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MarieOC

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Hi!

My other half was recently diagnosed with ALS. He has already lost complete function in his left arm to the shoulder. Due to my own medical problems I am unable to go to his Dr appointments with him. I tell him to ask the questions I want answers to; but I suspect he is too scared to hear the answers. So, I come to you for information in a general way. I realize that ALS doesn't progress in any 2 people in the same manner; I'm just looking for a vague idea of what I am in for. FYI: He is 49 yrs old, general good health besides ALS & moderately overweight.

Can I expect the right arm to degenerate at the same speed as his left did?

Will exercising his lungs stave off the weakness his Dr predicts; even if for a short time?

Shouldn't he be walking (as long as he feels strong enough)? His family has turned into a limo service for him. It seems to me, lying about all the time can't be good for him. They won't even let him walk to the corner store!

Anyone have any helpful links to sites where I could get info on medical devices for rent or loan? ie. hospital bed, wheel chair, etc.

I know I could google this info myself; but I think I would rather hear from people with actual experience rather than gamble on getting good information.

Any advice would be greatly appreciated & I thank you in advance.

~Marie~
 

ptich

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Very sorry to hear about your husband condition. Nobody can predict speed of progression of ALS, but usually it can be extrapolated from the previous progression events - eg when he first felt symptoms in his arm, etc. Then there are intervening "platos" when there are no visible progression, they last on average about 9 months.

I am not sure about exercising lungs, but what I read is that getting on nightly BiPap early (when the first sleep deprivation symptoms appear) slows down deterioration of the diaphragm.
 

CindyM

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Hi Marie- glad you decided to join us although I am sorry to hear about your husband. I have a couple of thoughts regarding some of your questions:
  1. By all means get him registered at your local chapter of Muscular Dystrophy. They will have services, equipment to loan, lots of things!
  2. Make sure he gets treated at your nearest ALS center. They know the ins and outs of this disease and will have support and equipment when you need it. Check them out here:
  3. We go back and forth on the exercise issue on this forum. If you do a search on the subject from the tab at the top of this screen, you will see that many PALS (People living with ALS) are told not to exercise beyond range of movement exercises.
  4. Your hubby might live for many years. We have PALS around here that were diagnosed 8, 10, 15 years ago. But his life style will eventually become compromised, so having his relatives nearby and helping will pay off hugely down the road. Let them drive him!
  5. As a CAL (Caregiver for a Person living with ALS,) the time will come when one person cannot do everything alone. I advise you to begin now to practice accepting help, and go visit this site for the time when your 2 hands and a 24 hour day in a 7-day week are still not enough.
Finally, I want to congratulate you for doing the right thing. The more you learn now, the better it will be for both of you. So come and visit often, and ask anything. Folks around here are knowledgeable and very helpful! Cordially, Cindy
 
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crystalkk

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Marie,


Welcome to the forum, sorry about your husbands diagnosed.
Cindy did a great job as always answering your questions.

Who gave your husband his diagnosed?
I noticed you are from Oaklyn, NJ, I am from Philly ( I am not diagnosed ) we might be seeing the same drs.

please hang in there,
 

Al

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Hi Marie. Welcome but sorry about your other half. Generally speaking the opinion of most people regarding exercise is use it but don't abuse it. Walking is good as long as you are steady on your feet. Breathing exercises are good as well. If you search "breath stacking" there are some there. Can't say whether the other arm will go slower or faster. As they say, everybody's different and it really is true. Sorry we couldn't be more helpful.

AL.
 

MarieOC

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CALS
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12/2008
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Thank you for the quick replies. Looks like I have some reading to do!

He is starting BiPap tomorrow when the equipment arrives...so that's good.

He has a lot of trouble getting up from a prone position, no matter what he lays on; so I was thinking might be best to get a hospital bed now. Hopefully insurance will cover it. If not; I will certainly use the links Cindy so graciously provided! (Thank you, Cindy)

I am disturbed by one thing, though. He also found out that he has 2 herniated discs in his neck. His Dr. seems reluctant to treat them because he's not sure if the herniated discs or the ALS is causing his head to droop. The Dr put him on muscle relaxers; but they don't really help with the pain or the droop. I am torn between going against the Dr and seeking treatment from a different Dr vs. just trusting this Dr and doing what he says. My concern really lies with his quality of life. He's pretty miserable, and understandably so. I can only imagine how miserable I would be if I could only look at my feet 24/7! I also wonder if maybe a cervical collar might do any good. (But then I think...Wouldn't the Dr have prescribed one if it would help?)

Any thoughts or comments are welcome.
 

crystalkk

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Marie,

The cervical collar probably would help. Dr's always don't think of everything.
Is he going to the clinic at Pennsylvania or Drexel by any chance?
 

MarieOC

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He is currently seeing a neurologist from Cooper (in Jersey); but has an appt. this week at U of Penn. for the 2nd opinion & to get set up with Occupational Therapy.
 

Al

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Hi again Marie. Is your other half being seen by a General Neuro or is he going to an ALS Clinic? Sometimes the Neuro in town doesn't see many ALS patients so doesn't really understand what is going on with the patient. Sad to say but they look in the textbook written 10 years ago, say, sorry you're screwed and don't look at the whole picture. If it's muscular or nerves, must be the ALS so no point in going farther.
I'd get another opinion if the option is available.

AL.
 

MarieOC

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NJ
City
Oaklyn
Hi Al,

He is seeing a team of neurologists in a major hospital; not just a run of the mill doc in town. He is going to a comparable hospital next week for a second opinion. I am confident that he is seeing the best in our area; but my medical training makes me question EVERYTHING! I made him stop seeing his family physician; since she really doesn't have the knowledge to help him.

Poor Docs! They ought to thank the stars I can't go with him. :lol:

I am going to see if I can find an ALS clinic in our area right now, though.
 

ptich

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MarieOC, hernieated disks seem to be often associated with ALS. I read that weakening of abdomen and neck muscles is causing it. If by "treatment" of the herniated disks you mean a surgery, it may not be a good idea in his condition. You probably should ask for a consulation with a PT.
 

strikeout

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Crystal - I am curious which clinic you go to in Philly.
 

crystalkk

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Strikeout- Pennsylvania Hosp (it is a sub division of the U of Penn)

(Clinic day is Thursday) I am undiagnosed so I don't go to the clinic per say - but I am seeing the director of the ALS Clinic
It has alot of different nuero's on 2 floors.

Where does your husband go?
 
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strikeout

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Crystal,
My husband goes to Drexel (they're not ready to give a definite diagnosis there). He did go to Penn U once for a "second opinion" and saw Dr. McCluskey who was sure it is Progressive Muscular Atrophy.
 

crystalkk

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strikeout

Is he seeing Dr Terry-Heimann-Pattern or one of her associates.
I am seeing Dr. McCluskey. What is your opinion on the two drs.?
 
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