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Craig Mattice

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Jan 18, 2009
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PALS
Diagnosis
10/2005
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US
State
VA
City
Richmond
I was release last Monday from in-home to outpatient physical therapy. I went to the first session and they spent an hour and 15 minutes with me for the initial evaluation and exercise regiment. I was impressed and excited as to what this can do for me.

Fast forward to Thursday, yesterday, and my second session. I was turned off by the fact that I was immediately asked to fill out a performance survey on the practice. What? After just one visit? Give me a break!

I was then addressed by the therapists, asked a few questions about how I was doing, she adjusted my forearm crutches, we did some demonstrative exercises and was told to do them in 3 sets of 10 twice a day. See you next week! This took a total of 18 minutes and I was out the door. In the meantime she had two other patients she was working with.

My biggest sore point? Each visit, which I'm scheduled for a minimum of twice per week, is $40 a visit our of my pocket. Let me mention at this point that I am on Social Security Disability Income. Was/is it worth it? I don't think so!

When I think that I can have a Personal Trainer at my local full service YMCA for only $20 an hour, where do you think I would get the best benefit, short and long range? I realize I am having to take PT to get back to baseline prior to my brain stem stroke but really? Is this in my best interests?

Any of you had this experience? What are your opinions and comments on this? My goal for 2009 is to get into the best physical shape I can and lose some significant weight long term all while dealing with all of the challenges of HSP. My weight has become a serious challenge to my overall physical health.

Looking forward to your insights.
 

olly

Extremely helpful member
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uk
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hi craig

i honestly think paying for a pt is a waste of money.
you can do many things at home like stretching and general exercises,its just using common sense and knowing your limitations.
i have a pt who comes to my home when they can get round to visiting me:roll:
they come regular for a while then are gone for a few months.
i did start 6-12wks intensive therapy,they came twice and when i complained about cramping in my left calf and under my left foot(which has atrophy) they were like "ok we have to stop till the senior pt checks you out"...................that was months ago and there coming on the 4th feb.
i have been waiting for 10mths for an appointment for a foot/leg brace.

save your money craig,try some gentle exercises at home or try the ymca.
pt's are trained to know problem areas but if you are carefull,get regular check ups with your gp and neuro you are ok.
trying to loose weight with limited mobility is a dilema(though i battle trying to keep it on).
the only and best exercise to help with both your physio needs and loosing weight (will help also with any heart,circulation problems that may have caused your stroke) is swimming.
swimming is the best cardio,gentle muscle strengthening,calorie burning exercise there is.
the last time i went swimming was 2yrs ago and was too weak to do one stroke on my own so i gave up,but i hope i will be able to give it another go this summer.

i hope some of this is of help:smile:
 

Geo

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DX UMND/PLS
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Florida
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Ruskin
Get a Clue here Folks and hello Olly . These people are out to make MONEY ,Learn to do this stuff on your own as Olly has said .Ive Said this soooooo Many times here .YOU HAVE TO TAKE CONTROL OF YOUR PROBLEMS YOUR SELF . You cant expect these people, who know very little of your Disease to help you .They dont have a CLUE .Craig, My suggestion to you is Get a piece of rope or cloth and learn to do these at home by yourself . One i did was i sit down with my back against the wall and do leg muscle stretches ,you start by putting the rope or cloth over your toe right or left ,now pull it back toward you ,this will stretch the calf muscles ,hold it there .or you can sit in a chair with your legs on another chair .Your going to pull the calf muscles to where they expand and not contract ,your going to hold them a bit to make sure they stretch . PS Craig, i have heard your intro video ,i also have speech issues . Geo
 

Craig Mattice

Member
Joined
Jan 18, 2009
Messages
16
Reason
PALS
Diagnosis
10/2005
Country
US
State
VA
City
Richmond
Thank you for all of the great feedback and support. As of this afternoon I called and canceled my two appointments for PT next week. For the $80 out of pocket that will pay for a full month membership to my YMCA.

I know I can do all of this PT exercise stuff at home and on my own. Found a great website just full of diagrammed exercises depending on your goals and needs that can be accomplished with a basic workout band, rope, towel, or rubber tubing w/handles on the end.

Just could not justify the out of pocket expense for the return of alleged value.

Thanks again.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
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DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
If you have weight issues on top of PLS and dont do something about it ,You are part of the problem and not part of the solution. For those who have other Health issues besides PLS you need to evalutate the symptoms of what you have along with the Symptoms of PLS
SOOOOO Many people here say they havent got the same symptoms as others .Well What else do you have ? Some symptoms have somewhat overlapping symptoms ,Like Arthritis or RA . I have taken the time to evaluate what i have with my symptoms so i can evaluate whats happening to me . SOOOO Many people expect others to make their mind up, simply out of the convenience of blaming others when something doesnt go right . Geo
 

kevinw

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Joined
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Messages
203
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DX UMND/PLS
Diagnosis
01/2008
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PA
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Thanks Craig

I wanted to say Thank You for your reply in the other thread regarding the HSP testing, at this point I pretty much have it on hold not seeing any benefit from it at this point (some of the symtoms don't seem to fit right now for HSP).

Anyway, I do PT twice a week, at this point it is covered by insurance and the center that I go to had me fill out paperwork and they waive the co-payment so I pay nothing out of pocket. I have been going twice a week for a little over a month, for about one hour and ten minutes each time. They work on my legs mostly, difference balance, stretching, and walking exercises. Now the last two weeks they have me doing four different upper body stretches with the bands for my arms.

It is hard to say if I have any benefit from it, I know that it takes a lot of my energy after I'm done and it pretty much ruins me for the rest of the day. But it does not appear to help me in anyway with my walking and balance issues. The hard question is where would I be or how would I feel if I didn't try something (is this PT atleast helping me stay the way I was or would I be worse with my leg issues without it?) it's hard to tell. Atleast at this point I don't have any out of pocket cost, but I'm sure they will pull the insurance coverage if they don't start to see improvement.
 

sral

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thanks everyone for your insight on physiotherapy - I can understand Kevin's point in it being draining

Just the travel involved takes time. My mom does the stationary bike at home and some stretches mentioned here (Geo's calf stretch etc). I don't know if it works but at least it's conveniently done at home.
 

olly

Extremely helpful member
Joined
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Messages
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to all.

craig
the ymca would be ok but if you could go swimming to a local pool that would be better.
they do water therapy to help with various illnesses and disabilities,its also used for stroke patients.
the water supports the body and helps relax the muscles.
it would also help you loose weight in a gentle way,having disabilities we can,t do any rigurous exercise for this.

geo
great to hear from you,i have been thinking of you and wondering if you are ok.
i hope you and your wife had a good new year.

kevin
i have only ever done 20-30minutes pt at a time,just this long is very tiring.
over an hour is too much,4xhalf an hour would be better.
my pt said its just to keep the muscles stronger for a bit longer,its never going to get us back to the strenghth we used to be but keep us mobile a little longer.

sral
how is your mum lately?
its good she feels upto doing a little exercise.

sorry i put you all together,my computer is playing up and running slow..............a bit like the old body lol.:grin:
 

kevinw

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DX UMND/PLS
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01/2008
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US
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Olly...The PT was something I was pushing for about a year ago, before I started getting all my test results back. The doctors didn't seem to think that this was a great idea (or they knew there would not be a lot of benefit from it, and just wanted to conserve my energy). For some reason, and I don't remember how or why it came up at my last visit to the ALS clinic, but I mentioned how that hospital had a rehab center near where I live and the PT at the clinic mentioned trying it at the rehab center. I think I thought I would see more results from it, but the PT there did say at my first visit/consult that it would be a matter of trying to maintain where I am at this point. I asked him if he got a lot of people with "MND" and he said "no". He has had one person at the current center he is at, and that he worked in a much larger center with about 14 PT's and they had only had a couple while he was there. He said for some reason the doctors don't order it, and I am starting to see why. Like I said maybe I expected things to go much quicker then they are, or maybe they will never get to where I thought they would in my mind, but physically it has been "just another disappointment" for me. On the brighter side maybe things will start moving quicker in the US with stems cells now, who knows?
 

Craig Mattice

Member
Joined
Jan 18, 2009
Messages
16
Reason
PALS
Diagnosis
10/2005
Country
US
State
VA
City
Richmond
craig
the ymca would be ok but if you could go swimming to a local pool that would be better.
they do water therapy to help with various illnesses and disabilities,its also used for stroke patients.
the water supports the body and helps relax the muscles.
it would also help you loose weight in a gentle way,having disabilities we can,t do any rigurous exercise for this.

:grin:

Funny you should mention this as my YMCA is one of the metro areas premier locations with two indoor pools including a lift for wheelchairs and a graduated ramp to enter and exit the pools. They have a specific Multiple Sclerosis/Neuro Muscular challenged aqua therapy class three times a week that I understand is well attended. In addition, they have a "Strides" aquatic class for beginners to aqua therapy the other two days a week. This is my initial goal.

I plan on starting out slow, pacing myself, but not hesitating to push the envelop as I have done all of my life.

Thank you for taking your time to respond and offer such great suggestions. :-D
 

sral

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Caroline,

My mom is doing as usual including much pain. I don't see her do her exercises but apparently she does the bike daily and does her leg stretches and strengthening exercises. However, she gets her days where she feels extremely exhausted. Last Saturday we were out for a good part of the morning and then she came to my house for the entire afternoon. She really didn't get a chance to put her legs up and rest. The following 2-3 days she felt extremely exhausted.

If things would stay as they are it would be much easier to make changes and adjust. The difficulty is that she feels (it's not visible to me) that she gets worse every day.

Wouldn't it be great for them to find a treatment for you all! I still am hopeful that they'll find something soon. My mom's neuro thinks it's about 5 years away.

Take care
 

Marjorie R. Wilcox

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Definitely find out what needs to be done and do it on your own at home. My Rick eliminated the physical therapy completely that way after his leg injury and surgeries... even eliminated the hospital rehab.

One week after the fixater was removed, he walked without assistance. He had hopped on one foot for 9 whole months! Even his surgeon said it wasn't needed as long as he did what he was told during recovery.

Big red flag here: The meaning of certified or licensed is: you pay money.
 

Zaphoon

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Joined
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Springfield
My last visit with a PT was a bit alarming. She advised against any kind of physical therapy at this point until the underlying cause of my problems is uncovered. This was in reference to my two frozen shoulders, one of which has atrophied.
 

Frizzel

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Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
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WA
City
Vancouver
The challenges of PLS

I was working with a PT for a few weeks and found I was doing most of what he was explaining to me at home. I now have someone who specializes in massage, pressure point, and relaxing/stretching the muscles that are in a constant state of spasm. It works for me. YOu may want to ask your doctor if you could get someone who knows the muscles, tendons and hotspots on the body to work with you. The therapist I'm working helps tremendously.

As far as stretching, exercise, moving, hot water, trying to be like the tortise, staying in the race... I can do all those things at home and away from the doctor's office.

The YMCA sounds perfect if the water isn't too cold. I have terrible spasms with cold water. My doctor actually suggested getting a big hot tub with my insurance and move about in the hot water and the whirl pool part of the hot tub. Of course, I wouldn't do it alone.

I have PLS and have since between 1997 after I had a severe case of Guillain Barre Syndrome. I do take Baclofen and if the spasms get severe, 1/2 a valium. That seems to keep them from taking my body into full blown body spasms.

Stay strong physically and mentally...say positive things about yourself and your future. Everyone lives with something...is it a challenge? sure... are we up for it? Together, I believe we can be. All the best!
 
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sral

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Hi Frizzel,

You're probably right that a massage therapist is perhaps better than a physiotherapist.

The hot tub sounds like a fabulous idea! I'm glad to hear your positive spirit and winning attitude after 12 years of having PLS. Are you still relatively functional?
 
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