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marianneSPT

New member
Joined
Feb 9, 2009
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2
Reason
CALS
Country
US
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Texas
City
Houston
Hello there,

I'm a second year physical therapy student and very interested in the Neuro field. One of our professors is eager for us to participate in a forum such as this one in order to gain appreciation for the experiences people go through when confronted with such a life changing experience. I think from her perspective, she wanted us to see both the psychosocial aspects as well as the practical "how do I accomodate/adapt physically" perspectives. I've spent some time peering into your world (it feels a bit voyeristic...) and feel honored to be able to witness just how tough you guys are. I am also saddened to hear that many folks have had such negative experiences with physicians (and possibly other health care providers?)

If you have a few minutes, I'd love to hear from you what you value in a health care provider (in other words, as a physical therapist what can I do to best assist you?)

Thank you again for this opportunity to share a very special place with you online. I truly hope that I have not intruded (and I'll respect your wishes and not return if you voice that concern.)

Marianne Pettys
Student Physical Therapist
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I want to thank you for your sincere concern for those of us that have ALS. You will get a good sense of what we need by reading through this forum but I realize there is a tonne of information here and you probably don't have thime to sift through it all.

One of the biggest things I was frustrated with is the lack of understanding about ALS that everyone in the medical profession seems to have. Over and over PT's want us to exercise and strain our muscles. When I got my tracheostomy and vent they wanted to ween me off it and were always bugging me to disconnect from my vent. ALS is not a disease that you get better from - it is a one-way trip downhill. It does irrepairable damage when muscles are strained. No one seems to understand this.

I am in a powerchair and they always wanted to get me out of it and walking, saying the sooner I do this the sooner I can get rid of it. Total misunderstanding of ALS.

I hope others jump in and offer suggestions - Welcome!
 

nspoc

Distinguished member
Joined
Mar 24, 2007
Messages
113
Reason
CALS
Country
US
State
Illinois
City
Olympia Fields
Hi -

The person in my care has had a lot of PT/OT experience. In most cases they push way too hard, do not get educated on the variations of ALS, and do not have enough range of experience in adaptive technology for neuromuscular disorders.

What do I expect from you? I expect you to be an expert on safe transfers, and the useful technology in transfering. Help me with transfer boards, gait belts and the array of lifting devices. Understand that this is progressive. Help me be prepared for future changes in my mobility.

Help with pain control through massage, correct body alignment and skilled recommendations for good beds. Don't just dump my PALS in a regulation hospital bed.

Train all my caregivers/family members in skillfully and safely moving me. Do your utmost, professional best to keep me functional and mobile. Be an expert on wheelchairs, arm mobility devices, independent feeding assistance. Know how to use the technolgy that is out there.

Understand that neuromuscular disorders are a specialty. Learn as much as possible. If you get a neuromuscular patient - call the MDA, ALSA or other local resource, for consultation. Be humble - do not assume what you already know will be enough.

Understand that depression goes with the territory - do not give up. All PALS want a fulfilling life - help by offering hope. Do not assume that death is imminent. You special gift is to help us live to the utmost the life we have now.

Devote yourself to helping your patient maintain as much funtion as possible by becoming an absolute expert in technology. Anything less is not good enough.

It is a tall order - there are a lot of really bad, presumptuous PT's and OT's out there - resting on outdated and wrong assumptions. You are the one discipline (outside of pulmonolgy) that can make a transforming difference.

Good luck! Beth
 

gbrown

Active member
Joined
Jun 13, 2008
Messages
77
Reason
PALS
Diagnosis
07/2006
Country
US
State
Virginia
City
Bassett
ALS and Physical Therapy

Marianne:

I have had ALS for almost 8 years and have done some kind of excercise every day. People with ALS need to know how to do range of motion and stretching excercises. Since muscle building excercises hurt instead of help, we need to know which excercises will help. I had a PT specialist come in for about 6 weeks, twice a week about a year ago and he showed me several excercises that I still do everyday.

BTW, you are the first medical person that I have seen ask what you can do to help PALS and that impresses me. Keep up the good work.
Gordon
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Marianne,

You are a sweet heart! Thank you for your sincere interest in people that have MND.

The last PT I was exposed to at an MDA clinic would not recommend any kind of physical therapy as I had not yet been diagnosed. So, what was I to do in the meantime, get weaker, atrophy and lose more range of motion? (That's kind of what I did.)

Since then, I've been given the news I've got PLS. I am hoping to have a visit with a PT on the agenda of my next appointment in March.

Since this kind of disease often induces emotional liability in its victim, please don't take any sudden outbursts too personally. We all really love our PT!

Zaphoon
 
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BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Marianne ... kudos to your instructor who is thinking about the other partner in all therapy ... the patient. My husband, who has Parkinson's plus chronic back pain, was sent to a physical therapist a year or so ago. It was a fairly big clinic, and the therapist set him up on the table in a position that creates the worst pain for him, turned on a heating pad and some music and left him for a half hour to "relax." He could only take it for a few minutes and was begging to get off the table. I headed out to find the therapist. Couldn't locate her anywhere in the office (turns out she was on break), so finally begged at the desk for someone to come help ... I didn't want to move him myself, for fear of hurting him. She helped me get him up, and we took off, never to return again. I think a therapist like that who is so clueless and disinterested in the patient's condition and comfort is not only incompetent, but is dangerous.

Currently, he is doing a very mild form of Pilates with an instructor who is working on her master's in PT. When I was diagnosed with MG, she read everything she could get on MG to design a routine that would help me. Then when I was diagnosed with ALS, she did the same. We discussed each week what muscle groups I could safely exercise and which could only be ROM. She checks our status each week before beginning ... any falls, any pain, etc. Since my husband has been diagnosed with Parkinson's, she is studying Parkinson's and designing programs that gently strengthen but don't overtax him.

I dropped out a couple weeks ago, by the way, when I realized that even ROM exercises with no resistance are too much. The exertion required to do even a half hour of any gentle movements exhausts me. So if you have ALS patients in the future, remember that it is not just a question of individual muscles being affected, but overall strength and stamina.

I think being alert to each patient's condition ... and being aware that neurological problems are constantly evolving, constantly changing ... is critical. You can't just take a medical history and figure you've done your job. And you can't just assume your routines are "one size fits all." Every patient is unique and you need to know what has changed since you last saw them.
 

marianneSPT

New member
Joined
Feb 9, 2009
Messages
2
Reason
CALS
Country
US
State
Texas
City
Houston
Thank you

Thank you so much for your candid responses! I have been inspired by what you have said, in particular the absolute necessity of keeping up with the technological advances out there designed to make life a little easier. It isn't too much to ask the person you are seeking professional services from to provide the best service possible. I also was saddened to hear about the experiences you've had with PT that understandably made you question competency! I suppose when one is detached from the experience, s/he may not realize just how significant those negative experiences are. It's not excusable, but brings home the message that remaining steadfast in the commitment I have made to provide health care must continue throughout the day, everyday. I am also excited for those of you who have had positive experiences with PT, too! Again, I thank you wholeheartedly for the time you've devoted to my request for info.

Please take care! I will keep you close in thoughts and prayers as I continue my coursework and prepare to work with patients. Your stories and guidance will continue to influence me as learn more about what appropriate treatments are out there for the variations of ALS I may treat in the future.

Warmest regards,
Marianne
 
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