Re: Live in the Moment

[Guest guest]

-

Well said!!!

I now have gone back to remembering my father's actions and behaviors that I now

know where symptoms of the disease that I learned I have just one and a half

years ago. Now I go to my family reunions and learn that my aunts and cousins

are suffering as I do with the symptoms.

Keep on fighting and educating others.

-wheels

[Guest guest]

Thank you for this honest and insightful posting, . I have CMT but do not

know the type. the tests I've had have been negative.  However, I've only been

tested for two types. I now use a wheelchair and am having a hard time coping

with the progression of weakness in hands and legs. I have had symptoms since

childhood, but have always managed with a good attitude.  It's harder now. Do

you know of a CMT research and treatment center, such as Baylor, in the

Boston area.  If not, I would be willing to travel to one in another area.

Thanks for the group.  Lois

From: <rgmachot@...>

Subject: Live in the Moment

Date: Friday, April 30, 2010, 10:17 PM

 

A year and a half ago a multitude of confounding medical and physical

issues that had plagued me for half of my life were given a name, a diagnosis, a

condition, defined as a disease process. As relieved as I was to know that

there was indeed something going on in my body that was part of an organized

assault on my nervous system, little did I realize that a year and a half later

I am not much closer to accepting the facts as they are.

I had unknowingly watched the degenerative processes of CMT subdue my

grandmother, uncle and father. As common as this neuropathy apparently is,

particularly in the southern Wisconsin area, no practioner(s) involved in the

care of any of us suggested or pondered aloud a hereditary neuropathic process

as the condition that was affecting us.

As a part of I get daily postings that I find variably interesting

relative to their applicability to my condition and situation. Ultimately, it

would seem that for as many of us as there are, we all have varying degrees of

issues, impact, limitations, and social/familial/ medical/rehab support systems

in place. I read pieces of my story in many of the posts here. I feel your pain

and suffer your same physical and emotional hurdles.

But other than my father, whose path I feel I am following similarly 40 years

behind him, it would seem that for such a prevalent disease, we are all at least

mildly different in our presentation. Obviously, there are numerous strains of

the disease.

Also, I would suggest that physiologically and anatomically we all have a

similar basic process that is bringing us down, but the way each of us lives

seems to bring on different associated issues that make us present with

different issues. Levels of activity and injury related to balance and tissue

weaknesses create varied presentation and ability to cope physically.

CMT does not, to my knowledge, affect the tissues/nerves of the shoulder, but my

father has debilitating shoulder issues that I think are caused by a) the

over-use of this joint as the shoulders work harder to make up for deficiencies

in the extremities, and the jarring impact of numerous falls due to balance

and weakness issues. I am sure there are many similar examples of anatomical

troubles that are secondary to the primary disease that is CMT.

The complexity and variability of CMT, compounded by the fact that it is not

well know by the general public (unlike MS or MD) makes it ridiculous to try to

explain to most who inquire. I broke my foot a year ago, so most of my

community and co-workers saw an obvious injury and treatment for that expended

period of recovery. Since then I have had a more pronounced ataxia that most

associate with that known and obvious injury.

Of course there are many inquiries of varied levels of genuine interest, but I

find that there are very few that I can even begin to explain the complex reason

for my awkward gait. And when I do take the time to explain that I have CMT,

what it is and where it is taking me, I frequently find that it is so much more

than the questioner was expecting that very few people really comprehend what I

am telling them.

Again, my father is the only person that I really share issues and emotions

with, because he is really the only one that gets what I am talking about. For

that I am very grateful. Ironic that the source of my ailment is my greatest

medicine. Of course I say medicine metaphorically since there is no pill to

make me whole.

What my point is here, I am not sure. I am frustrated by this ailment every

waking hour of every day. My hobbies, my work, my family life - all have been

affected by CMT. I am trying to find a new perspective that allows me to

appreciate what I have and not obsess over what I have lost. If I woke up

tomorrow and found out I had ALS, I would beg to return to the CMT that I

otherwise despise.

I am not dead; I will not lie down and I will not go quietly. A recent

exploration into the world of Buddhist philosophy has begun to help me to let go

of some of my frustration and depression. The four noble truths of Buddhism:

The Four Noble Truths

1. Life means suffering, 2. The origin of suffering is attachment, 3. The

cessation of suffering is attainable, 4. The path to the cessation of suffering.

My ability to comprehend and apply these truths is limited and situational, but

it is my hope that further application, study and meditation will allow me to

cease my attachments and thus my suffering, and live in every moment as a

blessed one. If any of this rant rings true to you I would encourage your

exploration of these truths. Likewise, if you have found a way to live

blissfully beyond your limitations I am an interested audience. I could blather

on but my hands are tired and the Brewers are coming on.

[Guest guest]

Hi ,

You've expressed your feelings and your emotional journey very well.  Thank

you for sharing.

I can relate to much of what you are saying.  Like you, my diagnosis came

late.  Many of my current problems and early degeneration may have been

avoided if my CMT would have been diagnosed and treated appropriately from

childhood. 

Recently, my hairdresser was asking me to explain how I was diagnosed.  When I

did, she said, 'Wow, that must be very frustrating!'  My response was, 'No, not

really.  It is, what it is.'  It sounds cliche, but it's how I feel.  I am

completely at peac with it.

Like you, I was upset about it initially and very frustrated,

but after working through the grieving process, I choose not to allow myself

to remain in a constant state of frustration over these things that I cannot

change for two important reasons.  First, being frustrated drains me of the

little energy reserves I have and easily puts me in bed, so it's clearly not

good for my health.  In addition, I find it's a selfish mindset that blocks

my ability to focus on other people, bringing joy to their lives, and finding

ways to keep my own life meaningful and relevant. 

We are all very different though, in how we cope.  Our genetic makeup,

childhood upbringing, and role models can all make a huge difference in our

ability to find successful coping strategies in adulthood.  I'm so glad you

found something that works for you.  Being frustrated every day is harmful

to all humans, but even more so when someone has an underlying disease, like we

do.  I'm glad you found a way to find peace in your life.  It's a huge step,

one to be celebrated.  Congrats!  And, I hope it opens up new opportunities

for joy in your life.

 

________________________________

From: <rgmachot@...>

Sent: Fri, April 30, 2010 7:17:01 PM

Subject: Live in the Moment

 

A year and a half ago a multitude of confounding medical and physical issues

that had plagued me for half of my life were given a name, a diagnosis, a

condition, defined as a disease process. As relieved as I was to know that there

was indeed something going on in my body that was part of an organized assault

on my nervous system, little did I realize that a year and a half later I am not

much closer to accepting the facts as they are.

I had unknowingly watched the degenerative processes of CMT subdue my

grandmother, uncle and father. As common as this neuropathy apparently is,

particularly in the southern Wisconsin area, no practioner(s) involved in the

care of any of us suggested or pondered aloud a hereditary neuropathic process

as the condition that was affecting us.

As a part of I get daily postings that I find variably interesting

relative to their applicability to my condition and situation. Ultimately, it

would seem that for as many of us as there are, we all have varying degrees of

issues, impact, limitations, and social/familial/ medical/rehab support systems

in place. I read pieces of my story in many of the posts here. I feel your pain

and suffer your same physical and emotional hurdles.

But other than my father, whose path I feel I am following similarly 40 years

behind him, it would seem that for such a prevalent disease, we are all at least

mildly different in our presentation. Obviously, there are numerous strains of

the disease.

Also, I would suggest that physiologically and anatomically we all have a

similar basic process that is bringing us down, but the way each of us lives

seems to bring on different associated issues that make us present with

different issues. Levels of activity and injury related to balance and tissue

weaknesses create varied presentation and ability to cope physically.

CMT does not, to my knowledge, affect the tissues/nerves of the shoulder, but my

father has debilitating shoulder issues that I think are caused by a) the

over-use of this joint as the shoulders work harder to make up for deficiencies

in the extremities, and the jarring impact of numerous falls due to balance

and weakness issues. I am sure there are many similar examples of anatomical

troubles that are secondary to the primary disease that is CMT.

The complexity and variability of CMT, compounded by the fact that it is not

well know by the general public (unlike MS or MD) makes it ridiculous to try to

explain to most who inquire. I broke my foot a year ago, so most of my community

and co-workers saw an obvious injury and treatment for that expended period of

recovery. Since then I have had a more pronounced ataxia that most associate

with that known and obvious injury.

Of course there are many inquiries of varied levels of genuine interest, but I

find that there are very few that I can even begin to explain the complex reason

for my awkward gait. And when I do take the time to explain that I have CMT,

what it is and where it is taking me, I frequently find that it is so much more

than the questioner was expecting that very few people really comprehend what I

am telling them.

Again, my father is the only person that I really share issues and emotions

with, because he is really the only one that gets what I am talking about. For

that I am very grateful. Ironic that the source of my ailment is my greatest

medicine. Of course I say medicine metaphorically since there is no pill to make

me whole.

What my point is here, I am not sure. I am frustrated by this ailment every

waking hour of every day. My hobbies, my work, my family life - all have been

affected by CMT. I am trying to find a new perspective that allows me to

appreciate what I have and not obsess over what I have lost. If I woke up

tomorrow and found out I had ALS, I would beg to return to the CMT that I

otherwise despise.

I am not dead; I will not lie down and I will not go quietly. A recent

exploration into the world of Buddhist philosophy has begun to help me to let go

of some of my frustration and depression. The four noble truths of Buddhism:

The Four Noble Truths

1. Life means suffering, 2. The origin of suffering is attachment, 3. The

cessation of suffering is attainable, 4. The path to the cessation of suffering.

My ability to comprehend and apply these truths is limited and situational, but

it is my hope that further application, study and meditation will allow me to

cease my attachments and thus my suffering, and live in every moment as a

blessed one. If any of this rant rings true to you I would encourage your

exploration of these truths. Likewise, if you have found a way to live

blissfully beyond your limitations I am an interested audience. I could blather

on but my hands are tired and the Brewers are coming on.

[Guest guest]

3 principles I live by each day: acceptance, gratitude, and service

[Guest guest]

Couldn't have said it better, . Expresses my feelings exactly.

And to Wheels........I too have gone back to remembering my dad's actions and

walking when he was older.....I too didn't get diagnosed till I was in my late

60s, about the age he was, but they didn't diagnose CMT for him, said it was

lack of B12 and pernicious anemia, both of which I have been tested and I do not

have either of those.

But have the very exact gait my Dad had, also the loss of feeling in feet and

legs, balance problems, hammertoes, high arches. I had symptoms since early

childhood but everyone just called me " clumsy " as I would fall....had perpetual

scabs on my knees as a kid and gym class was hell.......no one ever saw my

problems as something wrong, tho. I was either too dumb to learn to climb the

rope or do

cartwheels.

My dad talked about his dad and his grandfather not being able to walk when they

were in their 70s but in the early 1900s seems Dr. visits were few and far

between....them both having been coal miners they expected physical problems in

later life, if they lived that long.

Anyway, I have accepted it, but I sure do miss the long walks I used to take

with my dog tho. On the advice of my neurologist I am taking Alpha Lipoic Acid

to help with the balance and I do believe it works as the falls are few and far

between now....and I use a cane or a rollerator whenever I leave the house. Life

goes on.

June

[Guest guest]

Thank you , I feel very much like you do.

What I see, with myself, regarding acceptance of my limitations, is they change

and I have to accept them again. It's been a problem since I got diagnosed. I

felt relief as well when I got diagnosed. I thought I was so messed up, not

getting any answers, had a competely useless nerve biopsy, which with it came my

first significant visible leg atrophy.

Plus, I have tendency to be a bit of a thrill seeker, my body just won't

particpate. I am a stong believer in meditation. And it's not that easy to do.

I apply prayer (asking for guidance) and meditation (listening for the answer).

It took me 5 years to figure out how to do efffectively...It wasn't easy to shut

off my brain..and I found a great, but yet very harmful place to do it, the

tanning bed. I am always freezing in the winter and it was the only thing that

seemed to be able to warm me up, and there is alot of white noise from the fans.

I am sure I can find another place.

I am so glad you brought that up, I have not been doing it, realize while

wrinting this, its what I am lacking right now..thanks

Joann

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[Guest guest]

Hi, ,

Im a Brewer fan also. I also live in southern Wisconsin , West Allis.

[Guest guest]

I so agree with you Bonnie...

Blessings to ya!....... Geri

[Guest guest]

, if it's any consolation, you are certainly not on this path alone. Your

story is very familiar. I spent half my life trying to figure out a single

explanation for all my " oddities " .

Ironically, confounded by family members with the same oddities, telling me to

stop worrying about it, it was normal -- these things happen to them all the

time.

As I progressed in my medical education, though, it was clear that these things

are not normal. When I was diagnosed finally, it was bitter-sweet. FINALLY an

explanation, vindication, I'm not just clumsy and whimpy, there's really

something different about how my body works and it's NOT life threatening.

But then there's the depressing side. No cure, no real treatment, gradual

worsening.... ugh. I spent about a year in a bit of a funk about it. Feeling

sorry. It took at least that long to get affected family members to take it

seriously and not just blow it off.

I finally reached a point where there are a few things I know for sure:

- I'm in a much better situation than many with CMT, so far no cane, braces,

wheelchair

- I can look at my dad who is tough as nails and should be more debilitated but

is too stubborn to be (at 70) and draw inspiration to be as tough

- I'm no worse off than I was the day before I was diagnosed

- I'm still the same off-balance, accident prone person that I ever was

- This is just the way God made me and at least I have an amazing pain threshold

(since I can't feel a lot of things!)

For the most part, I think I've come to terms with it and when weird things

happen, like my entire arm going numb yesterday because I was leaning on it

funny, there is a non-scary explanation and I can move on without worrying too

much.

Holli

[Guest guest]

Amen!!!!!

in Oregon

[Guest guest]

I completely agree!!!!

Anita

[Guest guest]

Well said .