ST/PT

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SpeedyMarie

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Joined
May 24, 2019
Messages
26
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
Hello everyone!

So I had my first Speech therapy session today. I’m losing voice power a bit so order for voice banking and my therapist is ordering several eye gaze machines to figure out what will work best so I can practice before I need it. Excellent care but my PT therapist not so comfortable. I wear support shoes Danskos they give my weak left foot and leg some support. She was stuck on tennis shoes - ugh I need ankle support I tried to show her the limited ROM and she told me well it’s not your dominate leg - I told her it has worsened I used to be able to move the foot and ankle the same as the right. My left leg drags now when walking I didn’t me she’s never seen somebody early into ALS and is only seen people that are bedbound in hospitals. Joy so she said we need to work on endurance. Hmm what is normal for PT in early ALS? Any suggestions? thanks
 

swalker

Very helpful member
Joined
Dec 11, 2014
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1,143
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DX MND
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07/2014
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Vail
Not that! My wife is a PT whi worked with several PALS before my diagnosis.

We do passive range of motion, which helps a lot.

Steve
 

Nikki J

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Agree. Stay away from that PT. She doesn’t understand ALS. Trying to build endurance / strength is not going to work on affected muscles Was an afo mentioned?
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
26
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
No, She told me that they don’t place braces on people or use any adaptive equipment like canes or walkers. I ordered an AFO on Amazon for my left foot I’ll try it out myself. It was night and day between speech therapy and physical therapy
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
26
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
Not that! My wife is a PT whi worked with several PALS before my diagnosis.

We do passive range of motion, which helps a lot.

Steve

Thanks Steve I was kinda of expecting that. I looked up some passive ROM and exercises for my left ankle spasticity. Here’s hoping the treatment plan ends up better
 

Nikki J

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Joined
Mar 22, 2012
Messages
8,315
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
No, She told me that they don’t place braces on people or use any adaptive equipment like canes or walkers. I ordered an AFO on Amazon for my left foot I’ll try it out myself. It was night and day between speech therapy and physical therapy
That they don’t send you somewhere to get them or that they don’t recommend them? if the latter is completely ridiculous. Is this a PT associated with or recommended by your clinic? Of course PALS use afos and walkers ( not canes as much). I was sent to an orthotist for my afo but the PT discusses / recommends walkers, pwc and the ot does the hand recs. I am sorry you have to deal with this
 

KimT

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Joined
Nov 18, 2014
Messages
3,635
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PALS
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08/2015
Country
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South
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The Beach
Good grief.

Unfortunately, I've had to train medical providers and educate them. I don't have drop foot but have a weak ankle. My PT did ROM on all my joints, then did massage on my leg when the knee wouldn't straighten out. They had treated MS patients and MD patients and their therapy helped me straighten my leg.

Sounds like you need an AFO. I'd find another PT.
 

ReginaS

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Lost a loved one
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LL
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--
I still remember the extra energy and tension these kind of experiences caused for me and my partner. It makes for strange discussions when the patient and caregiver tell people who consider themselves professionals and specialists that whatever they are thinking with all their expertise does not make sense in this particular situation.
We had a home healthcare nurse who wanted to order PT so that my partner would walk more w. a cane rather than using the walker - i.e. 'get better and more active'. I tried to tell her that that might not be the right course of action and she countered me w: "I beg your pardon... I disagree....". Very firm and polite. I hope she learned from it. We then put the PT who come in the house in touch w. the PT of the ALS clinic. In the end all worked out.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,143
Reason
DX MND
Diagnosis
07/2014
Country
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City
Vail
When my PT wife is not able to work on me, I visit a local PT whose grandmother, unfortunately, was a PALS.

He is wonderful. He knows what to do and what not to do. I feel very fortunate to have folks with such experience in my small community.

Steve
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
759
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
When I saw PT at a rehab center in early als I felt they didnt have much experience with als and werent much help. But now that my disease has progressed I see PTs at home through VNA Care. They have worked with PALS before and theyre great.
 

Dee Dee 0617

Active member
Joined
Nov 27, 2019
Messages
76
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
Hello everyone!

So I had my first Speech therapy session today. I’m losing voice power a bit so order for voice banking and my therapist is ordering several eye gaze machines to figure out what will work best so I can practice before I need it. Excellent care but my PT therapist not so comfortable. I wear support shoes Danskos they give my weak left foot and leg some support. She was stuck on tennis shoes - ugh I need ankle support I tried to show her the limited ROM and she told me well it’s not your dominate leg - I told her it has worsened I used to be able to move the foot and ankle the same as the right. My left leg drags now when walking I didn’t me she’s never seen somebody early into ALS and is only seen people that are bedbound in hospitals. Joy so she said we need to work on endurance. Hmm what is normal for PT in early ALS? Any suggestions? thanks
Hi Marie, I was diagnosed three years ago now. Before my Dr. Figured out this was ALS he sent me for pt strength training. Of course it did nothing except exhaust, frustrate and worry me senseless. Keep that in mind when dealing with your vocal cords as well. I sang in our city choir. When I started to loose my voice (after what seemed like weeks of crying ) I asked for speech therapy and was told it would not be advisable as it could cause my vocal cords to deteriorate quicker. I have a whisper left, I am so thankful for eye gaze technology. Hang in here, conserve your energy, both physical and vocal, be kind to yourself.
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
26
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
Thank you all, I have to wait for Medicare to kick in so I can go to my area’s ALS Clinic. I’m stuck now in my health system that is more set for strokes and brain trauma not ALS. You guys have helped with the information. It’s hard when you have to fight everything with this but it’ll all shake out. I called my ALS Assoc. Care manager nurse she told me some PT’s just don’t get it and basically zeroed in on what’s happening with my ankles gave me some tips. After thinking about it it made me a bit mad I have UNM predominant and ataxia along with my LMN symptoms starting. Endurance lady can you help me grow more cerebellar brain tissue and motor neurons ugh. I’ll bring my husband basically I need ROM teaching and adaptive equipment now. Medicare should kick in hopefully February
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
759
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
Marie, there are some great ROM tutorials for ALS on youtube! Some of our CALS on this forum have posted some. That's how we initially learned before we got good home pt.
 
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