ALS/Lou Gehrig's Disease - Anyone Familiar? Help/Info!

[Just Jan]

Like you, I was interested in reading this article and went searching. See if this link works.


http://wbztv.com/local/local_story_281143021.html

That's the link. Nice work! you can also click and watch the part they had on the news.
I also Googled ALS cluster and came up with many sites.

 

[Feralpeg]

I lost both an uncle and a very dear friend to ALS. Both developed symptoms in their early 30s. I was very young when my uncle died. I just remember going to visit and he couldn't do anything for himself. He'd always been a big, strong guy. It really scared me at the time.

I won't kid you. It is not a pleasant way to go. My friend, Roger, only lasted about 2 1/2 years after being diagnosed. By the time he died, he was barely recognizable. He literally wasted away. I hate ALS.

OP, I am so sorry to hear that someone you care about has been diagnosed with this horrible disease.

 

[Judy from Boise]

I would reccomend searching for a physiatrist , and use him as your Doctor for the ALS. They are rehab doctor who know just when rehab can help people retain and regain function.
And I second the great advice on working with the speech therapist early!

 

[SueM in MN]

I would reccomend searching for a physiatrist , and use him as your Doctor for the ALS. They are rehab doctor who know just when rehab can help people retain and regain function.
And I second the great advice on working with the speech therapist early!

I second your advice to contact a Physiatrist (may also be called PMR or Rehab Specialists). They are experts in figuring out ways to do things while conserving energy, things like braces that help support weakened areas and all sorts of ewuipment that will make it easier for the person to remain as independent as possible for as long as possible.

 

[ilovepcot]

OMG...the things the mind "thinks" it sees. I read the 2 posts above as recommendations to see a "psychiatrist". I just sat shaking my head and wondering "why"? Okay, I came round and realized (finally) what you 2 posters were suggesting. Been a long day for me.

 

[SueM in MN]

OMG...the things the mind "thinks" it sees. I read the 2 posts above as recommendations to see a "psychiatrist". I just sat shaking my head and wondering "why"? Okay, I came round and realized (finally) what you 2 posters were suggesting. Been a long day for me.

Well, actually, a Psychiatrist might not be a bad doctor to have along for the 'trip'. The Psychiatrist and Psychologists see a lot of the patients at the Rehab Hospital I work at to help with depression and ways to handle stress/changes.

 

[catsrule]

My nephew has this. He is 35 years old with 3 children, 11, 9, and 5. He won't see them grow up. No one in our families has ever had this that we are aware of. He was diagnosed with this in Feb, 2006. Just one month after we watched my Mom (his grandma) die of colon cancer. Now we have to watch him go through this. He can talk but is very difficult to understand. He can stand but can no longer walk. He had to be fed now. He needs help to go to the bathroom. He cannot be by himself anymore. Someone must be with him 24/7 now. He now lives in a handicapped apartment. There are many different theories on what causes it but no one knows for sure. His doctor said plumbers, firefighters, and people in the military seem to get it at a higher rate than everyone else. Well he was a plumber and did work at military bases.

There is walk to D'Feet, a fundraiser for ALS held in cities each year. See my link below. My nephews team is The Flying Chipmunks.

 

[jacksonsmom]

Like you, I was interested in reading this article and went searching. See if this link works.


http://wbztv.com/local/local_story_281143021.html

Thanks! That link works. I am off to read the article.

 

[SueM in MN]

My nephew has this. He is 35 years old with 3 children, 11, 9, and 5. He won't see them grow up. No one in our families has ever had this that we are aware of. He was diagnosed with this in Feb, 2006. Just one month after we watched my Mom (his grandma) die of colon cancer. Now we have to watch him go through this. He can talk but is very difficult to understand. He can stand but can no longer walk. He had to be fed now. He needs help to go to the bathroom. He cannot be by himself anymore. Someone must be with him 24/7 now. He now lives in a handicapped apartment. There are many different theories on what causes it but no one knows for sure. His doctor said plumbers, firefighters, and people in the military seem to get it at a higher rate than everyone else. Well he was a plumber and did work at military bases.

There is walk to D'Feet, a fundraiser for ALS held in cities each year. See my link below. My nephews team is The Flying Chipmunks.

Muscular Dystrophy Association has a lot of information about research into possible causes on their webpage about ALS. There is research being done, but so far, nothing clear. (The research stuff is toward the bottom of the page, so you need to scroll down quite a bit).

 

[Judy from Boise]

I second your advice to contact a Physiatrist (may also be called PMR or Rehab Specialists). They are experts in figuring out ways to do things while conserving energy, things like braces that help support weakened areas and all sorts of ewuipment that will make it easier for the person to remain as independent as possible for as long as possible.

Sue and i are both Rehab nurses , my hospital has a great multidisiplanary ALS clinic every month, where people can get PT,OT,Speech, and Physiatrist evaluation, and walk out with a reccomended treatment plan. Maybe see where the closest Acute Rehabilitation Hosp is and see if they have a resource like this.

 

[Cantw8]

I am going to a beef and beer charity event next weekend that benefits ALS My neighbor's sister has ALS what a horrible disease

 

[Daxx]

Thank you for all the information and links. I am going to pass them along to other family members for them to read. I wish I could be closer to him to see him here and there. I feel so bad for his wife and kids. He has no family close by ... his Mom is in FL and his Dad (my uncle) passed away just this spring. His sister lives near me and we're v. close so I will be there for her since I can't be there for him.

 

[KLAIT]

I am so sorry about your cousin. In the last 3 years my SIL mother and my husbands aunt have passed from ALS. It is such a horrible disease.

It is true that each person is different. It was sad as my husbands aunt had it first and SIL mother watched her suffer with it for a few years and then was diagnosed herself. Horrible to know what is coming, but I also think it helped her to make some decisions herself..like if she wanted the feeding tube and the breathing tube.

Your family is in our thoughts.