]

I have to add this, My uncle by marriage had ALS.. His wife my aunt, may have had a form of ALS, my mom may have had a form of ALS, My uncle may have had a forum of ALS, my cousin may have ALS or something like it. Now me, and my son sat next to a boy a couple of years ago whose mom has ALS.. Scary, this thing is supposed to be rare, but way to close to my life for comfort. My family have been diagnosed with one post-polio syndrome, and another to much iron in brain, another Parkinson's dementia, mnd combination, another not known, just something progressively neurological..

 

[Claire]

Hello,
So many of you have helped me so much already through your posts that I feel as if I know you. I finally decided that it is time for me to start being an active member of this forum. My husband was diagnosed with ALS on the day before Thanksgiving this past year. His diagnosis was done relatively quickly compared to some who have posted on this site. He had trouble holding a fork when we were on vacation in July. In August he began falling and his entire right side became weak. We started with the family doctor, then to one neurologist who, after an EMG referred us to a neurophysiologist who performed further tests and made the diagnosis. My husband is now barely walking with a cane in one hand and me holding him up on the other side. (I should have the gait belt I ordered within a day or two which I suspect will make things easier.) When we go out, he travels in a transport chair. We're done being angry (well, almost) and we're trying to make each day count.

Call us brave or call us stupid, but we have plans to go on a cruise at the end of February. If any of you have suggestions that might be helpful for us, please share them. Two of my brothers and their wives will be with us, and my brothers have told me that they'll be taking over with pushing my husband and they'll take care of him when he has to go to the bathroom. (I've never been in so many men's rooms in my entire life as in the past two months, but I figure - gotta do what ya gotta do sometimes!)

My husband never got into using a computer - he was always busy physically - building things, gardening, golfing, home projects, etc. - so he won't be joining the forum. But I'll be sure to let him know what is going on.

Thanks for being here. Bless you.

 

[GlenBrittle]

Welcome to the site Claire.

As you have already found, this is a great place to get opinions given with experience.

Tell hubby , to get online. lol

Glen

 

[jpinson]

Hi,
I'm Karen and my husband was diagnosed with ALS in April 09 - he is regressing rapidly and there is help and advice I need - it is comforting to know there are others that have suggestions that might help.
Thanks so much,
Karen

 

[thelma313]

Welcome Karen, you certainly came to the right place for support and advice. I am so sorry to hear of your husband's diagnosis and his rapid progression. I hope that he hits a plateau. My heart goes out to you...
Rosella

 

[MtPockets]

It is so good to see new members finding the Forum. You are among friends here and I know you must have many questions. Please feel free to jump in on any of the threads with your requests and someone will try to help you.

 

[Zaphoon]

Welcome to all newbies. I'm just sitting back, feeling the love!

 

[KeeKer]

PZ it's not Friday!

 

[Zaphoon]

Oooopsie! I just can't help myself!

 

[KeeKer]

I knew it! OK, can't let you do it alone!Cheers!

 

[Zaphoon]

Bottom's up! My gallon jug of wine has been making me happy tonight! I feel no pain! Oh joy! Can't you just feel the love!

 

[KeeKer]

Glad you are feeling no pain! Don't think that I want to see the results tomorrow morning!

 

[Zaphoon]

Too bad you can't get a prescription for this stuff! It really works! Hey, if this stuff works this well on my tempestuous cramps, I'd bet it'd work wonders for those suffering from PMS! It seems to have a wonderful mellowing agent!:razz:

 

[melalthia]

Hello there
My name is mel . Like many of the stories, mine is a little sad. My mom is 70 and for many years she avoided going to the doctor. I think prior to this diagnosis she hadnt been to a doctor in 25 years. I was getting worried about her because she wasn't getting any younger and for years i tried to convince her that having a yearly checkup was not a bad thing. But she was convinced that they would find something horrible like Cancer, so she put it off. Then last year around May, I noticed her speech was slightly slurred. She noticed it too but tried to ignore it. Four months later she was having knee trouble (something unrelated) and she could barely walk. Her speech had gotten worse and because she was so worried about her knee.. i thought it was the perfect opportunity to get her seen by someone. We went to the hospital and they ran all sorts of tests. We had initially thought stroke.. but nothing like showed up on the MRI or the bloodwork. They gave her a cortizone shot for her knee and sent her home. The neurologist who had checked in on her had asked if she'd stop by his office so he could follow up with her slight slur and voice change... but my mom put it off.

9 months later and her voice has gotten worse; we can barely understand her. Her boss convinced her to go back to the Neurologist and he made an appointment at UCSF for a EMG test and for the specialist to check her out. It was hard convincing her to go because as she is so often fond of telling me.. she isn't like other people. She doesn't want to know what it is. But she went. The EMG findings that the nerves haven't been damaged yet.. but the specialist still believes its PBP or ALS or even something rarer. They want her to participate in a week long test to try and pinpoint which one it is, but I'm not sure if my mom is going to go through with it. She's in shock, she's angry, scared.. she wants us to leave her alone and let her deal with it alone so she won't be as she puts it.. "a burden" on anybody.

I'm at a loss really. I want her to move in.. I want her to go on that trip she's always wanted to do... i want her to go on diability so she can spend more time with my kids.. I want to learn about power chairs, feeding tubes and all the devices necessary so i can help her with this new state of affairs. I'm absolutely shattered, but i believe with all my heart that this doesn't have to be a tragedy. It can be a triumph! Life is worth living. Easy for me to say it, i guess. But I'm willing to learn why i'm wrong if she'll just let me. So here I lurk, hoping to learn what it means to be a caretaker. Emotionally, Physically, Mentally and Spiritually.

Peace, and thanks for being here.
-mel

 

[hannacat]

Hi,I am new to all of this but have been reading for a time now. My husband has been diagnosed with Bulbar ALS. He began with speech problems last June and received the 99% positive second opinion diagnosis in December at Strong Memorial in Rochester NY.

As a 4 year Colon Cancer patient in remission I am familiar with the patient side of the coin. I must say that this disease lacks the hope we found with the "actions" that my cancer diagnosis had.

I look forward to reading and learning from all of you.

Sincerely, Hanna