Resources and Support for ALS

June 23, 2008 1:59 PM

My father was recently diagnosed with ALS. I could use your help, particularly if you have personal experience with it.

After decades of smoking, it figures my dad would come down with a non-smoking related disease. He is in the early stages of ALS (Amyotrophic Lateral Sclerosis, AKA Lou Gehrig's Disease). Prior to his diagnosis, I had a cursory knowledge of ALS, most of it carried over from the movie The Pride of the Yankees. I didn't even know Steven Hawking had ALS. Today, my pops can still walk and talk, although the quality of both is deteriorating.

What resources, internet and otherwise, are available? Any suggestions on what we can do to prepare; particularly what aspects we should focus on? Any thoughts on support groups - medical, emotional or otherwise? Literature? Movies?

I'd prefer responses from those of you have personal experience with this disease, how to cope, but if your Google-fu is more powerful than mine, then links are also appreciated. We are located in SoCal. MeFi Mail if you would prefer private communications.

God I love my old man.

Thanks.

posted by jabberjaw to health & fitness (12 comments total)

My condolences.

If he still smokes, he should stop immediately so that his lungs have at least a little time to recover before things get bad. ALS typically kills via respiratory failure, and I expect impaired lung function would accelerate that (reduced tolerance for low respiration).

Immediately. Not tomorrow, now. Right now. Note that IANAD!

I've known two people who had it. Both were dead within five years; the younger one (30) was a smoker and died in two years. Whether this is related or not I can't say, but I personally think it is.
posted by aramaic at 2:22 PM on June 23, 2008

I'm sorry about your dad's diagnosis. One thing to consider is massage therapy (full disclosure: I'm a massage therapist). It can be very helpful for ALS patients because they lose muscle mass as the disease progresses, which means reduced circulation. Massage therapy is not regulated in CA so I would look for someone who is a member of the American Medical Massage Assn or at least has taken relevant continuing education courses. Your local hospice, oncology docs, your dad's docs, even ob/gyns are good sources of info. I haven't worked with ALS patients but I have worked with people living with other neurological conditions and massage has amazing effects. Once someone has been in the medical realm for a while, just being touched by someone in a nonclinical manner does wonders.

You and the rest of your family need to take care of yourselves as well.
posted by headnsouth at 3:10 PM on June 23, 2008

My condolences to your family. This is a tough time; you are doing the right thing to get more info while you can.

I am a speech-language pathologist, so my suggestions will center around areas I know a little about. This is not medical advice, and you should find an SLP in your area that specializes or is at least familiar with adults with ALS or similar degenerative diseases. These are just suggestions!

Definitely start with your local doctors, and get an SLP on board in the early stages. Talk about progression of the disease and how it could affect swallowing and communication. While your dad still can, have him outline his wishes for feeding should he be unable to sustain nutrition orally. Does he want a g-tube (a tube placed in his stomach)? does he not want that? what are the signs and symptoms of early swallowing difficulty? This is important because as his function deteriorates it can lead to aspiration pneumonia.

You also want to think about alternative modes of communication, particularly augmentative communication devices. A speech-language pathologist can help you figure out what might be the best fit for your dad and give him therapy about sustaining his voice for as long as he can. If the appropriate device is digital, he can record his voice NOW and use it to speak for him later on. All in all it would be nicer if he could still use his 'own' voice when he can no longer speak, rather than a computer generated one. It's better to start the process now, even if he can still speak, because it might take a while to get a device and get it set up.

If you are unsure of how to find a certified SLP, start with your physician, or you can go to the American Speech-Language and Hearing Association's website and search for a professional in your area.

For more info regarding speech, swallowing and ALS, you can look here:
ASHA article on ALS

All the best to you and your family.
posted by absquatulate at 3:40 PM on June 23, 2008 [1 favorite]

Wow, that's an excellent idea of recording ones voice now to have later when times are tough.

I don't have any specific comments, just that it might be inspirational to study past and present people who dealt with the disease. Lou Gherig, obviously. Eric Lowen, who is still a working, touring musician. And the ALS survivor of them all, Steven Hawking. Nearly 40 years now.
posted by gjc at 4:25 PM on June 23, 2008

Very sorry. Another survivor: Jason Becker
posted by ydnagaj at 4:43 PM on June 23, 2008

My most sincere condolences. From my experience, there are many forms of the disease and the time frame varies. I have known two people that had it. One was dead within 2 years. The other one was dead within 6 months. The progression was very swift.

The family of the person who had the swift form have talked about one decision that was made that they have no regrets about. I will just put it out there:

The person made it very clear that they did not want to suffer. The person was very rapidly paralyzed, unable communicate at all, not even able to blink. The spouse talked to the physician about alleviating the sufferer's consciousness. The MD told the spouse that morphine and other drugs could not be prescribed because there was no obvious pain, but then met the spouse behind an abandoned building late at night and gave the spouse morphine and instructions for the nurse. The sufferer was kept basically comatose until they passed.

This same sufferer recorded messages for the family members. These are cherished.

You probably have already found the link for the ALS Association. There is a lot of good info there.

The main regret of one of the survivors: that they felt that they didn't tell this person enough how much they loved them.

I agree with the massage therapy, and the quitting smoking. Also taking care of yourself-definitely a vote for a support group.

Again, I am sorry. If you have a specific question you can email me.
posted by bolognius maximus at 6:39 PM on June 23, 2008

Check your MeFi mail.
posted by zippy at 6:54 PM on June 23, 2008

"So much so fast" is a very honest and insightful documentary. Frontline also has some pieces of the documentary online. Your father's neurologist is also a good resource for ideas and what other families have found helpful.
posted by Spurious at 7:24 PM on June 23, 2008

This blog details the daily life of a man from just prior to his ALS diagnosis until his....well, let's just say there wasn't a happy ending to his story. The blog is not an easy read, but it provides a lot of insight into the effects of this dread disease on the patient and his family. My heart goes out to your dad and your family.
posted by Oriole Adams at 12:58 AM on June 24, 2008

My mother died from ALS 4 years ago. She was in her early 60's. After her diagnosis she came to live with us... until hospice.

If there is any advice I can give, questions I can answer or anything else, please contact me through Mefi mail.
posted by hilby at 8:45 AM on June 24, 2008

Thanks everybody for all of your help and advice so far - much appreciated.
posted by jabberjaw at 1:42 PM on June 24, 2008

Sorry.

I have no direct connection to ALS but this series written by a newspaper columnist who discovered he was afflicted blew me away.

All the best.
posted by raider at 8:02 PM on June 24, 2008