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

[Daxx]

My cousin was just diagnosed with ALS/Lou Gehrig's disease. I've done a little research on it ... but what can I expect his progression to be like? What will happen, etc.? I am v. concerned and would like to hear any experiences w/this disease. Thanks in advance for any info. you can provide!

 

[DawnCt1]

I have no personal experience with ALS, but you should know that everyone's progress is different. Steven Hawking is the most famous person that I know of with ALS who is living and he has done his best work after his diagnosis. I hope that your cousin is able to adjust to a very difficult diagnosis to hear and keeps his spirits and his optimism up. Hugs to all of you.

 

[Chattyaholic]

My DMIL passed away a few years ago after a long battle with ALS.

It started for her in her speech, she slurred her words just like she was drunk. It took several visits with different doctors before it was diagnosed.

After awhile she had trouble eating, and had to move the food around in her mouth with her fork or spoon as she didn't have a lot of use of her tongue.

She ended up losing the use of her hands, and eventually her arms but she never lost the use of her legs so did not end up in a wheelchair.

She was given about 3 years to live, and she surpassed that by 2-3 years but it was a long, hard struggle for her.

At the end she couldn't speak, and was fed through a feeding tube which she resisted more than a year after it was suggested she have one.

She was a very courageous, and faith-filled woman. She always had a smile, and you never once heard her complain or say "why me." Her attitude was amazing. Gosh, I'm tearing up just writing this. She was a wonderful woman and I still miss her. She's been gone 8-9 years now.

I can never listen to the song "How Can I Tell You Goodbye" by Patty Loveless without tearing up, because my MIL used that song as the format for a letter she wrote to her children before she lost the use of her hands.

Your cousin has a long battle to fight. Family support will mean a lot.

 

[jacksonsmom]

I am sorry to hear about your cousin. ALS is an awful disease.

My dad has ALS and it has been hard on the family watching him get weaker and weaker from this disease.

The thing to remember everyone will progress differently, some faster then others.
My dad was officially diagnosed in January of 2006, although he had problems before that (weakness in his hand, etc)

Currently my dad can still walk on his own BUT within the last few months his right leg is getting weak. He is walking very slow now. We know the wheelchair isn't too far away.
His right arm/hand is totally useless and his left side is only slightly better.

My dad has a lot of trouble swallowing. He will choke on food because of those issues. The doctors would like to put a feeding tube in BUT my dad does not want one, at least at this point. He MAY change his mind but he may not. Whatever the case it has to be HIS decision and everyone else just has to support him.

He will NOT go on any machines to help him breathe. That is usually why you hear of ALS patients living longer then most. My dad has told everyone he doesn't want to "live" with a machine breathing for him. So we will respect those wishes.

My dad's speech has been greatly affected by ALS. If one was to hear him over the phone they would think he is a stroke patient. He is very slurry and hard to understand. I can understand him for the most part but within the last month I've been having more and more trouble. He just recently got a computer that will talk for him. He doesn't like it too much but he will have to get use to using it.

The thing that is the hardest is to watch a once strong and fit man turn into an almost helpless man. He has lost a total of 40 pounds since this started. He use to be a fit man of 160-170 lbs so you can imagine how frail he looks now.
He has always been a hard worker so this has been hard on him asking for help or letting others do things for him. He can still feed himself if someone puts a spoon in his left hand but he can not dish up his own food or even get a glass of water for himself.

He can not shower or any other bathroom needs by himself anymore. I think that is the WORST of this whole crappy disease, is that it takes away your diginity.

ALS shows no mercy! But my one advice is BE THERE for your cousin, to listen, to talk, to laugh, to cry....just being there to help when needed.
Sinec my dad's illness we have seen some of his friends slowly pull away. Although my dad has never said anything, it hurts.
I think sometimes people don't know what to say or maybe they are scared because they see themselves in the sick person, I don't know...but please be there for your cousin through thick and thin, even if it is hard on you. HE will need family and friends support.

Feel free to PM me if you want to talk.

 

[ilovepcot]

As a nurse, I specialized in the care of the ALS patient. It's probably the saddest and most cruel disease of any that one will ever encounter. The mind remains crystal clear but the patient is "trapped" in a body that will no longer work. They lose the ability to speak, walk, turn themselves in bed, eat and finally lose the ability to breathe on their own.

Each of these challenges will be met...from devising a way to communicate using the patient's "blinks" (yes, they can blink their eyes without problem), surgically inserting a feeding tube, to finally a respirator to aid in breathing. There comes a point when they will require total care and there are nurses (like myself) that are specially trained to deal with all this.

I do know there is a computer that can work off the "blinks" of a patient. The last patient I had happened to have one but he became frustrated with it and the nurses never did get to see how well it could work. His family had purchased it in hopes he could use it to communicate. We, instead, devised our own way of communication by dividing the alphabet into catagories and having the patient "blink" at appropriate times. We got *fast* at this and it became a fun game for the patient.

Would like to say how sorry I am your family is facing this. But....if I'm correct from past experiences, this cousin of yours will never complain, will handle this difficult time in his life with dignity and the family be be drawn closer. This disease has a funny way of making all affected by it much stronger.

Please PM me with any personal questions you may have...there is soooo much more I could share.

 

[Daxx]

Thanks for your stories. I appreciate them and now know how things will go for him. I know that everyone's case is different, but this will give me an idea of what to expect.

Sadly, my cousin lives in Michigan and we don't get to see him often. I will be sending cards to him, though, as he and his family go through this. I feel terrible ... he's 42 and has 3 young sons. I know this will be v. difficult for him. From what my Dad told me (my cousin called my Dad to tell him), his speech is slurred and I guess it all started when he had trouble w/his hands, holding things, etc.

There is, as far as my Dad knows, no family history of ALS on our side.

 

[jacksonsmom]

There is, as far as my Dad knows, no family history of ALS on our side.

There usually isn't. (although sometimes there is) No one seems to know why a person comes down with ALS. It seems to strike without warning and affecting all walks of life.

The scary thing about it is no one is "safe" from it and since no one really knows what causes it, we really can't protect ourselves from it.

 

[ilovepcot]

ALS is "familial", meaning it shows a family history about 10% of the time. Several genes associated with ALS have been identified or at least mapped to a specific region of a chromosome. It's now rather common for children of ALS patients to be tested. Thing is, none of my patients (have been many) could recall anyone is their families ever having had this disease. They were asking grandparents to think back...no recollection at all.

 

[jacksonsmom]

Thing is, none of my patients (have been many) could recall anyone is their families ever having had this disease. They were asking grandparents to think back...no recollection at all.

same here, there is no family history as far back as we can look, no cousins, aunts, grandparents, etc knows anyone in the family that had ALS.

The thing is ALS seems to me to be on the raise. I hear more and more people that have it. Just in our little town alone 3 people are currently battling it, all diagnosed within the last 3 years.

I never met anyone with ALS that has a family history. With all of them it seems to strike with no rhyme or reason.

 

[ilovepcot]

The last patient I worked with was for a period of 3 years. All the nurses got to know the family very well and they were wonderful people. We'd often have conversations like this...where ALS came from, does it run in families, etc. I know there was mention at the time about an unusual number of professional football players coming down with the disease. Don't recall if they were from the same team or not, but it was questioned then as to whether trauma to the body could "unleash" something in the body that set this off.

I will say this...I have recently been diagnosed with PMR, an autoimmune disease. On a PMR chat board, everyone with this disease has admitted to having some type "trauma" to the body roughly a year before being diagnosed. My car was rear ended by a man talking on a cell phone. Others had very similar things.

 

[jacksonsmom]

, but it was questioned then as to whether trauma to the body could "unleash" something in the body that set this off.

I

I have heard that as one of the theories out there for ALS.
I guess one just doesn't know and I am sure everyone's bodies response to trauma differently.

In any case, ALS is such a horrible disease. It breaks my heart when I hear of people battling it.

 

[Rock'n Robin]

I am teaching "Tuesdays With Morrie" to my general senior classes and I would recommend it if you haven't read it. It will give you some ALS info but it is also a great outlook on life.
Robin M.

 

[hentob]

So sorry about your cousin--So young

Here is a very imformational site on ALS:

http://www.focusonals.com/

And here is one (with a sad ending ) written by a man who had ALS:

http://www.lutheroutloud.com/

 

[huckster]

all to familar , mom had this she survived 3 years after they told her what it was , as stated every one is different. mom lost her speech , walking first , she could write for a short while, pnuemonia is what was the final cause of death , it was horrible to watch , God bless your family stay strong and be there for them, i try not to think about it being heritary..would not want to be tested nothing i could do about it any way , no o ne in our family has had it before her.

 

[taximomfor4]

I am teaching "Tuesdays With Morrie" to my general senior classes and I would recommend it if you haven't read it. It will give you some ALS info but it is also a great outlook on life.
Robin M.

I was JUST going to recommend that book. I read it after being particularly troubled, taking care of a patient with ALS. My daughter had it, for Honors English summer reading. Very insightful.

Beth

 

[SueM in MN]

Some other good websites:
The ALS Association

Muscular Dystrophy Association's ALS Division.
One of the things that is often recommended is to begin work with a speech therapist early in the course for things like learning how to speak while using the least energy and things like this suggestion from the MDA site:
"Early in the disease process, while speech is still normal or nearly so, speech therapists may suggest that a person with ALS record his or her speech. A number of phrases can later be programmed into a computer, or perhaps the person would like to talk about his or her life for future listening by friends and family."

On one communication forum I am active on, a Speech Therapist was asking for some advice to help one of her clients. He had not recorded himself and his dog would not respond to his 'computerized' voice. We didn't come up with anything, but it must be hearbreaking to have something like that happen. I know some people have recorded themselves saying phrases like "I love you". All of the communication devices on the market will accept digitized speech recordings.
It's easier to learn to use a communication device before it's actually needed, so a lot of people start looking for one while they can still talk (that also allows them to personalize it and record speech right into the machine before they need to use it).

My DD's communication device is from is Prentke Romich. Besides having touchscreen access or using a switch, most of their devices also have the option of 'eye gaze'. A person using that system wears a reflective dot on their forehead. An infrared receiver on the device picks up the location of the dot and from that, figures out what part of the screen the person is looking at. It can be frustrating to learn at first, but if the person keeps practicing, it can be a very good system and I have seen people who are quite fast at it.
Dynavox Technologies is another company that makes computerized communication devices.
Stephen Hawking uses a machine from Words-Plus that has been adapted for him. I don't know exactly what computer he uses any more because his website is not up to date, but the software he uses to communicate is called EZ Keys.

This is a link to Stephen Hawking's website. He was first diagnosed at 21 and he's now 65, so he's lived much more of his life with ALS than without it. His essay on that page is wonderful.
One of the things that is difficult for people with ALS - the progression of the disease is not known. One person may live with it (quite disabled) for 40+ years like Dr. Hawking and someone else may die after only a few years.

And, last, here's a link to some videos of people using other computer products made by a company called AssistiveWare. The video titled "A pivotal role in the household" is about a French woman with ALS. Even though she can only move her cheek and her eyes, she is still very active (with help of her computer) and converses in English and French. She also has an excellent website in both English and French where she talks about the progress of her disease and how she does things.
Seeing what can be possible in a video like that makes me feel really sad for people who have no other option besides spelling boards or 20 questions.
The other videos at that site are amazing too, just seeing what people who have very little movement can do with the right equipment. I've been at a talk that the lead developer for AssistiveWare spoke at and I've seen the guy in the video called "One thumb to rule them all" at the same conference (he has Spinal Muscular Atrophy, not ALS). He can scan so fast that you can't even follow what he is doing; his body might not work, but his mind is so sharp.

 

[Just Jan]

This issue has recently resurfaced in the town I grew up in and lived until about 16 years ago. I lived in within this area. I was diagnosed with Hodgkin's Disease 15 years ago. Who knows if there is a connection or not?
Here is a story that ran on a Boston News station. I know the gentleman in this article (Arnie Salley).

Apparently, there are 29 people who have passed from ALS in this area. That is a HUGE number for a 1 mile area. Two of the people lived in the same apartment but at different times. That's a little too much of a coincidence.

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

 

[jacksonsmom]

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

Your link doesn't work. I would really like to read it. Can you double check the addy?

Thanks!

 

[powellrj]

http://www.pbs.org/wgbh/pages/frontline/somuchsofast/etc/faqs.html

I had just watched this special a few weeks before my DMIL was diagnosed with ALS. If you get a chance to ever watch it, it really shows what the disease can do.

My DMILs story is so different from any I have heard. She had been losing weight for more than 3 years and was just getting weaker and weaker. Her doctors were testing her for different types of cancers because she had breast cancer several years earlier. She was going through test after test after test. When she finally got down to 88 pounds (she was 5 ft 10 ins) they admitted her to the hospital. She was there for several weeks before they sent a neurologist to see her and run tests. I have no idea why it took 3 years to send her to a neurologist, but he saw her on tuesday and diagnosed her or at least told her and my DFIL what they had found on a friday at 6pm. She died at 6am saturday morning. I don't know why she died so quickly, she had been up talking to DFIL before he left that night to tell the family the news and had been sitting up in bed saturday morning at 5 am talking to the nurses and while she was sick, she was doing better than she had done all week. While it was hard on DH, when we knew what was ahead of her, we were just glad she didn't have to suffer anymore than she did.

I wish all the best to the family.

 

[ilovepcot]

Your link doesn't work. I would really like to read it. Can you double check the addy?

Thanks!

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