Question about ALS progression

[ghii]

Hi Steve, I felt a need for something, just something and access this site and saw your post. Thanks. I don't have children, I cannot imagine having Als with a child 5 years old. It has to be killing. Last night Dateline was showing a mother with two children suffering from muscle dystrophy. It was so sad and heartbreaking. I cannot imagine the pain parents with children suffering from motor neuron disease must feel.

Mercifully my husband's progression appears to be slow. It started two years ago. He is still driving, his speech is slurr and eating is very painful and often scary to watch. You are right, every thing pale in the face of this devastating disease.

Hal, the neurologist told us he detected motor neuron disease in my husband's arms and legs. He told us also my husband's tongue stick out half way only accounting for the slurr speech. He mentioned lou gehrig. I did not know what lou gehrig is and dismissed it completely till I saw Als on my husband's form for breathing tests.

I never realize how much I fear the helplessness of paralysis till I come face to face with it. Like most things, it was something out there, happening to someone else till it becomes reality in one's life.

It does help being here like just now when I just want something to help me in this area.

 

[Twinsmom]

Dear Ghii,
I'm so sorry you're having to deal with the awfulness of your situation, but you have people here to hold you up, encourage and support you.

It's awful that your doctor didn't explain what Lou Gehrig/ALS was and would mean for you all. You will find this is a great resource.

Peace,

 

[MickMac]

Capt. Al, you are a brave man...to tell us of your journey.
Also, to help us on this site. I means so much and is appreciated!

 

[ghii]

Melodyparrish. I read headlines of soldiers killed but never the articles themselves. I avoid watching some news on TV- sort of protecting myself because I get transported there and get hit by strong emotion felt by those involved.

The doctor is very good and feeling. He stood and waited for me to ask questions. I did not, dismissing it completely. He must have thought I know about what lou gehrig is. However I do agree, it is not the best way to learn what it is, googling one early morning. I get sucked into the horror of the disease the same way and now find I cannot read on it. I read posts of those suffering it and get hit by strong emotion.

Just now I read some posts and it hit me the same way.

I think I better stay with meditation for a while.

Thanks.

 

[Shoney1]

Ghii, I found this sight a few days ago and have been reading lots of messages. When I read yours it touched my heart and had to reply. My husband was strong like a bull, could take on many heavy tasks and ask for more. He drove a semi (tractor trailer) for a living. Three years ago on a job, he's foot was crushed my a fork lift. He had many problems that errupted from that injury, anyway he was off his feet for over a year and when he could finally attempt to journey out he said he was tired all the time. We thought it was because he had been off his feet for so long. I'm going to fast forward through most of his rehabilitation and tell you that 2 years ago, he was talking to me and I turned to him and said you are talking like you have a sock in your mouth, what's wrong? He said he felt fine, he was being treated for emphazemia because he smoked and was having shortness of breath. Well, long story short, it was the onset of ALS. He also started getting breathy and not able to finish a short sentence. That's when we started seeking some answers. We went back to the pulmonary Dr. he sent us to the GP the GP sent us to Gastro, gastro sent us to finally the Neurologist where we started to find some answers, answers that broke our hearts. The Neurologist sent us to Johns Hopkins where we finally had a firm diagnosis, ALS in the end stages! My husband was the 1% that Als had attacked his respiratory system before it caused any significant limb weakness, only minimal. My husband died a week after our visit to Johns Hopkins at home and in his sleep. My sweetheat was 54 years old and like you said of your husband seemed to age within a year or so to 80. My heart goes out to you and I am so sorry for your loss. Your right, others are out there hurting too, you are not alone. If you want to talk, I'll be here. God's peace and Love to you both.

 

[crayola]

I am so glad I found this site. My sister was diagnosed with ALS about 3 weeks ago. She is 58 years old, and she weighs 87 lbs. She also does nothing all day except watch movies. Is this normal?

Thank you in advance for your replies.

 

[MtPockets]

I am so sorry for all you are going through, but glad you found this site for support.

 

[hopeful warrior]

ghil~ If you haven't contacted Muscular Dystrophy Association, (MDA) I highly recommend looking in to it. They have several avenues of helpful information. The spiral ALS and ALS Caregiver books saved my life for a very long time. The books discuss very specific needs that may need to be met as well as resources to help meet said needs. Also, reading them is not completely overwhelming.

 

[ghii]

Shoney1, that is so young, age 54. I am sorry you lost your husband when he was so young and in such a short period of time also. In a way, it is more merciful for him though sad for you.

Yesterday I found myself thinking, sure I know lou gehrg, by name only. I know it is something to be dreaded but that was all I knew. I never thought of those who have it or its very existence. It is just something out there and today I find myself entering a world I really do not want to enter. And entering it, find so many brave souls which calms me down. I still tear but cry a lot less now. My soul enters into a place of peace, kind of sad resignation. I do not like surprises so I prepare myself for the worst even as I go day by day. My husband is still driving. His eating has gotten worse. It is painful watching him. I am glad though it does not stop him from eating.

 

[ghii]

hopeful warrior,

Thanks. I will look into it. One of my sisters have auto immune sickness and mention something with M. It does not help knowing she has something with muscular dystrophy especially when she told me the doctor told her it is in the family and one of her 12 siblings are bound to have it. It appears to be my youngest brother who is struggling with sicknesses doctors are not able to diagnose. My sister however appears to be handling it well, with medication and exercises.



gertrude