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hboyajian

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This has been on my mind since I lost my dad Dec. 23. He had just been diagnosed a few months earlier, though he'd had symptoms of muscular weakening for several years. I think older people don't get diagnosed sooner because many doctor's don't look farther than "old age." Anyway, he was given physical therapy exercises to keep range of motion and maintain strength and he did them with great determination and consistency for 5 years before the ALS diagnosis. All his doctors were surprised at his grip strength. Because he was still walking around, we were unprepared for his sudden loss of breathing ability. The muscles operating his lungs were unable to maintain function even with the bi-pap machine assistace. I began to wonder if he had ever done breathing exercises as part of his routine. I think he was not given anything along these lines, at least I never saw him specifically working on deep breathing. Maybe this is a good thing to do to keep function as long as possible. It is worth asking a physical therapist about, preferably one who specializes in working with ALS patients. It is too late for my dad, but I am curious to know if any of you do breathing exercises along with range of motion, etc.
 

Al

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Nope. No one has mentioned it to me but it's a good question. AL.
 

Patsy

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The respiratory system is affected by the ALS. The intercostal muscles and the diaphragm usually get affected when the arms/shoulders are affected by the ALS. That is why some of the PALS opt for the non-invasive positive pressure ventilation like the BIPAP or get a tracheotomy and a ventilator.
Below are links to 5 separate slide educational presentations on the respiratory system and problems/symptoms /treatments in neuromuscular and spinal cord injuries. If you follow the slides they should help you understand what is happening to your PALS and anticipate what to do next and understand what the doctor orders.
Usually it is the respiratory therapist that teaches these .

http://www.rehab.on.ca/mobile/resp_intro/

http://www.rehab.on.ca/mobile/resp_unit1/

http://www.rehab.on.ca/mobile/resp_unit2/

http://www.rehab.on.ca/mobile/resp_unit3/

http://www.rehab.on.ca/mobile/resp_appen/
Regards;

Patsy

Patricia Seguin-Tremblay,
Ontario, Canada
P.A.L.S. since 1998
P.A.L.S. (Person with Amyotrophic Lateral Sclerosis)
Tough times never last, tough people do. -Robert Schuller
 

liz

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At the ALS Clinic I was given something called a Spirometer and told to use it 10 times a day both to monitor my breathing capacity and to "exercise" my breathing.

Liz
 

vantec

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liz said:
At the ALS Clinic I was given something called a Spirometer and told to use it 10 times a day both to monitor my breathing capacity and to "exercise" my breathing.

Liz
Lis,

Do you even notice that if you try real hard, that you can get a higher reading on the Spirometer? I use one, and I think it is helping my breathing from getting worse, as fast as it would, if I didn't use it.

Conrad
 

vantec

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Patsy said:
The respiratory system is affected by the ALS. The intercostal muscles and the diaphragm usually get affected when the arms/shoulders are affected by the ALS. That is why some of the PALS opt for the non-invasive positive pressure ventilation like the BIPAP or get a tracheotomy and a ventilator.

.........
Patsy,

You seem to know a lot about ALS. Can I ask you a question? Is it possible to grow muscle, and I mean that my arm muscles are the biggest they have even been in my life, even know I've had ALS for 7 months?

Conrad
 
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CindyM

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Hi Conrad. Is your arm muscle bigger or have the others around it shrunk? Just a thought... Cindy
 

Patsy

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Conrad;
I have had a momentary increase in the bulk of the muscles of my legs, lasted 5 months and the weakness returned. I have not lost my muscle volume yet but I am weaker. I don't know why but I do have a slow onset ALS and that gives me the extra time to educate myself. I am also a retired RN, that gives me an advantage but I am not a expert.
Patsy
 
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