Re: My Thoughts on Living with CMT

[Guest guest]

Thanks, Donna,

I already have your blog listed in our links section in the Blogs folder. Now

and then I drop in There are blogs there by others with CMT. (If anyone here

has a Blog to put in our Links, let me know)

My thoughts on living with CMT are tailored to the emotional, relational, and

spiritual elements that make an excellent quality of life with CMT.

But I'd like to narrow my thoughts to Solitude.

Ah, the art of being alone to enjoy my solitude. None of this would have been

possible without my childhood diagnosis of Charcot Marie Tooth syndrome, my

discovery as an ENFP, or my daily spiritual maitanence. This is entirely

different that being ‘lonely’.

The art of solitude is restful, healthful, restorative and creative. I value

this as a time when I can work, think or rest without being disturbed. And I

demand this for the sake of privacy. Unlike ‘social isolation’ which may cause

lonliness, depression and dismay, self-imposed solitude (emotional solitude) is

where I go for strength.

I add to my quality of life through emergence of feeling alert and strong, calm,

energetic and happy as a result, and am more present to others needs.

As the world spins faster and faster—or maybe it just seems that way when an

email travels around the world in fractions of a second—we need a variety of

ways to manage with the resulting pressures. We need to maintain some semblance

of balance and some sense that we are steering the ship of our life. Otherwise,

we feel overloaded, overreact to minor annoyances and feel like we can never

catch up.

As far as I'm concerned, solitude, is a state of being alone without being

lonely and can lead to self-awareness.

That said, there is an important distinction to be established. There is a world

of difference between solitude and loneliness, though the two terms are often

used interchangeably. From the outside, solitude and loneliness look a lot

alike. Both are characterized by solitariness. But all resemblance ends at the

surface.

Solitude is the state of being alone without being lonely. It is a positive and

constructive state of engagement with oneself. Solitude is desirable, a state of

being alone where you provide yourself wonderful and sufficient company.

Solitude is a time that can be used for reflection, inner searching or growth or

enjoyment of some kind. Deep reading requires solitude, so does experiencing the

beauty of nature. Thinking and creativity usually do too.

Solitude suggests peacefulness stemming from a state of inner richness. It is a

means of enjoying the quiet and whatever it brings that is satisfying and from

which we draw sustenance. It is something we cultivate. Solitude is refreshing;

an opportunity to renew ourselves. In other words, it replenishes us. Solitude

interrupts uncertainty and sends it packing. (and for me that means the

uncertainty of CMT)

Loneliness is harsh, self-punishment, a deficiency state, a state of discontent

marked by a sense of estrangement, an awareness of excess aloneness.

Solitude is something you choose. Loneliness is imposed on you by others. We all

need periods of solitude, although temperamentally we probably differ in the

amount of solitude we need. Some solitude is essential; it gives us time to

explore and know ourselves. It is the necessary counterpoint to intimacy, what

allows us to have a self worthy of sharing.

Solitude gives us a chance to regain perspective. It renews us for the

challenges of life. It allows us to get (back) into the position of driving our

own lives, rather than having them run by schedules and demands from without.

Solitude restores body and mind. Loneliness depletes them.

Gretchen

[Guest guest]

Thank you Donna for sharing these thoughts. I couldn't have said it better!

-wheels

>

>

[Guest guest]

Hi Donna! I am a little exited and intrigued. Are you a walker? And do you

have CMT? I am 38. I have CMT and so do my 2 sons. I love working out. I was

a little bit out of routine but, now I am planning to start with consistency

again. CMT has never stopped me from working out. Can you tell me how twitter

works?

From: donna.dewick@...

Date: Thu, 4 Feb 2010 13:10:58 +0000

Subject: My thoughts on living with CMT

Hi,

I write a blog, each day has a different theme. Thursdays I write on random

thoughts I have. Today I wrote about how I feel alone, sometimes.

http://blog.myfitnessyear.com

Maybe you might find it of interest. Happy to have your comments, as

always.

With best wishes from London,

Donna

[Guest guest]

Donna,

Is me again. I just found your blog. I feel silly because now I have the

answers to my questions. You are awesome. I feel your pain and I understand

your occasional loneliness.....It really frustrates me when my husband or any

family member tell me " Hurry up " " Can't you walk faster? I mean! is not like

he doesn't know is not my choice. So, now I just ignore them and take my sweet

time walking, because I am the one who could get hurt if I hit the floor. At

the airport, trips and supermarket I just pretend I am walking alone.

Betania

[Guest guest]

Hello There,

I don't always have as much time as I would like given the fact that I have 5

children, however ten people in all live in my home, I homeschool and run a

childcare business. I believe or think that everyone in life has challenges that

they must meet whether it be CMT or some other thing. I believe it is how you

face the challenge and one's outlook on life that decides what one's life will

be like.

I decided to overcome and not let CMT get the best of me and conquer it all the

way. I keep going and yes I get tired and hurt on those days when we have a play

day or a movie day and I know that it is okay. I really enjoy my life and all

the people in it, and I think I love the hecticness of having many people living

with me

Thank you,

Heidi Willey-Hersey

NH mother of 5, however mother of many

[Guest guest]

Hello Heidi,

I agree that your outlook & how you deal with a disability makes

a difference in your life. Up until about 10 years ago I managed to deal with

CMT pretty well, but as my condition has gotten much worse it has become much

more difficult to maintain that positive attitude.

Until 10 yrs ago,I had my own childcare business too & was able to

take the children on outings. When my 2 children were young, I was able to do

pretty much anything I wanted to with them.

Until 3 years ago, I did all the yard work , including mowing &

maintaining many flower beds. I continued mowing while undergoing

chemotherapy even though my husband tried to get me to stop by not

buying gas for the mower & finally paying someone else to do it since he knew I

wouldn't mow if I knew he had already paid for a month ahead.

I just didn't want to give it up because I felt that if I could still do the

mowing, I was OK. Now I don't think I'll even be able to take care of my flowers

this spring. I'll try to figure out a way. It may just be planters on the patio.

All the determination in the world doesn't stop CMT. Slowly,

everything you enjoy becomes impossible to do. Now that I am in my 50's, it's

not happening so slowly anymore. I'm noticing change almost daily.

I've been taking care of my 2 yr old grandson part time & now my

daughter in on maternity leave with a 3 week old son. In 3 weeks, she

goes back to work & I'm beginning to doubt my ability to take care of

both children. I worry that she may be wondering the same thing but

doesn't want to say. I have gotten so much worse since the first one was born.

I know that soon I will have to tell my daughter I can't do it &

she will have to put them in daycare. I hate that more than anything.

I'm not able to get around without a walker anymore & my hands have

gotten so weak that holding a newborn is tricky.

I've always figured out ways to do things as I've gotten worse,

but I'm running out of solutions. I get frustrated when people who can

still do so much make it sound like it's all in your attitude. When I

started worsening so quickly, I wanted to find a neurologist that was

familiar with CMT & found that the head of the MDA clinic in my city

actually has CMT. I went to him & all the advice he gave me was to get a walking

stick & that how I felt about things would affect how I did.

He's young & not very severely affected. I thought, I could say that

too, 20 years ago when I could still do almost anything I wanted. I

didn't go back to him. A year later, I'm much worse & struggling to

accept it & have no answers to my questions about what to expect & how

soon to expect it. Doctors don't have those answers anyway.

I have always done beyond what I was capable until I'd have to

accept that I couldn't. I never was a quitter & did not let CMT control my life.

But now, no matter how much I fight it, CMT is controlling my life. It's quickly

taking every enjoyable thing from me. My husband tries to encourage me by

telling me that even if I can't take care of the grand kids anymore, I can still

be there for them.

I don't want to come across as being negative but I'm at a stage

that it's hard to keep positive. When I'm ready to give up, I figure out

something to be positive about. That's getting harder to do because I'm scared

about how quickly I'm going downhill. I'm beginning to wonder if the cancer I

was treated for 4 years ago may have returned & may be the cause of my rapid

weakening. Time will tell.

Thanks for letting me unload. I think everyone with CMT fights

against it as hard as they can until they can't fight anymore. Some

people may be fortunate enough to never be affected very severely. But

if you don't happen to be one of the fortunate ones, it's not because

you gave up.

Jan

>

[Guest guest]

Jan,

This is an excellent post. I felt the same way when I read the earlier posts

from others, but didn't have the energy to reply.

I'm a very positive and determined person and have been told so my entire life. 

While this positive, can-do attitude, enabled me to reach my full potential, it

could not prevent the disease from disabling me.

For some, however, I do believe the previous posts could be helpful.  There are

some who carry a negative perception of their own abilities due to the label of

the disease or what others have told them they are capable of achieving.  They

may never have truly tested the limits themselves, but simply accepted the low

expectations and skewed beliefs of others.  For such an individual, a positive

attitude and strong determination may produce positive results, because it may

encourage them to reach their full potential by trying things they may have

mistakenly believed they couldn't do or perhaps were afraid to try.

For those of us who have degenerated in spite of a positive attitude, we know

that sheer determination isn't enough to slow the progression of the disease or

somehow make it possible to begin doing things the body simply can no longer do.

The disease still wins.

>

[Guest guest]

Jan

That was an excellent post. You've captured how I feel. I'm going back to my

neurology team to find out if my CMT is getting worse (or whether its just my

perception) as I'm finding it harder to cope.

I feel like my world is shrinking as the number of things I can do, and more

importantly, do independantly, seems to be reducing as the months go on. My arms

and hands aren't too bad but get tired when I drive (already have hand controls)

and I cant walk the length of my building hall let alone the street. and I'm

permenantly tired. Its very demoralising and worrying and sometimes all the

Positive Mental Attitude in the whole wide world doesn't help.

That said, we dont have any choice but to keep on going.

kind regards

Fiona, Glasgow, Scotland

ps has anyone tried any homeopathic remedies? My GP has suggested Argent (Nit

Arg

[Guest guest]

Fiona and Jan,

If is not to personal, may ask you if you wear braces?

From: fi.by@...

Date: Sat, 6 Feb 2010 13:45:40 +0000

Subject: Re: My Thoughts on Living with CMT

Jan

That was an excellent post. You've captured how I feel. I'm going back to my

neurology team to find out if my CMT is getting worse (or whether its just my

perception) as I'm finding it harder to cope.

I feel like my world is shrinking as the number of things I can do, and more

importantly, do independantly, seems to be reducing as the months go on. My arms

and hands aren't too bad but get tired when I drive (already have hand controls)

and I cant walk the length of my building hall let alone the street. and I'm

permenantly tired. Its very demoralising and worrying and sometimes all the

Positive Mental Attitude in the whole wide world doesn't help.

That said, we dont have any choice but to keep on going.

kind regards

Fiona, Glasgow, Scotland

ps has anyone tried any homeopathic remedies? My GP has suggested Argent (Nit

Arg

_________________________________________________________________

Hotmail: Powerful Free email with security by Microsoft.

http://clk.atdmt.com/GBL/go/201469230/direct/01/

[Guest guest]

Fiona & Jan,

My CMT 1A was very bad right before I got braces. I slept all of the time. I

couldn't stand for more than a couple of minutes. I couldn't walk my dog

because of the pain and fatigue. The feeling of foot drop was very

uncomfortable.

Braces got me out of that devastating time. After trying a few pairs & finding

an (orthotist?) that spent the time to make a custom pair of hinged plastic AFOs

that fit and actually worked I was MUCH better.

After 18 months with braces I was able to start deep water exercise running.

This was very helpful.

I hope that this might help you as well.

Chris

[Guest guest]

I just wanted to share a bit about the root of my post. I am not a lonely

person. I do not suffer from depression. However, I do occasionally feel

alone when facing the unknown future of CMT. I think feeling alone is a lot

different than experiencing loneliness. I also think feeling alone is a lot

different than being alone. I couldn't think of a better way to describe it

than a word, and then the attempt to express my sense with a few examples

and a bit of explanation...

A lot of my blog readers are athletes. I posted a bit of my thinking of not

knowing the future in the hopes of explaining a bit to the non-CMTer on how

it is to live with a disease whose path is unknown (or at least different

for everyone). I was amazed at how the post resonated so much - with folks

who are injured, folks with diabetes, folks with depression - even with my

very religious friends, and my friends seeking to redefine aspects of their

life. I thank everyone who read the post.

I am going to use my post to reply to a few people - so bear with me.

Jan - I loved your post. It was so honest. I think what I took away from

your post is to take advantage of what you can do, and to (putting it a

different way) find things to be positive about / think to focus on around

what we can do.

Betania - Yes, I do workout. A lot. I am mildly affected but affected

nonetheless. Probably the part of me most impacted is my feet / ankles, as

I have very high arches and also loss of muscle strength in my ankles. But

that hasn't stopped me, with the supervision of my doctors, from adding

running to my working out. I haven't run in about 25 years. It is hard, I

am slow - but I love it. I really believe in keeping consistent with

working out to maintain strength for as long as I can. That is why I do

triathlon - it keeps me in the gym and keeps me motivated.

Gretchen - You said a few things in your post that resonated with me. First

is that you learned when you were a child that you had CMT, thus your

awareness and constant work with CMT has enabled you to manage your life

well. This reminded me of the question someone asked a few weeks ago -

about whether or not they should tell a child about CMT. I think your sense

of balance and your post give credence to telling children early / managing

CMT with kids early. I did not learn I had CMT until 2004. The way in

which I learned was unusual - I wanted to walk a marathon but had been

having foot pain. Since learning I have found there are many others who

learn late in live via the repeat ankle injuries that they have. I think

that the challenge of never having known a limit to suddenly managing limits

is hard for a lot of people - including me. Surely gives credence to

finding out a CMT diagnosis early and managing this directly with children.

I also liked your reflections on solitude. I am a solitude lover - I think

to love swimming you have to be at peace with your thoughts and no sounds

for long periods of time! It is my favourite part of training - the " me

time " - runners often say that running is moving meditation - I totally

agree and am always without headphones to just embrace the silence and my

own thoughts. For me the transition from peace to alone is usually from a

trigger - more often than not caused by my unforgiving office environment at

the moment. It is this refocus - getting rid of negative triggers - that I

plan to do in 2010.

Thanks for all the support and constructive comments. And I will check out

the other blog links.

Donna in London

[Guest guest]

Larry,

That's what I keep telling my mother when she tells me of the many ways she

tried to abort me. I just keep telling her there are worse things then CMT and

I'm glad to be alive..have said it more then I can count

I'm 67......yikes

Geri

[Guest guest]

I use two quotes -- one made to me, the other made to the world.

When I went to a neurologist at Wake Forest University to find why my legs

weren't working anymore, he took one look at my gait and another at my toes and

he said " Ah!, you have CMT. " Then he said the wisest, most cogent remark I have

heard about CMT:

" Well, there is good news and bad news. The good news is it won't kill you, and

the bad news is that it won't kill you. "

The public statement was made by Bill Veeck in his autobiography " Veeck, as in

Wreck " . I first read it about 40 years before I was diagnosed. I recognized it

then as a pithy statement, and now it describes how I cope. The statement was a

chapter heading:

" I'm not disabled, I'm only crippled. "

Think of all the really nasty diseases that afflict others (including my wife)

and realize that we really don't gave it that bad.

Regards.

--Larry

[Guest guest]

Hi Larry,

 

I was raised to never complain or whine about anything.  We weren't allowed

to say " I can't " unless we really tried, gave it our best, and failed anyway;

and we were certainly never allowed to complain about any physical pain unless

we were bleeding.  As a result, we learned to just 'suck it up'.

 

When significant physical problems did arise and I shared them with my mom, I

was always told a story about how someone else has it so much worse.  The

subtext of the story was to 'just deal with it and don't complain, you don't

really have it that bad'. 

 

As a result, for most of my adult life, I've had a hard time talking to anyone

about how I was feeling physically, even my doctors and my husband.  If I did

say anything, I downplayed it.  If the conversation went on for more than a few

seconds, I felt bad, like I was being a negative person and a whiner.  I've

only learned to overcome this in the last few years, thanks to the compassion

of my husband.

 

Not too long ago, I was discussing with my dad the challenges we face with

our hands.  My mom's response was to tell us the story of the Tree Man who's

terrible disease has turned his hands into immovable branches, yet he continues

to work tirelessly to support his family, so at least we don't have it that bad,

now do we?

 

Yes, after all these years, my mom gene is still fulfilling her duty to teach

me not to complain!  It's almost humorous and I love my mom dearly, knowing

without a doubt that her intentions are nothing but good...but it still

hurts, being made to feel that my struggles aren't valid simply because someone

else has it worse.

 

What I've come to understand is that hearing about the physical challenges

of someone else doesn't in any way lessen our own pain or suffering.  In

fact, just the opposite may be true.  It may make us feel shamed into silence

for even considering our own situation as worthy enough to take up

another's time and attention.  This is very unfortunate, since we are all

deserving of support and it could be dangerous if we don't get help for

something when we need it.

 

What we each experience is unique, it's real, it matters, and we should not be

shut down by others, as too unimportant in the scheme of things, at a time

when we feel the need to reach out for support.

 

In my experience, a simple, " I'm so sorry you're experiencing that " feels

a million times better than being told my feelings don't count or that I'm

apparently not as adept as coping with life's challenges as the next person and

I should take a lesson.  Being misunderstood and invalidated is painful.

 

It's wonderful to have a safe place to go, as we have on this site, to express

what we are feeling to others and know we will be greeted with empathy and

sympathy. 

 

Regarding your view that you aren't disabled, just crippled.  I'd like to share

that I don't feel crippled, just disabled.  I wouldn't want to view myself as

crippled, since this seems much worse to me than simply being disabled from

employment.  (Perhaps it's a generational or cultural difference in the use of

these terms.)

 

I'm very sorry for your wife's health challenges and I'm so sorry you are

having to experience this with her.  It must be very difficult.  I wish you

both well.

 

[Guest guest]

Larry!

I think the quote goes for everyone not just CMTers!

LIFE is like that: The good news is that it won't kill you for 70-80 years, and

the bad news is it won't kill you for 70-80 years. Life is to suffer. Do we

suffer MORE having CMT? I don't think so. We suffer for other reasons than

people with a perfect gait. But how we cope with suffering determines the

outcome of our life quality.

I read somewhere that having a serious disease like CMT can be (not alwys of

course) as painful as having a bad hairday! It's true! They asked healthy people

and they suffered just as much from a bad hairday than a person with a

neurological condition! People are like that: If they don't have a real reson to

feel bad about themselves, they MAKE UP a reason!

Maybe we should feel glad that we do have a real reason!

Beata - with CMT and a bad hairday!

[Guest guest]

I've been reading with much interest all the posts on this topic. One thing that

is very apparent is how different our experiences with CMT are due to the wide

range of symptoms we all have. I especially appreciated 's post about how

important it is to feel that it's OK to talk about being frustrated with our

condition without being made to feel that we're being selfish or ungrateful just

because there is always someone who has it worse than we do.

We all need to realize that while our problems may only be that we think our

legs are ugly or we walk a little different or we can't wear stylish shoes....

others may be dealing with being unable to walk at all. Some of us are younger &

being seen as normal is very important to us so just not being able to wear

stylish shoes is pretty devastating.

I can remember when I was young I hated dressy occasions since it was impossible

to walk in dressy shoes. My husband would try to encourage me by telling me that

no one pays attention to your shoes. I'd say, " Then why don't you wear your

jogging shoes with your suit? " I wished I could wear a sign that said, " I'm not

wearing these shoes because I think they look so great with my outfit, they

happen to be the only shoes I can walk in. "

Now I'm old...52... & can barely get around & could care less about what anyone

thinks about my not so stylish shoes. I'd be thrilled to go back 20 years when I

thought such things were so important. I guess this is a good lesson for us

that whatever stage we're in, there will come a time when we'll be wishing that

we were in as good condition as we are now.

We also need to be understanding with each other because sometimes any of us

just might be going through a rough time dealing with a new stage. My husband &

I were just discussing this tonight because I had canceled my appointment with

my oncologist & had stopped taking the Tamoxifen...this is a drug that is

supposed to greatly reduce the recurrence of breast cancer.

I was discouraged with the fact that I was getting much weaker & was having to

give up driving & soon will probably have to give up taking care of my grand

kids. I had decided that I'd rather the cancer come back & kill me than continue

to get worse. When my husband found out he insisted that I should continue any

treatment the Dr recommends & wants me to reschedule my appointment. I'm glad I

have him to share my struggles with & talk some sense in to me. I don't want to

be making decisions I may regret later while I'm struggling to adapt to the new

me.

That's what living with CMT is really all about...constantly learning to accept

the new me & trying to find new things to be positive & grateful for to replace

the things that are being taken away. Sometimes you can go years without any

noticeable worsening & coping just fine & then suddenly experience a lot of

worsening & not coping so fine for awhile. We are all in a different stage all

the time, whether we are young or just not very severely affected by CMT or old

& beginning to be more severely affected.

Sometimes we all will be feeling ungrateful or complaining or just feeling sorry

for ourselves. We get over it though & figure out a new way to make things work

if we can. If we can't then we just have to find new things to enjoy about life.

Even though I hate the thought of my grand kids having to go to a daycare, if

that's what becomes necessary I just have to tell myself that I can still be an

important part of their lives in whatever condition I'm in.

I also agree with Gretchen that we have to find things to be grateful for. I

think that will be a little easier once Spring gets here & I can get outside

even if all I can do is sit & enjoy the flowers & birds.

It's also important for those who are in the early stages of CMT to not assume

that they will end up like a relative or others that are severely affected.

Don't waste years worrying about something that may never happen to you.

Jan

[Guest guest]

Looks is not my priority as I have often said.....But I do miss walking. It

feels like it happened so fast too...braces ,cane then a w.chair......now if I

can just hang in there and keep my legs. Was never able to ride a bike,nor did I

have the money for P.T. I know what poor was and still do! Nor could I afford to

go or have a pool, but did exercise at home and did alot of walking. Got to say

I don't think the exercise mattered...My CMT got worse any way. My hands are bad

too, so is my hearing and breathing.

I get angry when people act like I'm mentally disabled, had that all my life

from narrow minded people even when I was not in a wheelchair. It is a pet peeve

of mine!! I have trouble with shallow people.

When I was very young teen, I used to worry about what my shoes looked like. Now

I have no shoes and glad I still have legs and feet.!

Enjoy the moment.

Geri

[Guest guest]

Beata and Larry, you crack me up!!

From Holli with a numb foot, CMT and a very bad hair day!

[Guest guest]

Jan, your thoughts were very well put. 2 years ago I could run up a flight

of stairs, today I am in a wheelchair. Enjoy what you can for as long as

you can. I actually like my motorized wheelchair, far less tiring than

trying to drag myself around on a walker. I can't drive due to weakness,

that is probably what I miss the most.getting round on my own. But I am

pain-free which is a good thing. I enjoy life and am blessed with good

family & friends, I refuse to let this disease take over and ruin my life.

So life for me is good.

Jeanne Shimala

[Guest guest]

I too have been reading all the posts and decided to jump in. When I was 22 and

first getting diagnosed and was upset, a girlfriend said to me, well it could be

worse, it could be cancer. Yes, that is true, but at that second I was mourning

the loss of my body and needed someone to listen. Since then, I never discussed

my CMT with anyone and lived many, many years in denial and dismissing anyone's

" sympathy " .

It is extremely important to listen to people when they have a complaint. This

may be their only complaint in 20 years and many times we just need to be able

to get it out of our hearts and heads and out into the open.

I too used to be angry because my legs were skinny, or I couldn't wear heels or

the cute shoes I saw someone in. Now, my big wish would be to be able to walk

outside in flipflops and not have to waste 5 minutes putting my braces on. For

those of us that have severe cases of CMT, it may seem like we are complaining,

but actually we are just mourning the things we used to be able to do and scared

of what is next.

At this point, I am 48, any furthur weakness could be the one that takes me from

being independent to total dependency and that in itself can be scary. My hands

are affected now, so that causes me to have to rethink a lot of what I do in my

daily life.

Jan, you are right. This disease at this point in my life is about constantly

adapting. I no longer can get up from a chair but have to turn around and use my

arms to get me up. My lift is broken in my car which means I cannot use my

scooter to run my errands. I have been going out and walking to do them, but

then I pay for it later when I fall from complete exhaustion.

Then I look at my contemporaries, or even people a generation older than I, and

I DO get frustrated. Most of the time I do not even think about it this

analytically, but the point is, if someone needs to vent about WHATEVER problem

they are experiencing, let them. They just may need to release it out of their

head so that they too can move on with their lives.

Attitude is a lot, but I have had a great and positive attitude from day one and

it has not stopped the amount of deterioration in my body. The one thing a great

attitude can do is assure that you will have people that enjoy spending time

with you and get you to concentrate harder on qualities you may not realize you

have.

Jackie

[Guest guest]

Jackie,

Thank you for sharing your thoughts.  You are going through some difficult

times.  Please continue to keep us updated as to how you are doing.

Is there anything the group can do to help you figure out a way to get your lift

repaired or replaced?  If so, please post.

I'm so sorry for your struggles and I agree with you that wonderfully caring

friends can make a huge difference in our lives and can help us to stay positive

and feel better about ourselves.  I experience the same and am grateful for it.

Ja

[Guest guest]

Jan,

I am awful with instant messaging thing & I have a 22 month old who will either

pull me off the computer or type along. I am signed in for days at a time.

I wanted to say that I am very sorry about your current situation with cancer.

I hope that you will beat it and regain energy when the whole thing is over.

My son had a play date for the first time today. What struck me about the 4

yr.old & the 2 1/2 yr. was how emotionally and mentally developed they are.

They are typically in daycare through the work week.

My mother has CMT in addition to other health issues, actually both of my

parents are managing debilitating illness. They are amazing grandparents

because of the love that they bestow on Nick. They can not watch him in the way

that many grandparents watch children. What they share is more important.

I am very sorry for you during this time. I hope that you will feel strong and

feel lots of support from a family that you have been supporting.

Chris

[Guest guest]

Oh Jan, it's ok to unload for sure.  I get frustrated too.  I just picked myself

up from the kitchen floor, thank God I don't break any bones falling and I do

fall alot.  Balance issue big time.  We all try to stay positive and some days

it's hard.  Keep the faith and remember someone is always fighting a worse

battle.. Take care,and I'm sure I'll feel the effects of my fall to tomorrow. 

Let's see this is this is the third time this year that I have fallen.  Glad I

wasn't working.  I hate to fall at work.

Elaine

>

[Guest guest]

,

Thanks for your concern, but actually I am doing great. My lift got repaired,

just needed to wait for a new part to be ordered. I still am having a dilemma

with braces, but I know I will figure it out. Just found someone I graduated

from high school with who specializes in peripheral neuropathy (from facebook!)

and lives only 1 hour from me and told me he would love to see me in his office,

so that is a positive thing to have someone who really knows CMT and will see me

as an individual rather than a research tool!

I really was posting to explain that this disease requires flexibility and when

life throws you lemons, you try to make lemondade. But more importantly, when

CMT causes additional weakness or hardship, it is OK to feel down, sad or

whatever one feels and that does not mean that you are not positive or grateful,

but just going through an adjustment period. Some may take only hours, others

may take months.

I do experience gratitude everyday and maybe CMT has made me much more aware of

being grateful than those that do not have it. I cherish the little things I can

do and I definately cherish the people in my life.

Have a great day,

Jackie