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MRS.HOUSE

Member
Joined
Aug 9, 2010
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17
Reason
Loved one DX
Country
CA
State
Manitoba
City
Winnipeg
Hi,
My husband is displaying symptoms and it's so hard to watch. I am very sad and can't stop crying. I know what I am feeling is normal.
I love him beyond explanation and my mind just screams how unfair it is. Why him?! I see our beautiful 9 year old daughter and I get scared. what do I say to her?
My mind is jumbled with so many thoughts. I would take his place if I could. What do we do as a family? Do we spend every minute together? Do we tell our family? Do I make a list of his dear friends and arrange a get together somewhere in the near future? I keep looking at him trying to keep each image in my head. I look at his clothes. I beg God to not take him away and that this is all a terrible mistake.
 
I am sorry you are having to deal with this. You really need to get to an ALS Clinic and get him examined. What symptoms is he experiencing ?It might not be ALS. Here is hoping!
 
Hi CJ
Thank you for the quick reply. My husband hasn't been diagnosed formally. He is going through the formalties in regards to tests. He is a doctor himself and he isn't opptomistic about getting a diffrent dianosis.
I aplogize if I sound scattered, I'm just so upset right now.
Can I ask? How is your husband doing? How are you doing?
Please write back.
Thanks
 
Hi Joe,
Thank you for your reply. He hasn't been formally diagnosed. He is going for test. He is a doctor himself and he know he doesn't feel right. I've seen him displaying the symptoms for instance, flat foot, tingeling, twitiching, sweating, wiping out when he walks down on stairs.
May I ask how long you have been diagnosed? I'm sorry if I sound insensitive, I'm just very upset right now. So I aplogize.
 
No reason to appologize. My whole story is here; Living and Surving with ALS
Have a look then feel free to ask any questions you want.
 
Mrs. H,

My husband has had symptoms (that we know of) for 5 years, maybe longer. He was diagnosed 09/06. He is still walking, but unsteady on his feet due to atrophy with upper limbs (no balance) and falls almost daily. He will be 52 this year. He can barely feed himself or speak. But, he is still the same person he has always been and deals with this amazingly (most of the time)! I've never met a more positive person.

I hope the best for your husband!

Oh- Our son just turned 10. I've done the "looking at clothes" thing!
 
Mrs. House, when my sister went to the hospital recently with hyper-reflexes/weakness and the doctor raised the possibility of MND/ALS, I experienced the exact same kind of terror, confusion, anger-- you name it-- that you're going through right now, and that was even before any of the significant diagnostic tests. One of the most helpful and inspiring things to me was to read and learn about the people on this forum coping with and surviving this disease. It made me realize that even with a worst-case diagnosis, I could still have my loved one with me for some time to come, whatever the more grim statistics may say, and whatever the difficulties/challenges. Keep seeking medical care in the hopes of a different diagnosis, but know that if it does indeed turn out to be ALS, the members of this forum are an amazing example of the time you still have to enjoy and cherish with your husband.
 
Mrs. H,

My husband has had symptoms (that we know of) for 5 years, maybe longer. He was diagnosed 09/06. He is still walking, but unsteady on his feet due to atrophy with upper limbs (no balance) and falls almost daily. He will be 52 this year. He can barely feed himself or speak. But, he is still the same person he has always been and deals with this amazingly (most of the time)! I've never met a more positive person.

I hope the best for your husband!

Oh- Our son just turned 10. I've done the "looking at clothes" thing!
Hi CJ
Reading your last entry made me feel really good. I'm happy to hear your husband has surpassed the 3 to 5 year sentence I've been reading.
What does "looking at clothes" thing mean? Our little girl is 9.
L
 
Mrs. House - L -

Everything is normal, and nothing is normal. Your feelings are going to run from one end of the spectrum to the other. This forum is such an incredible place to find answers, strength and comfort. Your in my thoughts.
 
L-

To answer your question about looking at clothes, you posted
I look at his clothes.

Perhaps, I misinterpreted what you were referring to. At first, I looked at all my husbands smart suits, pressed white shirts and matching ties that we had picked out. When he got a new job, I displayed the new suits we bought with shirts and ties to surprise him after they had been altered. He was a fantastic sales person (still is). We were considering moving so he could take up a sales management position in another state. Ahhh...

So, after diagnosed, I looked in the closet one day and mourned the loss of his career as he has, as I looked at his clothes. He so misses putting on his dress shirts, suits and ties! (Even though, he would wear one brown shoe and one black sometimes...LOL...he's color blind!) He wishes he could still work, as he loved what he did. I never thought about it much, but he always said jokingly, "clothes make a man." But, I know differently. A man's heart is what makes him who he is and my husband has a HUGE heart.

Now he wears t-shirts and pants with elastic waistbands, worn out from being favored due to comfort and ease of dress.
 
CJ - I know exactly what you are saying. My husband was just about to buy his division of his company when the symptoms started. Same thing now, t-shirts and elastic waistband shorts - it is very, very painful.
 
I'm glad I found this. I am going out tomorrow to get my hubby some elastic waistband pants. He's had problems with his jeans for about a year now, but now, it's almost impossible for him to use a button or zipper. Things seem to be going fast right now, and I just pray his condition will slow down. He's going to be 55 this year.
 
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