Physical Therapy

[Guest guest]

My 70 year old husband has had diarrhea for 7 days and been in the

hospital for 4. It turns out he has a duodenal ulcer and an

infection. On his release he will be presciped PT and OT. I would

like to take advantage of this and get the best for his CMT. What do

you recommend?

He could walk with a cane with inserts in his shoes but slowly and unsteadily.

He falls occasionally but his bones seem to be strong. He has an electic

scooter for long distances.

Elinor

[Guest guest]

Elinor,

I assume your husband's Dr. has referred him to a PT. Having said that,

the first meeting with the PT will be an overall evaluation, and a plan

set, including types of movement, treatment,lower body and upper body

strengthening etc. I would especially ask about balance training as well as

stretching he can do at home.

Gretchen

[Guest guest]

I forgot to say there is a good article about PT and OT (in relation to

CMT) in our Files section.

[Guest guest]

Elinor:

Whatever his PT and OT want him to work on. They will know his abilities and

weaknesses the best. Be sure you are there for his appointments with his

therapists. Ask questions if you are confused or need more info.

Marin from Bridgeport, CT

[Guest guest]

Jackie,

What good news to hear about your Physical Therapy progress! It's a

shame it took so long for you to get it, but I am happy you are now

seeing it's benefits.

Gretchen

[Guest guest]

Hi in Conn,

I agree a PT would be great to work with me on how to use the braces correctly

unfortunately I have seen several this year and no one will work with me or even

show me how to use a cane.  I have had the same luck with neurologist,pain

managment, OPT, etc.  It's been a long battle so I am taking my little success

with the orthotist and doing it on my own.  Even the MDA would not take me as a

patient which shocked me and there was a neurologist a PT and an OPT who said I

was as good as I will ever be and PT and OPT would only make me worse.  I wish I

had some one I could see more than an inital evaluation.

Andy

________________________________

From: Marin <emarin77@...>

Sent: Wednesday, January 28, 2009 1:06:24 PM

Subject: Re: I wish there was a standard of care for AFO use Who really

is a AFO expert ?

Andy:

I'm happy that you were able to get the assistance you needed. It would also be

beneficial if you found a physical therapist to confirm that your braces are

working the best for your needs. I know that you are feeling they work well now

for you now but you never know what could happen in the future. I get really

nervous when I hear people purchasing AFOs when they do not have a PT looking

over what AFO device they use. PTs are trained to know what AFOs are best for a

patient to use to affectivelly walk and maintain balance.

Marin

[Guest guest]

Andy:

If you live in Northern NJ you can go to Helen hospital in West Haverstraw

in Rockland County, NY for physical therapy. That is where I got my physical

therapy after I was first diagnosed. The staff there are supportive and

wonderful. It is a county rehab hospital. My grandfather even went there when

he got into a car, truck accident on Interstate 278. He felt the staff there

were supportive and helpfull too.

Marin

[Guest guest]

Thank You

I wish I lived in Northern NJ I used too actually but now I live in central NJ. 

I went to Kessler who treated Reeves, UMDNJ, JFK Hospital where my

best friend went when she had her accident and thought highly of them all of

which would not take me on as a patient.  Traveling far can be a problem since I

work full time and even more cause I am short staffed.  Also I have a 9 year old

daughter so my time is very limited.

Even though I am quite active and only started using a cane for balance I was

told by the MDA Neurologist I was the worse known case of CMT he has ever seen

which really surprises me since he was an older doctor.

Andy

[Guest guest]

geri

wont the mda help you??? Or could you call a college to see if you could be a

help for their students??? Or calling a pt place and asking if they could donate

a couple week? Or the hosiptal to donate for their students??

tina

cmt1a

michigan

[Guest guest]

Tina

MDA is three hours away.so far they haven't helped with PT..went a few

times. Co. pay $35. a visit.tat allot on money for me even if it were once a

wk!

I never thought of student, hospital.exc.

Thanks Geri

geri

wont the mda help you??? Or could you call a college to see if you could be

a help for their students??? Or calling a pt place and asking if they could

donate a couple week? Or the hosiptal to donate for their students??

tina

cmt1a

michigan

[Guest guest]

geri

i was wonder what state you live in. my mother in law has therapy right at her

house.

she is on medi care or cade i not sure which one. also call 1 800 ask a nurse.

also the senor center may be able to help you. it is worth a try.

my phy therapy guy gave me things to do at home. i can do them right on bed.

if you want to know what he gave me to do let me know.

tina

cmt1a

michigan

[Guest guest]

I live in Minnesota.....and yes tell me about you home exercise program.

Thanks Geri

i was wonder what state you live in. my mother in law has therapy right at

her house.

she is on medi care or cade i not sure which one. also call 1 800 ask a

nurse.

also the senor center may be able to help you. it is worth a try.

my phy therapy guy gave me things to do at home. i can do them right on bed.

if you want to know what he gave me to do let me know.

tina

cmt1a

michigan

[Guest guest]

geri,

i have pillows under my head. do 5 of each, do as many set.

rest in between.

first i lay in the bed, bend my knees with my feet on the bed.

then i lift my feet off the bed. like i was walking.

then same postion, feet on bed knees bent.

then left my pelvic no hips off the bed. hold for 5 to 10 seconds.

then same postion.

then a sit up arms out. not really all the way up as far as you can go.

then in a chair, feet on floor if they reach, lift legs again, like walking.

bending at the knee.

then in a chair,

lift legs staight out. then lower.

then i hang on to a table

and try to sit down like in a chair. make believe sit.

then he has give me a piece of that band aid material.

i have it tied to a chair leg.

i put my foot in have it around my ankle area and move my leg back and forward.

i am sitting doing this.

i have the band aid material around a pole, lose ends

i hang on to it with my facing the pole and just going back and forward, again

sitting.

then with my back to the pole.

i do these 2 times a day

i dont know if you can do all of these, but maybe some.

like i said i do them at home. some days i cant.

tina

cmt1a

michigan

From: hotwheels@...

Date: Sun, 23 Aug 2009 20:11:32 -0500

Subject: Re: physical therapy

I live in Minnesota.....and yes tell me about you home exercise program.

Thanks Geri

i was wonder what state you live in. my mother in law has therapy right at

her house.

she is on medi care or cade i not sure which one. also call 1 800 ask a

nurse.

also the senor center may be able to help you. it is worth a try.

my phy therapy guy gave me things to do at home. i can do them right on bed.

if you want to know what he gave me to do let me know.

tina

cmt1a

michigan

[Guest guest]

Thanks Tina,

I'll try some of these.

Geri

[Guest guest]

Jackie,

Can you name or describe some of the exercises that you do at P.T.? For those of

us who don't have insurance that covers it, that would be so helpful! I try to

devise my own exercises, but, I could always use some guidance or ideas

about what might help the CMT in cases there's something that I am missing. 

Dawn

[Guest guest]

One of the best and easiest is to stretch the Achilles tendon. Stand in

front of a wall about a foot away. Put your arms in front of you on the

wall. Step back with one foot and push down your heal to stretch. Hold for

about 20 seconds and repeat 3 times with both feet, one at a time. The other

similar is to stand on a stair, hold the railing and hang your heels off the

step and push down.

The other exercises my son does are wall sits, like

sitting in a chair but leaning against the wall with no chair. Leg raises

are great for the hips. Lie on your back, side and stomach and lift legs one

at a time for 20 count 3x each. So while laying on back lift right leg 20

times straight up as high as you can and down again. Then do left leg etc.

then roll onto side and lift leg up etc then move to stomach. Make sense?

Strengthening ankles with a stretchy band is a good one and putting a kick

ball between knees and squeezing is a good hip one. Just some suggestions.

I can give you more details if needed.

Lori

[Guest guest]

I found that using a slant board works better than stair stretching for the

achilles tendon.  About a 20 degree slant is good for me.  I asked the hardware

store to cut the pieces for me and they actually built me one after I told them

what it was for!

Curtis

[Guest guest]

Curtis,

I have actually been bugging my husband to build this for my son with no luck. I

will try the hardware store.

Lori

>I found that using a slant board works better than stair stretching for the

achilles tendon.<

[Guest guest]

Ed,

Consider my age now 57. I have had numerous " sessions " of physical therapy since

my childhood diagnosis. All included balance and strength work. All during my

teens I had PT at my home 3 days a week. In between times I had to practice the

exercises like I was shown. After falling off a horse, in my 20's, I had more PT

to establish balance.

I have had a very active life, swimming, riding, biking, hiking, dog walking,

aerobics, pilates, ski conditioning,etc.

Fast forward to adulthood, I had PT after a car accident and concussion - about

3 months 2X a week, again for muscles and balance. And inbetween exercises at

home.

After back surgery in 2002, I had more PT to get me up walking and strengthen

inner core muscles. I think the PT was 3 times a week for 3 months. That proved

very beneficial as it started me on Aquatics and some of the exercises I still

do now are for muscle strength and balance.

After rotator cuff surgery, I had 4 months of PT, which had a huge balance

component, since during the healing, I was using my left body more to

compenstate for the recovering right shoulder. I had this 2X a week for 4

months. It seemed like a lifetime, and this one was really painful for the first

2 months. Of course, everytime the PT would push too hard, I'd scream " Ouch " -

of course it hurt I was told, that means progress.

So I'd say at 75 (which is still fairly young really) stick with it, but be sure

to talk to your PT about your concerns, feeling pain, etc. Sometimes PTs push on

purpose who may not know CMT, other who know, may be able to make modification.

Alot of PT is also to keep muscles relaxed and used as exercise to keep joints

working properly, not to mention blood flow, keep cholesterol low, etc. Just my

5 cents worth.

Gretchen

[Guest guest]

I also take a nap every day from 1-4 pm. I feel most comfortable laying on my

stomach. I try my best to extend my quality of life as long as I can.

-wheels