Re: Improve Balance and Exercises.

[Guest guest]

June here......Joana, I share all of your CMT symptoms with you.......one of

my first indications, besides falling, was not being able to lift my heels

off floor (no reaching upper shelves in kitchen), my balance is awful and

yes, I use a cane or rollerator when I walk outside the house because if I

stop I teeter and start to fall unless I have something steady to hold

onto. My feet feel numb but also very heavy and it is like I have a tight

sock on all the time, even tho my feet are bare sometimes. And, I make the

" slapping " sound with my feet when I walk...also one of my first indications

because I remembered my Dad's gait in his later years. I am 76 and

diagnosed in my mid sixties....but like all of us CMTrs with late onset, I

had lots of problems when I was young but everyone, including me, just

thought I was a " big klutz " . Sorry I don't have any suggestions for you

except to definitely use a cane or rollerator when walking.

On Sun, Jan 2, 2011 at 2:24 AM, jponsara <jponsara@...> wrote:

>

>

> Happy New Year Gretchen and all friends.

> All the best wishes to you all ;-)

>

> Sorry, I have been way for quite sometime.

>

> I have being feeling quite upset because I can not lift my heels

> from the floor anymore and my balance is very bad.

>

> While standing I feel weird because my body can not stay still

> if someone look at me may think a I am drank, oh dear.

> my calves muscle are quite weak now and I wonder if there is any

> kind of exercises to help the balance or make the calves muscles

> getting a bit stonger?

>

> When I walk feels like an elephant or a duck walking, make a lot of noise

> with the impact of the shoes on the floor (like claping) because the

> walking´s moviment is not correct, the foot is also very weak. I have double

> joints and sometimes I lose the feeling of my foot, feels like num. very odd

> all this. sorry because it is hard to put in words.

>

> When I am walking in the street I feel afraid to fall down if I stop

> walking sudenly. the body can not stay still anymore so I need to hold into

> something at the traphic light when need to cross the road.

> I find hard to explaing this awfull feeling now.

>

> I would like to thank you for any sugestion.

> Thank you all

> Ps: sorry about my english.

>

> Best Wishes

> Joana

>

>

>

[Guest guest]

----- I think AFOs would do wonders for you......

Geri.

Happy New Year Gretchen and all friends.

All the best wishes to you all ;-)

Sorry, I have been way for quite sometime.

I have being feeling quite upset because I can not lift my heels

from the floor anymore and my balance is very bad.

While standing I feel weird because my body can not stay still

if someone look at me may think a I am drank, oh dear.

my calves muscle are quite weak now and I wonder if there is any

kind of exercises to help the balance or make the calves muscles

getting a bit stonger?

When I walk feels like an elephant or a duck walking, make a lot of noise with

the impact of the shoes on the floor (like claping) because the walking´s

moviment is not correct, the foot is also very weak. I have double joints and

sometimes I lose the feeling of my foot, feels like num. very odd all this.

sorry because it is hard to put in words.

When I am walking in the street I feel afraid to fall down if I stop walking

sudenly. the body can not stay still anymore so I need to hold into something at

the traphic light when need to cross the road.

I find hard to explaing this awfull feeling now.

I would like to thank you for any sugestion.

Thank you all

Ps: sorry about my english.

Best Wishes

Joana

[Guest guest]

Hi Joana: A lot of us have been through what you are going through

now. I had to touch something to be able to stand still when I was

only six years old. I used to stand with my knees bent so I wouldn't

have to move all the time. I don't know how old you are but the answer

could be in better more, supportive high top shoes or ankle foot

orthoses shoes that support you better and a lightweight fold up cane

that you can use when you are walking and then put away when you are

not. It will help you stand still, help you balance, let you stand at

road light crossings and when you are waiting in line without

constantly having to move. No one wants to use a cane but it is far

better than having to look for something to touch every time you stop.

Hope this helps.

C.

On 2-Jan-11, at 2:24 AM, jponsara wrote:

> Happy New Year Gretchen and all friends.

> All the best wishes to you all ;-)

>

> Sorry, I have been way for quite sometime.

>

> I have being feeling quite upset because I can not lift my heels

> from the floor anymore and my balance is very bad.

>

> While standing I feel weird because my body can not stay still

> if someone look at me may think a I am drank, oh dear.

> my calves muscle are quite weak now and I wonder if there is any

> kind of exercises to help the balance or make the calves muscles

> getting a bit stonger?

>

> When I walk feels like an elephant or a duck walking, make a lot of

> noise with the impact of the shoes on the floor (like claping)

> because the walking´s moviment is not correct, the foot is also very

> weak. I have double joints and sometimes I lose the feeling of my

> foot, feels like num. very odd all this. sorry because it is hard to

> put in words.

>

> When I am walking in the street I feel afraid to fall down if I stop

> walking sudenly. the body can not stay still anymore so I need to

> hold into something at the traphic light when need to cross the road.

> I find hard to explaing this awfull feeling now.

>

> I would like to thank you for any sugestion.

> Thank you all

> Ps: sorry about my english.

>

> Best Wishes

> Joana

>

>

>

[Guest guest]

Good for you! Must admit that I know I need a cane,however,my husband has

Parkinson's disease and we would be a two cane couple! Can;t quite do

that yet as I often have to help him in many ways. Hope they find something

soon for CMT 2!

P. from NYS

In a message dated 1/2/2011 8:02:16 P.M. Eastern Standard Time,

lynnanicholas@... writes:

You sound a great deal like my sister... she got AFOs and it has been

REMARKABLE to see the transformation. She is very shaky without them, very

unstable, can't walk very well. While wearing them, she chases after her young

daughter, does the zoo, and is a dynamo.

I am now a wheelchair user, but I remember how much stability (safety!)

and enhanced mobility I had from using a cane and then forearm crutches as my

CMT worsened. It was tough for me to get over my resistance to using aids

(fearing the stigma), but I always find people are MUCH more accepting than

I think they will be, and my fears have been like finding that the

monsters under the bed are really friendly.

All my Best,

Lynna

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

You sound a great deal like my sister... she got AFOs and it has been REMARKABLE

to see the transformation. She is very shaky without them, very unstable, can't

walk very well. While wearing them, she chases after her young daughter, does

the zoo, and is a dynamo.

I am now a wheelchair user, but I remember how much stability (safety!) and

enhanced mobility I had from using a cane and then forearm crutches as my CMT

worsened. It was tough for me to get over my resistance to using aids (fearing

the stigma), but I always find people are MUCH more accepting than I think they

will be, and my fears have been like finding that the monsters under the bed are

really friendly.

All my Best,

Lynna

[Guest guest]

,

The irony is that using a cane would, in all likelihood, INCREASE your ability

to provide care and would enhance your own mobility, stamina, safety,

efficiency. Hey, if you could carry it off, a two cane couple could be quite

jaunty. Like, if you could do it with a bit of swagger and justified pride in

being able to do something that most people resist (using a cane, that is, even

when it would be beneficial) and having a little self-satisfied pride that you

are smarter than them!

All my Best,

Lynna

[Guest guest]

Joana,

Welcome. I'm sorry you are having these symptoms, but you seem to be going

through a classic degradation period.

I understand fearing people may think you are drunk, and also of swaying to keep

balance.

You are describing how it feels to walk with CMT quite well.

Fear of falling is also shared. I understand this and have lived with it for my

whole life.

I hope that my sharing, and telling you you have done a terrific job describing

your experience helps you. ly I wish I could give you a hug.

Try yoga, and I recommend " yoga tuneup. "

Stretching and strengthening at a slow pace are the best things we can do. But

we -can- strengthen. And you can see yourself get better, at least to a point.

Stay with us here, and we'll help all we can.

Yours,

[Guest guest]

Hello Joanna,

I'm 75 now and steadily declining in balance capacity. A year ago I spent

$2-3,000 on strengthening and balance physical therapy and had only

minimal improvement during the sessions until I sensed that I was

actually getting worse. I believe the net effect of the PT was a step

down in my capabilities to a small degree. It definitely was not an

improvement and I went into it because my GP wanted to try it out.

It is my further belief that the problem is not so much as weakened

muscle power, but a two fold result of deteriorating muscle reactions

coupled with a loss of sensation as to where my limbs are and seriously

delayed feedback as to position and movement of the limbs. The only thing

that prevents falling down frequently is some residual ability to grab

with my hands quickly enough to prevent falling. At the same time,

careful planning of movements keeps hand holds ready and near. When I

rise from a sitting position, I try to touch something solid and

stationary for 5-10 seconds while my body gets used to the new position.

Often I will lean on something or back into the chair seat so that my

calves are in contact with the edge of the seat while standing and this

helps. Ladders and looking upward are almost totally out for me now. I'm

not using a cane yet but that time is coming. Double hand rails on the

stairs help. To carry a laundry basket up and down stairs, I now put it

on a step and look at my feet backwards between my legs to step down 2 or

3 steps then move the basket 2 or 3 steps then repeating the maneuver

until the whole flight of stairs is accomplished going either up or down.

I hope this helps,

EdM from NH

[Guest guest]

Hi Joana

Are you still in London? Have you considered asking your GP for a referral to a

neuro-physiotherapist? They would assess your capabilites and suggest relevant

physio and exercises to help strengthen your muscles.

Assessments are usually done in tandem with orthotists who may suggests

orthotics, insoles or other aids to help you keep mobile and also occupational

therapists to assess your abilities in your day to day life.

Apologies if you've been down this road before but it never hurts to ask - and

contrary to media opinion the NHS is still live, kicking and offering services.

Regards

Fiona in Glasgow

[Guest guest]

Joanna,

The slapping noise is due to your drop foot which is probably getting weaker.

Not standing on my heels was one of the first symptoms I had to let me know

something was not right.

As far as the part about your body moving, that is due to the balance issues.

Your body is naturally adjusting by keeping in motion because it is unable to

stand still on its own.

I can only stand still for under 1 second. This may be a good time for you to

look into bracing of the feet and/or legs or an AFO. This will stop the  foot

slapping and will definately improve the balance. Using a cane is also a great

option if you do not want  to start with bracing. A walker is even better

because it has greater support and you can sit when you feel tired.

Just remember, you are not alone. These are classic CMT symptoms.

Jackie

[Guest guest]

I agree, I used one cane and it helped, then two canes to keep me from

falling, then a walker, then I went to a scooter when I started

falling on the walker. Every one of those devices helped keep me

functioning and I'm still very active on my scooter(s).

The phrase " confined to a wheelchair " is crazy yet the media still

uses it. I go after them at every turn. A wheelchair, just as a cane,

crutches or walker, is is a mobility device that increases our

mobility, our ability to get around and to be socially active. Rather

than confine it liberates.

C.

[Guest guest]

Sometimes physio and exercise can make us worse. That's been my

experience. If the muscles don't improve after a certain length of

time, they aren't strengthening. If you keep pushing CMT affected

muscles (and nerve) you can really make yourself worse. Something like

Tai Chi helps strengthen core muscles and I you can do it sitting down.

I may be too far advanced to comment on young muscles but please, be

careful. I know people who have truly made themselves worse by pushing

it.

Crabtree

On 3-Jan-11, at 7:13 AM, feeby101 wrote:

>

>

> Hi Joana

>

> Are you still in London? Have you considered asking your GP for a

> referral to a neuro-physiotherapist? They would assess your

> capabilites and suggest relevant physio and exercises to help

> strengthen your muscles.

>

> Assessments are usually done in tandem with orthotists who may

> suggests orthotics, insoles or other aids to help you keep mobile

> and also occupational therapists to assess your abilities in your

> day to day life.

>

> Apologies if you've been down this road before but it never hurts to

> ask - and contrary to media opinion the NHS is still live, kicking

> and offering services.

>

> Regards

>

> Fiona in Glasgow

>

>

>

[Guest guest]

Hi

My advice to Joana is because I've had direct experience of physio and whats on

offer in the UK.

In November I had a truly wretched experience of an overactive thyroid - from

having few problems with my arms and hands and the use of a walker and chair to

walk I became practically bed ridden, unable to wash and dress myself, even

cleaning my teeth was a hardship. The meds for the thyroid solved most of the

problems but the physio has helped me rebuild all the muscle and mobility I'd

lost as a result of the thyroid problems.

My physio is still ongoing but I'm now back on my feet, I'm much more stable and

we're practicing the use of crutches which is something I couldn't do before the

physio.

I agree that it mightn't work for everyone but I do believe that if you don't

try - especially where the services are on offer - then you won't ever know if

it will benefit.

regards

Fiona in Glasgow

>

> >

> >

> > Hi Joana

> >

> > Are you still in London? Have you considered asking your GP for a

> > referral to a neuro-physiotherapist? They would assess your

> > capabilites and suggest relevant physio and exercises to help

> > strengthen your muscles.

> >

> > Assessments are usually done in tandem with orthotists who may

> > suggests orthotics, insoles or other aids to help you keep mobile

> > and also occupational therapists to assess your abilities in your

> > day to day life.

> >

> > Apologies if you've been down this road before but it never hurts to

> > ask - and contrary to media opinion the NHS is still live, kicking

> > and offering services.

> >

> > Regards

> >

> > Fiona in Glasgow

> >

> >

> >

>

>

>

>

[Guest guest]

EdM and Joanna,

I am 76 and also steadily declining in balance capacity and I was amazed to read

about your going down steps backwards. I have been doing that all the time now

for at least 3 years. I can still do stairs but with much diifficulty....mostly

I depend on some strength in my arms to pull me up. Have a stair lift chair on

the stairs between first and second floor but must still navigate steps to

basement to do laundry, litter box etc.

And,yes, I also have to hold onto something solid after first getting out of a

chair (again, with arm strength)....I have to stand about 15 seconds until my

body will move without a wobble. Haven't tried PT yet but my G|P has asked me to

consider it..... I have CMT1B, do you know what kind you have?

June

>

[Guest guest]

Dear June

Happy New Year.

I would like to thank you so much for your sharing.

We have to keep going. I am trying my best here too.

All the best wishes and God Bless You.

Kind Regards

Joana

>

> >

> >

> > Happy New Year Gretchen and all friends.

> > All the best wishes to you all ;-)

> >

> > Sorry, I have been way for quite sometime.

> >

> > I have being feeling quite upset because I can not lift my heels

> > from the floor anymore and my balance is very bad.

> >

> > While standing I feel weird because my body can not stay still

> > if someone look at me may think a I am drank, oh dear.

> > my calves muscle are quite weak now and I wonder if there is any

> > kind of exercises to help the balance or make the calves muscles

> > getting a bit stonger?

> >

> > When I walk feels like an elephant or a duck walking, make a lot of noise

> > with the impact of the shoes on the floor (like claping) because the

> > walking´s moviment is not correct, the foot is also very weak. I have double

> > joints and sometimes I lose the feeling of my foot, feels like num. very odd

> > all this. sorry because it is hard to put in words.

> >

> > When I am walking in the street I feel afraid to fall down if I stop

> > walking sudenly. the body can not stay still anymore so I need to hold into

> > something at the traphic light when need to cross the road.

> > I find hard to explaing this awfull feeling now.

> >

> > I would like to thank you for any sugestion.

> > Thank you all

> > Ps: sorry about my english.

> >

> > Best Wishes

> > Joana

> >

> >

> >

>

>

>

[Guest guest]

Dear Fiona

Happy New Year.

Thank you again.

Somethimes I get so tired of this CMT... but you are right there.

I will need to go again to another neuro-physiotherapist and see

what else could try out.

Remember the time when I used to go every single day at the gym,

I was feeling much better in my self after work out on threadmil, bike, power

plate etc etc.

The weather in london is awfull and i have been trying to leave london for good.

Now I am in Brasil, feeling much better, the weather is good and my feeling is

also better.

I realy hope to live in Brasil soon.

So far a lot of anxiety but I am fighting here.

I feel sorry because I can not longer travel by bus or walk freely in the

streets like before. The roads here are not very good anyway but I do go out by

taxi and do what I can, at least here I have my family, it is a blessing.

Maybe I really got tired to visit hospitals, doctors in london & did not find

any good results, that was the reason I went to gym and did work out only with

personal trainers, but sadly I got very upset in winter months and stops

exercises.

Now I may buy a exercise bike here soon and also will do some new check ups. we

will see ;-)

I would like to thank you Fiona.

All the best wishes to you.

Have a great day out there

Joana

> >

> > >

> > >

> > > Hi Joana

> > >

> > > Are you still in London? Have you considered asking your GP for a

> > > referral to a neuro-physiotherapist? They would assess your

> > > capabilites and suggest relevant physio and exercises to help

> > > strengthen your muscles.

> > >

> > > Assessments are usually done in tandem with orthotists who may

> > > suggests orthotics, insoles or other aids to help you keep mobile

> > > and also occupational therapists to assess your abilities in your

> > > day to day life.

> > >

> > > Apologies if you've been down this road before but it never hurts to

> > > ask - and contrary to media opinion the NHS is still live, kicking

> > > and offering services.

> > >

> > > Regards

> > >

> > > Fiona in Glasgow

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

I agree with Fi, and hi Joana!

Joana, if you are still in London please ask your GP for a specific referral to

Reilly's clinic at the National Hospital for Neurology and Neurosurgery.

and her team there (the practice out of the Institute of Neurology) have a

fully integrated practice. Neurophysiotherapists, orthotists who have deep

experience working with CMT patients, occupational therapists.

When I decided to become very active again in 2007 I initiated my journey by

putting myself back into the NHS system. You need to keep appointments with

regularity otherwise the wait list gets long. The clinics at the National have

been invaluable.

Just yesterday I met with my neurophysiotherapist (although privately as this is

focused on specific sports based needs I have with a timeframe - didn't want to

wait!) and we discussed so many things that can improve my gait. She caters to

every level of CMT and neurological difficulty. Her name is Gita Rhamdarry in

case you need it.

My eyes have been opened to the huge benefits that activity - as monitored and

prescribed by a medical team - can bring. Increasingly research is showing

this.

It is not easy. It is hard to stay committed. It is tough to resist

temptations and to make sure we do not to overdo things. But I think with the

right doctors and mindset and approach, declines can be managed. In fact, when

I work with my team it is our combined objective to stave off all my decline,

and to in fact make me stronger and reverse what can be, all while having CMT.

Anyway, as I always say, I realise everyone is at a different level. My

experiences may not be for everyone.

Joana, if you are in London, do not hesitate to ask for an appointment at

Reilly's clinic. You will find people genuinely interested in helping with CMT

management, as well as the support to help you to decide the right approach for

you - as a team with the clinic and you as patient first.

And yes Fi I totally agree - for me the NHS works, and works very well. I am

proud that we have access to such treatment in the UK.

All the best from London,

Donna

www.beatinglimitations.com

> >

> > >

> > >

> > > Hi Joana

> > >

> > > Are you still in London? Have you considered asking your GP for a

> > > referral to a neuro-physiotherapist? They would assess your

> > > capabilites and suggest relevant physio and exercises to help

> > > strengthen your muscles.

> > >

> > > Assessments are usually done in tandem with orthotists who may

> > > suggests orthotics, insoles or other aids to help you keep mobile

> > > and also occupational therapists to assess your abilities in your

> > > day to day life.

> > >

> > > Apologies if you've been down this road before but it never hurts to

> > > ask - and contrary to media opinion the NHS is still live, kicking

> > > and offering services.

> > >

> > > Regards

> > >

> > > Fiona in Glasgow

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Hello. I'm not sure what is but I have peripheral neuropathy and drop

foot in both feet.

I find jumping on a 40 " trampoline to be the best for improving my balance and

control.

It is tough and sometimes I start with only two minutes at a time but it

improves rapidly as does my balance and coordination.

I use a board across a facing between the living room and dining room and the

trampolin underneath.

I hardly ever fall but use a cane when leaving the house or walking on rough

ground.

I hope those of you than can will try this and let us all know how well it works

for you.

My coodination would be terrible if I didn't use this - even though I walk on

our treadmill - sometimes up to two miles - it doesnt' help my coordination and

balance.

The trampoline does.

Best Wishes.

Hansen

>

>

>

[Guest guest]

Hi Joana

I hope the weather where you are is so much better than here in the UK (although

the sun is out today...!) Good weather may not help physically but it can do so

much emotionally so fingers crossed for you.

take care

Fiona in Glasgow

[Guest guest]

Thanks for the kind words. May have to give it a try soon.

from NYS

In a message dated 1/2/2011 10:01:23 P.M. Eastern Standard Time,

lynnanicholas@... writes:

,

The irony is that using a cane would, in all likelihood, INCREASE your

ability to provide care and would enhance your own mobility, stamina, safety,

efficiency. Hey, if you could carry it off, a two cane couple could be

quite jaunty. Like, if you could do it with a bit of swagger and justified

pride in being able to do something that most people resist (using a cane, that

is, even when it would be beneficial) and having a little self-satisfied

pride that you are smarter than them!

All my Best,

Lynna

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]