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annpsu25 -> ALS (April 22, 2008 11:05:32 PM)

This disease is one that really disturbs me.  I have recently been 'intrigued' by it and have been researching this.  My question to PT's is:

Have you seen this in the clinic?
What is the patients clinical presentation?
What do you do with these patients?
What is the longest or shortest life span you have seen?

You all have been great with replies to my posts thus far, and I want to thank you all!  I have learned so much just by viewing posts on this forum.

Any additional information on ALS patients would be great!



PTupdate.com -> RE: ALS (April 23, 2008 8:24:15 AM)

1.   Yes
2.  Widely varied, and you may remember that recent post about the physician I examined.....his neck MRI came out to be horrible, and they at first suspected that.  However, with no neck pain, decent ROM, etc., he was going for other tests, and I have not heard anything.  The majority of my cases were not yet diagnosed when sent to me..some were in that discovery phase, others were just sent by GP's for the most noticeable aspect of their problem (at that time)
3.  Exercise, adaptive modification, education.  The guy below, while told by one MD he should not be exercising excessively, reminded him that what we had done to that point had restored quite a bit of his function
4.  I have not had anybody suffer a terribly short life span,  but some that I treated have passed.  I now have a gym member I saw early in the disease process, sent to me as they were digging for an understanding to his problem.  While I can see he has worsened, his breathing has been fine, he continues to run his own business, and comes down for exercise.



buckeye -> RE: ALS (April 23, 2008 8:45:48 AM)

1. Yes, but not frequently.
2. Agree with PTupdate that presentation is varied. Weakness that is not well explained by other pathology.
3. All the stuff PTupdate mentions - energy conservation, exercise (sub-max), avoid fatigue, education
4. Some have lived for many years with gradual decline. Many of them do not have long-term follow-up with me so I do not have knowledge of life span after diagnosis.



PTupdate.com -> RE: ALS (April 23, 2008 8:53:00 AM)

A few years back, we had a woman return who we had treated in the past.  By this time, her vocalization was gone, so she had a little tablet computer that used a very robotic computer voice to say whatever was typed in.  As she had a great sense of humor, it was fun to type in "Bob's an asshole" and then tell Bob to hit the speak button.  We had a lot of fun with her and that machine and it crushed me when she passed



james079 -> RE: ALS (April 23, 2008 10:06:52 AM)

Dr Steven Hawkins the cosmologist/scientist was diagnosed at 21. He must be about 65 now.
Jim McGregor



bonez -> RE: ALS (April 23, 2008 2:16:12 PM)

While not a PT I've seen 5 Providing the lead up dx on 2. The characteristic give away on both that I called was a subtle loss of facial expression due to poor tone.
I practice in a rural enviroment and often become first contact for a lot of these. Additionally softening of vocal power was also common to both.
the other three were seen after the fact. The oddest being a 74 yo male who was dx'ed lately in our community.
I aggree with PT update's recommendations remembering to be up beat and positive. The specialists for this condition are always grim by nature.



Sebastian Asselbergs -> RE: ALS (April 23, 2008 4:45:28 PM)

In 25 years, my experience is limited to two patients. Both were when I was doing home care PT in 1985. One had the diagnosis for two months and died a mere 4 months later - at 39. The other had the diagnosis for 6 months and died after I had stopped working in home care - about a year later.

So, for me ALS has had a "quick death sentence" aura since then - until Stephen Hawking's "A brief history of time" was published. And he is still going....



annpsu25 -> RE: ALS (April 23, 2008 9:15:00 PM)

Thank you all for your replies. It's amazing that Stephen Hawking's is still living, that is a miracle in itself.  I'm posting this because someone locally has been recently diagnosed with ALS, he is 25 years old.  I believe he was diagnosed last summer.  I saw him briefly earlier this week, and could hardly recognize him.  It's so sad how someone who has lived a normal life has to go through these body changes, all the while maintaining their mental capacity.  (Although, being diagnosed with ALS would probably drive me crazy.)  But who's to say?  I have looked up videos on youtube.com of people blogging about their disease, and I was surprised at what some had to say.



Nicole Matoushek PT MPH CSHE CEES -> RE: ALS (April 25, 2008 9:55:55 AM)

ALS typically progresses so quickly. I am surprised Dr Hawkins is still alive, I did not know that was what he was dealing with. 

If you have not read "Tuesdays with Morrie" by Mitch Albom definitely do so.



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