how old

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Mom was diagnosed with ALS when she was 67.. and figure she's had it now for four years.. In her 5th year.. Last year it was not noticable.. 1 year later....ALS has got a good hold on her now..
 
Mom was just diagnosed last week, but has had symptoms for about 18 mos. She is 68.
 
Hello,

I started having symptons in Feb. 05 and was diagnosed. in Dec. 05 at the age of 45.
 
My husband was diagnosed last year, Nov. 06, he was 30 (now 31).
 
my husband was diagnosed at 48, last year 09/06. we believe symptoms were present two yrs before because of falling and tripping and breaking two feet and a leg on seperate occasions. then the next year hospitalized for not being able to swallow his own saliva.
cj
 
diagnosed

iluvmysoldier502 said:
how old are most people who have MND and at what age did they find out they have MND?:confused:

Dx at age 42. Onset of first symptoms at age 39.
 
My father was DX at 42, he will be 45 this month. It's almost 3 years exactly from DX actually. He had bulbar onset. We can barely understand him (anyone that doesn't live in the house basically can't). He got a PEG tube last fall. He's in a wheelchair exclusively, and can barely move his arms on his own. He is having troubles keeping his head up and his breathing has taken a turn for the worse. Not sure if this is just an episode or if it's going to end soon...still praying for our miracle.
 
Ben was first Dx June 2006 at the age of 65 second official Dx October 2006 died December 6, 2006. Now that was fast and cruel.... You never Know,
 
just found out today

my dad's 74 ,the onset probably was about a year ago,stumbled,fell several times but like most we thought it was age creeping up.now i find out it's bulbar ALS.dad's gone from a portly 270lbs to 140ish in just under 18 months. my mother died april 05 very suddenly of an brain anurisim, they were married 50yrs, dad misses her very much and i think that grief sped up the issue, i think hes given up he does not want to follow the doctors orders. they and i want a feeding tube for him. this is all to quick for me!
 
d.shaw

Keep talking with your dad. You'll come to the best decision that will hopefully support what your dad sees as best for himself and that you can accept for him. My family and I have had to make some compromises on both sides for my future. I'd encourage you to be open as your dad shares his personal hopes and dreams for his future with you. Wow, what a difficult place...we know.... and it can be done.
 
thanks

Frizzel said:
Keep talking with your dad. You'll come to the best decision that will hopefully support what your dad sees as best for himself and that you can accept for him. My family and I have had to make some compromises on both sides for my future. I'd encourage you to be open as your dad shares his personal hopes and dreams for his future with you. Wow, what a difficult place...we know.... and it can be done.
i know im in the right place for support,i have a feeling i'll need it....thanks again
 
I am so sorry to hear about your father, ALS is such a horrible disease. Does your father have his speech? My mother was diagnosed Dec 2006 at age 75, but was having symptoms much earlier - mainly leg cramps. She started with foot drop diagnosed Dec 05, which progressed to bulbar symptoms March 06. She did not want a feeding tube originially, but after swallowing issues and choking became a daily occurance she decided to have one placed. Her feeding tube was just placed April 2nd, which was a good decision for her.

It must be so hard for you - do you have other family nearby? It was harder for me emotionally when mom did not want the feeding tube. But I had made the decision to support her with whatever decision she made. Mom had "only" lost about 15-20 lbs, we had been supplementing her diet with protein shakes.

Just love your father - he has had a lot to deal with the last couple years. This forum is a great place for support.
 
Hello all.
My husband was diagnosed last Jan. and he was 45 - now 46 turning 47. I believe - looking back - that his symptoms started at least 2, if not 3, years prior, and it took 1 1/2 years to get a diagnosis. He was very fit, active - in great shape. Originally it started with his left foot - just didn't feel right when he ran and played hockey then started to drag, then he had dropped foot. Then it progressed to his left leg, right leg, and is now affecting his hands, arms, his ability to clear his throat (saliva), can't cough, etc. He has been using a bipap machine at night for a year and a half, but he gets extremely fatigued, can still walk a little (very little!) with a walker - mostly just to the bathroom. Thank goodness he can still talk and eat!

This disease is so horrible! To watch a man who was so alive slowly fade away is awful! My husband has also been suffering from depression about the disease for quite some time. I believe he has thoughts of suicide very often, but cares so much for our kids that I don't think he'd do it ( at least I pray he won't!).

Lately, he's been experiencing pain in his back. We have a special easy chair for him - has heat, vibrater/massage, and raises and lowers. Does anyone have any suggestions about wht we could do about his pain?

This thread is great and I hope it continues.
Beaner
 
Dear Beaner,
I'm very familiar with back pain since I was in an accident over 20 years ago and have suffered with constant chronic low back pain due to nerve damage since that time.

My Docs have tried everything to help me be comfortable, especially since I was Dx with ALS may 11, 2006 and spend all day in a wheelchair or lounge chair.

Other than pain medications the only other ideas I might suggest are getting a air cushion seat and back rest for him to sit on to help relieve the pressure points. I tried memory foam and it is just not enough for me. I know it helps a lot of others, that might help some.

The longer I sit the greater the pain gets until I have to go lay down to just relieve the pressure on the nerves in my lower back.

You can find many different types and styles on the internet. Just one site I was looking at now is at : http://www.spinlife.com/critpath/match.cfm?categoryID=91&adv=googleads&tar=air%20cushion

I hope this can help.

God Bless
Capt AL
 
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