January Newsletter Vol. 2 No. 1

[Guest guest]

Perspectives

January 2002

Vol. 2, Issue 10.

In This Issue:

1) Ships Ahoy! My Travel Career - by Ruth C.

2) Laser Tag My Way - by M.

3) Hope for Awareness - by Libby B.

4) A Doctor's Hope - by Paolo Vinci, M.D.

5) Ninety Years with CMT - by Bea S.

6) Sandals in January for This Traveling Man - by Bob D.

7) Cabo's Travel Horizons - by Terry L.

8) Patric's Wish and Swedish Hope - by Rose-Marie I.

1) Ships Ahoy! My Travel Career by Ruth C.

My traveling days began in 1965 when a college roommate and I joined a

group for an adventure in Europe. At that time I had been living with

evident symptoms of CMT for 22 years. My grip strength was weak and I

goose-stepped to compensate for foot drop and no working muscles in

either foot. My balance was poor, but I could manage to stand still

for several minutes. My CMT had seemed to be in remission for about 10

years. My main symptoms appeared to be " a partial paralysis " below the

elbows and below the knees. CMT was a major nuisance and inconvenience

but it did not keep me from enjoying life; it only slowed me down a

little.

I boarded my first ship in 1965, the old Queen , on it's very

last Atlantic crossing. I had a wonderful five days crossing from New

York to Cherbourg, France. I remember rocking and rolling, laughing and

holding on to the rails as I investigated and navigated the ship. I

remember sneaking onto the First Class decks and being sent back to the

Tourist deck I remember the elegant tapestries on the walls and the tea

and little cakes served at 4:00 each day. I remember being selected by

the Captain's First Mate to start a snowball dance on the gigantic oak

dance floor. I remember having my first taste of caviar. I remember

the excitement of my first big adventure and not wanting to miss a

minute of it. When we arrived in France we all piled into a bus and

for the next month we spent 12 to 15-hour days traveling through nine

countries, stopping at one or two of the major cities in each and

touring castles, museums, monuments, nightclubs, pubs, canals,

factories, tulip fields….It was a " today is Tuesday, it must be Belgium "

trip.

I remember having my suitcase packed and out in the hall by 6:00 a.m.

every morning and nearly every evening arriving at a new hotel around

10:00 p.m. It was a grueling, tiring routine, but it was a wonderful

adventure. At the end of the month we boarded the Oriana in South

Hampton, England and cruised back across the Atlantic stopping at

Bermuda, Nassau, transiting the Panama Canal and docking in San Pedro

harbor in California. I don't remember much about that ship, as I was

exhausted from the rigorous land trip and I was unwinding and anxious to

get home. What I do remember is climbing into a top bunk for 15 nights

and managing it without much difficulty. Today I require a bottom

bunk. No more ladders for me!

Seven years went by before I could afford my next trip. This time it

was a Caribbean cruise. I love the water, the chance to visit a number

of exciting ports and the opportunity to meet lots of new people. Even

though I went alone, I never felt alone. A major bonus was that I had

my hotel, restaurant, spa, movie theater and night clubs all under one

roof! The bang that I got for my buck was a tremendous value! I only

had to unpack and pack my luggage once! I was sold on cruising!

I have a regular travel companion now. I got her hooked in 1987 and at

least once a year since you will find us cruising somewhere. November

2001 found us on a 21- day round trip from Ensenada, Mexico to the

Hawaiian Islands. We were on Royal Caribbean's Vision of The Seas

(about 3 years old). This is the longest cruise that I have taken and

the most difficult (due to shortness of breath rather than mobility),

but I loved it anyway!

There were a limited number of handicap staterooms on this ship,

assigned on a first come first served basis. There was a large

bathroom with a roll-in shower with a seat and a large bedroom with

plenty of space to move around. The trade-off was less closet space. I

have never requested one of these rooms yet, but may in the future. My

main difficulty in the standard stateroom is climbing up a step into the

bathroom as my thigh strength is nearly gone now.

On the older ships, there were lots of thresholds to step over. Then

ramps began appearing on either side of the thresholds which went from

the inside of the ship to the outside decks. I guessed that my Little

Rascal scooter would get hung up on those ramps and decided it was not

worth the logistics in trying to use it on a ship. However, on this

newer ship the step-overs have all but disappeared. Wheelchairs were

common, both electric and manual and I saw several scooters. Elevators

made all areas of the ship accessible and there were handicap bathrooms

scattered around near public areas. There were special lifts for

wheelchairs to the tender platform and several strong crewmen would lift

the chair into the lifeboats for the trip to the shore when the ship

anchored out in the harbor.

My new Virtual Gait double helix braces made walking much more

comfortable and gave a lot of support. However, I used one crutch on a

regular basis to aid with balance, and I took the second crutch folded

in my suitcase just in case it was needed if I injured myself.

I can no longer carry a tray if I choose to eat at the buffet instead of

the full service dining room , but there are always shipboard personnel

willing to help. I take most of my meals in the dining room where I am

totally pampered! When on shore, I prefer taxis to buses for sight

seeing because they are easier to get into and are generally less

expensive if shared with several people.

Many of my cruises are chosen because of price, with destination being

secondary because the ship can be a destination in itself! Using that

strategy, I can afford to go twice as often! I don't know where my next

cruise will take me, but I am happily anticipating it!

2) Laser Tag My Way - by

" I will play hard, I will play fair, I will win. " These are the words I

recited with my youth group before a game of Laser Tag one Sunday

afternoon. As I chanted these words with my friends, I couldn't help but

wonder what the game held. To me, it almost felt like a test I had to

take. A test that would show me how much I can keep up with my peers of

normal strength. It had been 2 years since I last played and since then

I had received my CMT Type 2 diagnosis and developed many problems.

I entered into the dim room, with friends on both sides of me. Everyone

took off, walking as fast as they could. With ramps and a heavy laser

gun in my hands I couldn't keep up for very long. I quickly got

separated from my friends and hid myself in a nice spot where I could

shoot without having to walk too far. I did this for most of the game,

changing locations a couple of times. It was easier than trying to find

people, I just let them come past me. Soon the game was over and even

with my minor movement, I still was tired. I played another game and

afterwards was even more tired. But it was fun!

This game showed me a lot. Like I said earlier, it was a test. It taught

me that although I can't keep up with my peers of normal strength in a

conventional way, I can come up with my own way. Others will do things

in ways I can't. But that doesn't mean I can't do them. It just means I

can do them in a different way. We can make things awesome in our own

way!

3) Hope for Awareness - by Libby

Just what is Hope? What does it mean? Hope is different to each person.

I like to be a bit philosophical at times and play with words. I find

an acronym to fit a particular word. This helps me focus better what it

means! It also gives me more ability to apply it so it becomes useful!

My acronym for HOPE is H = Humble, O = Optimism, P= Positive Persistent,

E= Eagerness. When I hope, I am humble for a result. Not expecting or

demanding but desiring it! I try to stay Optimistic for that desired

result. That creates a positive persistence, and eagerness to achieve a

certain result!

So, what is my HOPE for CMT organizations, the people and families that

CMT affects? In the year 2002, AWARENESS becomes our HOPE! We are all,

humbly optimistic, and positively pursuing more eagerly for AWARENESS!

Awareness is the key for each one of us. Education about CMT helps

non-CMT affected people understand and be better equipped to help us.

Thus, they learn our needs and what we encounter. Awareness through

education gives the non-affected more knowledge to search out new

treatments, a cure, and a better quality of life for us. It teaches

others about being able to give more support for the daily obstacles we

must overcome! With AWARENESS, our future and our HOPE become brighter!

4) A Doctor's Hope - by Paolo Vinci, M.D.

This is a short article on what I hope will happen in 2002 from a

doctor's and a CMTer's perspective, of which I am both. Let me say that

my greatest hope is always a resolute treatment that not only stops the

disease progression but also gives us our muscles back. I do know that

this hope of mine (and my mother's for me) is impossible to become

reality in 2002, although it will probably be in the future, as already

happens for other tissues, such as skin, that are regenerated.

Coming to more feasible things, I hope that researchers will work harder

and with more dedication in order to find a treatment, at least for the

severe CMT cases to stop the progression above the knees and in the

forearm.

For all cases, I hope that more awareness about CMT and its

rehabilitation management would spread all over the world in order to

allow all CMTers to maintain their own functional abilities and live a

normal and serene life.

5) Ninety Years with CMT - by Bea S.

Hello Friends. I'm Bea Silbert, born June 13, 1911, the youngest of 9

and the only one born in America. My father always " walked funny " but

no one knew why, nor did they ever try to find out. To date, in my

large family, only my daughter Joan has been diagnosed with CMT. I tell

Joan I'm sorry I passed it on to her. She always says, " It could be

something worse. "

When I was growing up I was very clumsy and often fell, resulting in a

variety of broken bones. Finally, in 1960 I started to seek medical

attention for the problem. It was a mystery to the medical profession.

But it was recommended I get braces. I thought I would have to wear the

heavy metal ones like FDR wore. I refused to get them and continued to

fall. In 1975 I got the lightweight Afoot. After that I had a whole

new life, started to work, went on trips, and enjoyed going on the bus

to Atlantic City casinos.

When my husband passed away, I moved to a senior citizen high rise

apartment. There I ran the gift shop. I was the only one in the

building of more than 200 apartment dwellers that could handle the

books and money without any mistakes. But my hands and feet started to

deteriorate. I often fell and needed help with almost everything. I used

all the services offered by the City of Philadelphia. Finally, two

years ago I realized I should not be living alone and moved to a nursing

home.

Life in the nursing home is not to my liking but I try to make the most

of it. Many residents are confused and can only speak their mother

tongue, forgetting their English. I can still understand several

languages from my youth and the staff often asks me to translate.

People are calmed when I speak to them and they can understand me.

My daughters made me a wonderful party for my 90th birthday and are

planning a real BLAST for my 100. You can see 3 pictures of me in the

CMT files and photo section. Well, I made it through 90 years with CMT

and as Joan says, " Could be worse. "

6) Sandals in January for This Traveling Man - by Bob

D.

I'll start by saying that I am a 52 year old male, a commercial banker

by occupation, and was diagnosed with CMT about 2 or 3 years ago. I

guess that I would say my symptoms are moderate as compared to some of

the postings I read on the CMT boards, but they are creeping up on me,

nonetheless, and are annoying to say the least!

So, here I sit on the East End of Long Island, New York in mid January,

about 35 degrees outside, raining, and miserable! So what did I just do?

I went out and bought a new pair of sandals to where on the beach! Yes,

I really did..............have to get ready for the next vacation trip,

you know! Bette and I

love to travel, always have, and like nothing better than to plan and

get ready for the next trip. During 2001, we were fortunate enough to be

able to spend time on the island of St. Marten (in March and November),

Washington, DC, New Orleans, and Baltimore.

I've heard that some of us folks with CMT have become worried about

traveling because of uneasiness with walking, embarrassment over

dropping something in public, or funny looking legs in a bathing suit!

My unscientific observation on these concerns is quite simple, " Hooey! "

No, I am absolutely not unsympathetic to my fellow CMT'ers whose

symptoms are worse than mine.

Yes, there are times that I come out of the water and onto the beach on

my hands and knees because this is a particularly difficult maneuver for

me. Yes, I have dropped my knife on a tile floor in an elegant

restaurant so that the noise caused heads to turn. Yes, the sidewalks in

the French Quarter of New Orleans are amongst the worst in the world and

I had to stare at my feet while walking and hold on to the buildings as

I went. And YES, I already have three trips planned for 2002!

My point here is very simple. My physical situation requires me to be

more careful than Joe Average, and many functions take me a bit longer

to accomplish. So far, I have never noticed that this is a bother to

people around me when I travel and, although annoying at times, it

doesn't bother me either. None of my CMT issues are going to get in the

way of my enjoying the trips that I look forward to all year long. What

we ALL have to remember is to go at your own pace, get out and do what

you enjoy, and LIVE!

7) Cabo's Travel Horizons- by Terry L.

Introduction: I just recently returned from a wonderful vacation spot in

Mexico - Cabo San Lucas. My only brother built a vacation/investment

house in Cabo approximately 4-5 years ago and my immediate family

(mom/dad, me/husband, brother/wife and 2 kids) went to see this

beautiful home with the lovely view. Finally! We all had a wonderful

time. I knew though that walking around would bring some challenges for

me as well as my dad.

About Dad and I: I am age 53 and my dad is age 82. We both have CMT.

I wear AFOs. My dad does not. My left foot is very strong -- the ankle

still continues to remain strong and has remained the same for many,

many years . My right foot is not good. Weird that one is good, one

very bad. I had surgery approximately 1 ½ years ago for ankle roll out

.. I definitely will need more surgery on this foot in the near future.

This surgery helped tremendously in a couple of ways: the doctors

corrected the high arch and lengthened the toes so my foot would walk

flat to the ground. I also had a tendon transfer to make the ankle

stronger (the tendons from my toes were transferred to my ankle), but

this portion of the surgery was not enough to prevent ankle roll out.

My dad has never worn AFOs. I felt walking would be so much easier for

him with them, however, this is an individual decision and his choice

was not to wear them, although walking in the past has been with

difficulty because of a high steppage gait.

My dad is a former body builder, loved to play tennis and garden. Dad

is presently using a walker because of complications with recent hip

replacement on his right leg. He just recently replaced his standard

walker with a more updated model - one that has large wheels and glides

along rather than having to pick it up every time you take a step. It

even has brakes! It was hard getting him to try something new, but he

finally did. The new walker he purchased is simply wonderful (I like it

too), it has a basket in front for carrying things and even a seat to

sit on, already built into the walker.

We finally convinced him to get it for the trip (parents can be so

stubborn). Even my nephew Zachary loved to walk with it (and he has no

problems with walking). I highly recommend it for others who need

something to use for balance when walking.

Walking: Walking in Mexico had some obstacles for my dad and myself.

The sidewalks in town are very uneven and quite narrow, so I had to be

slow and watched where I was walked. Sometimes I just held on to my

mom or husband and that gave me the support and security I needed. My

dad was more limited in where he could go with the walker, but was able

to walk around where the sidewalk areas were larger and more even and

would accommodate his walker. He was amazing though, his spirit's were

good and he made the best of every situation . His motto is never to

give up hope and deal with any situation the best way you can. I guess

we can all learn something from this.

My brothers place: It overlooks the Jack Nicklaus Signature Ocean Golf

Course, hailed as the Pebble Beach of Baja and overlooks the beautiful

Sea of Cortez. It is just breathtaking. The living room/dining room

area had windows circling the entire back of the house which gave you a

panoramic view of the outside. There is a 2-level outdoor patio which

features a Mediterranean style pool, a waterfall Jacuzzi (jealous yet?)

and a sunbathing platform area. In addition, the patio has an outdoor

firepit and B.B.Q. area. The house also has an open courtyard adjacent

to the entrance that displayed a beautiful waterfall fountain. There is

also a courtyard bedroom (my niece had this room all to herself). My

husband and I stayed in a very new beautiful hotel only 3 minutes away.

Need I say more……we lived in luxury all the way!

Pooling Info: I was a bit concerned about how I would be able to get in

and out of the pool (w/o AFOs); however, I was determined I was going to

do it. I literally hobbled over to the pool and then sat at the edge

and went down each step of the pool (sitting) - once I was in the water

I could do everything anyone else could do. Getting out of the pool was

another challenge - I made it up each step (sitting) and when I was on

the top step I just asked my husband to help me out. My dad also faced

similar challenges getting in and out of the water, but with help we

both did fine. I think everyone loves to be able to have total

independence, but sometimes this is just not possible and it is not so

terrible to ask for a little assistance. I know I felt much more

comfortable with asking for help since I was with family, however, when

the need arises, I am sure others would help you if you asked them.

The Airport Experience: At the airport my dad was escorted around in a

wheelchair and I used his walker, which helped me to get around. The

walker was a big help with luggage, we loaded all the luggage onto the

seat and just pushed it along. It had a dual purpose, great for walking

and great for carrying hand luggage while traveling. Having something

to push around gives me stability, especially when I have long distances

to walk.

I found traveling very accommodating, airport assistance wonderful.

Since my dad is unable to walk at all without the walker, airport

personnel are right there asking you if you need a wheelchair or any

other special accommodations. That was very comforting. The airline

personnel wheeled dad around in the airport, never leaving his side.

Dad was always boarded before others, so this was nice since he needed

some extra time/attention to get situated before others started to swarm

into the plane. When we arrived in Cabo, my dad was helped down the

steps going out of the plane by airline personnel. They asked me too

would I be able to walk down steps on my own. I can, with the help of

my trusty AFOs, do almost anything (except I cannot run), but running is

not important. Whenever I am feeling down (and it does happen) I can

always find someone else who has it worse than me and I am thankful for

what I do have and what I can do. My dad's life has changed

dramatically after his many hip surgeries, but still at age 82 does not

let CMT/nor the fact that he has extreme difficulty walking/using his

hands, keep him from doing things he wants to do. Both our lives have

changed as a result of CMT, however, I try very hard not to let it get

me down. I think with the help of various medical aids and most

importantly " a positive attitude " , you can do whatever you want to do in

life, even if you have CMT. Despite some difficulties, dad and I had a

wonderful time and so did the rest of the family. I definitely plan to

go back to Cabo in the distant future, I loved it. Guess I better start

saving my money!

In Summary: Traveling opens new horizons. It's wonderful seeing how

others live. Mexico is so different from here. Cabo is surrounded by

many hills and valleys. The weather was very predictable (no rain at

all……each day was nicer than the next). The foliage (palm trees, cactus

and flowering plants) was quite abundant. I saw butterflies, lizards,

all sorts of species of birds. I loved seeing the old and new areas of

Cabo. The " taste " of Mexico was everywhere…..in the housing,

restaurants/food, office buildings, shops and the people.

Traveling opens up new things for you to see and experience. Traveling

takes your mind off your problems and let's you relax and focus on other

things. We ALL need to do this. It takes some of the stress out of our

lives, even if it's just temporary. Traveling is where it's at.

Remember: Relax and enjoy life…. AND ALWAYS STAY POSITIVE!

8) Patric's Wish and Swedish Hope - by Rose-Marie I.

For myself, my family and for CMT persons all over the world my greatest

wish is that the scientists will make much progress in finding a cure

for CMT giving us all hope for a better future. My ten-year-old son was

talking to a friend the other day, a boy with mild allergic problems.

Patric asked him. 'If you got the opportunity to choose between getting

well or getting a billion of crones ($1,000,000) what would you choose?

The friend replied 'the money.' Patric choose getting well.

I know that life can be really wonderful despite CMT but sometimes it's

very tough especially for the younger ones. Just imagine the feeling you

would get if your doctor wrote to you offering a treatment, which could

work. Just a treatment, which would make the progressing

muscle-deterioration stop, wouldn't it be wonderful - what a dream?

It's easy to get scared about having CMT and all it involves. But now,

with this New Year my greatest hope and wish is better care, treatment

and research for CMT, throughout the world. I need to look forward to

the day Patric gets his wish. Let us all work together for a better

world in every respect - including a cure for CMT disease.

********************************************************************************\

*****

Next Issue: February 2002

[Guest guest]

Great newsletter.

BC

----- Original Message -----

From: Gretchen Glick <liliwigg@...>

ers at groups < >

Sent: Tuesday, January 15, 2002 9:44 AM

Subject: [] January Newsletter Vol. 2 No. 1

> Perspectives

> January 2002

> Vol. 2, Issue 10.

>

> In This Issue:

>

> 1) Ships Ahoy! My Travel Career - by Ruth C.

> 2) Laser Tag My Way - by M.

> 3) Hope for Awareness - by Libby B.

> 4) A Doctor's Hope - by Paolo Vinci, M.D.

> 5) Ninety Years with CMT - by Bea S.

> 6) Sandals in January for This Traveling Man - by Bob D.

> 7) Cabo's Travel Horizons - by Terry L.

> 8) Patric's Wish and Swedish Hope - by Rose-Marie I.

>

>

> 1) Ships Ahoy! My Travel Career by Ruth C.

>

> My traveling days began in 1965 when a college roommate and I joined a

> group for an adventure in Europe. At that time I had been living with

> evident symptoms of CMT for 22 years. My grip strength was weak and I

> goose-stepped to compensate for foot drop and no working muscles in

> either foot. My balance was poor, but I could manage to stand still

> for several minutes. My CMT had seemed to be in remission for about 10

> years. My main symptoms appeared to be " a partial paralysis " below the

> elbows and below the knees. CMT was a major nuisance and inconvenience

> but it did not keep me from enjoying life; it only slowed me down a

> little.

>

> I boarded my first ship in 1965, the old Queen , on it's very

> last Atlantic crossing. I had a wonderful five days crossing from New

> York to Cherbourg, France. I remember rocking and rolling, laughing and

> holding on to the rails as I investigated and navigated the ship. I

> remember sneaking onto the First Class decks and being sent back to the

> Tourist deck I remember the elegant tapestries on the walls and the tea

> and little cakes served at 4:00 each day. I remember being selected by

> the Captain's First Mate to start a snowball dance on the gigantic oak

> dance floor. I remember having my first taste of caviar. I remember

> the excitement of my first big adventure and not wanting to miss a

> minute of it. When we arrived in France we all piled into a bus and

> for the next month we spent 12 to 15-hour days traveling through nine

> countries, stopping at one or two of the major cities in each and

> touring castles, museums, monuments, nightclubs, pubs, canals,

> factories, tulip fields..It was a " today is Tuesday, it must be Belgium "

> trip.

>

> I remember having my suitcase packed and out in the hall by 6:00 a.m.

> every morning and nearly every evening arriving at a new hotel around

> 10:00 p.m. It was a grueling, tiring routine, but it was a wonderful

> adventure. At the end of the month we boarded the Oriana in South

> Hampton, England and cruised back across the Atlantic stopping at

> Bermuda, Nassau, transiting the Panama Canal and docking in San Pedro

> harbor in California. I don't remember much about that ship, as I was

> exhausted from the rigorous land trip and I was unwinding and anxious to

> get home. What I do remember is climbing into a top bunk for 15 nights

> and managing it without much difficulty. Today I require a bottom

> bunk. No more ladders for me!

>

> Seven years went by before I could afford my next trip. This time it

> was a Caribbean cruise. I love the water, the chance to visit a number

> of exciting ports and the opportunity to meet lots of new people. Even

> though I went alone, I never felt alone. A major bonus was that I had

> my hotel, restaurant, spa, movie theater and night clubs all under one

> roof! The bang that I got for my buck was a tremendous value! I only

> had to unpack and pack my luggage once! I was sold on cruising!

>

> I have a regular travel companion now. I got her hooked in 1987 and at

> least once a year since you will find us cruising somewhere. November

> 2001 found us on a 21- day round trip from Ensenada, Mexico to the

> Hawaiian Islands. We were on Royal Caribbean's Vision of The Seas

> (about 3 years old). This is the longest cruise that I have taken and

> the most difficult (due to shortness of breath rather than mobility),

> but I loved it anyway!

>

> There were a limited number of handicap staterooms on this ship,

> assigned on a first come first served basis. There was a large

> bathroom with a roll-in shower with a seat and a large bedroom with

> plenty of space to move around. The trade-off was less closet space. I

> have never requested one of these rooms yet, but may in the future. My

> main difficulty in the standard stateroom is climbing up a step into the

> bathroom as my thigh strength is nearly gone now.

>

> On the older ships, there were lots of thresholds to step over. Then

> ramps began appearing on either side of the thresholds which went from

> the inside of the ship to the outside decks. I guessed that my Little

> Rascal scooter would get hung up on those ramps and decided it was not

> worth the logistics in trying to use it on a ship. However, on this

> newer ship the step-overs have all but disappeared. Wheelchairs were

> common, both electric and manual and I saw several scooters. Elevators

> made all areas of the ship accessible and there were handicap bathrooms

> scattered around near public areas. There were special lifts for

> wheelchairs to the tender platform and several strong crewmen would lift

> the chair into the lifeboats for the trip to the shore when the ship

> anchored out in the harbor.

>

> My new Virtual Gait double helix braces made walking much more

> comfortable and gave a lot of support. However, I used one crutch on a

> regular basis to aid with balance, and I took the second crutch folded

> in my suitcase just in case it was needed if I injured myself.

>

> I can no longer carry a tray if I choose to eat at the buffet instead of

> the full service dining room , but there are always shipboard personnel

> willing to help. I take most of my meals in the dining room where I am

> totally pampered! When on shore, I prefer taxis to buses for sight

> seeing because they are easier to get into and are generally less

> expensive if shared with several people.

>

> Many of my cruises are chosen because of price, with destination being

> secondary because the ship can be a destination in itself! Using that

> strategy, I can afford to go twice as often! I don't know where my next

> cruise will take me, but I am happily anticipating it!

>

>

> 2) Laser Tag My Way - by

>

> " I will play hard, I will play fair, I will win. " These are the words I

> recited with my youth group before a game of Laser Tag one Sunday

> afternoon. As I chanted these words with my friends, I couldn't help but

> wonder what the game held. To me, it almost felt like a test I had to

> take. A test that would show me how much I can keep up with my peers of

> normal strength. It had been 2 years since I last played and since then

> I had received my CMT Type 2 diagnosis and developed many problems.

>

> I entered into the dim room, with friends on both sides of me. Everyone

> took off, walking as fast as they could. With ramps and a heavy laser

> gun in my hands I couldn't keep up for very long. I quickly got

> separated from my friends and hid myself in a nice spot where I could

> shoot without having to walk too far. I did this for most of the game,

> changing locations a couple of times. It was easier than trying to find

> people, I just let them come past me. Soon the game was over and even

> with my minor movement, I still was tired. I played another game and

> afterwards was even more tired. But it was fun!

>

> This game showed me a lot. Like I said earlier, it was a test. It taught

> me that although I can't keep up with my peers of normal strength in a

> conventional way, I can come up with my own way. Others will do things

> in ways I can't. But that doesn't mean I can't do them. It just means I

> can do them in a different way. We can make things awesome in our own

> way!

>

>

> 3) Hope for Awareness - by Libby

>

> Just what is Hope? What does it mean? Hope is different to each person.

> I like to be a bit philosophical at times and play with words. I find

> an acronym to fit a particular word. This helps me focus better what it

> means! It also gives me more ability to apply it so it becomes useful!

>

> My acronym for HOPE is H = Humble, O = Optimism, P= Positive Persistent,

> E= Eagerness. When I hope, I am humble for a result. Not expecting or

> demanding but desiring it! I try to stay Optimistic for that desired

> result. That creates a positive persistence, and eagerness to achieve a

> certain result!

>

> So, what is my HOPE for CMT organizations, the people and families that

> CMT affects? In the year 2002, AWARENESS becomes our HOPE! We are all,

> humbly optimistic, and positively pursuing more eagerly for AWARENESS!

> Awareness is the key for each one of us. Education about CMT helps

> non-CMT affected people understand and be better equipped to help us.

> Thus, they learn our needs and what we encounter. Awareness through

> education gives the non-affected more knowledge to search out new

> treatments, a cure, and a better quality of life for us. It teaches

> others about being able to give more support for the daily obstacles we

> must overcome! With AWARENESS, our future and our HOPE become brighter!

>

>

> 4) A Doctor's Hope - by Paolo Vinci, M.D.

>

> This is a short article on what I hope will happen in 2002 from a

> doctor's and a CMTer's perspective, of which I am both. Let me say that

> my greatest hope is always a resolute treatment that not only stops the

> disease progression but also gives us our muscles back. I do know that

> this hope of mine (and my mother's for me) is impossible to become

> reality in 2002, although it will probably be in the future, as already

> happens for other tissues, such as skin, that are regenerated.

>

> Coming to more feasible things, I hope that researchers will work harder

> and with more dedication in order to find a treatment, at least for the

> severe CMT cases to stop the progression above the knees and in the

> forearm.

>

> For all cases, I hope that more awareness about CMT and its

> rehabilitation management would spread all over the world in order to

> allow all CMTers to maintain their own functional abilities and live a

> normal and serene life.

>

>

> 5) Ninety Years with CMT - by Bea S.

>

> Hello Friends. I'm Bea Silbert, born June 13, 1911, the youngest of 9

> and the only one born in America. My father always " walked funny " but

> no one knew why, nor did they ever try to find out. To date, in my

> large family, only my daughter Joan has been diagnosed with CMT. I tell

> Joan I'm sorry I passed it on to her. She always says, " It could be

> something worse. "

>

> When I was growing up I was very clumsy and often fell, resulting in a

> variety of broken bones. Finally, in 1960 I started to seek medical

> attention for the problem. It was a mystery to the medical profession.

> But it was recommended I get braces. I thought I would have to wear the

> heavy metal ones like FDR wore. I refused to get them and continued to

> fall. In 1975 I got the lightweight Afoot. After that I had a whole

> new life, started to work, went on trips, and enjoyed going on the bus

> to Atlantic City casinos.

>

> When my husband passed away, I moved to a senior citizen high rise

> apartment. There I ran the gift shop. I was the only one in the

> building of more than 200 apartment dwellers that could handle the

> books and money without any mistakes. But my hands and feet started to

> deteriorate. I often fell and needed help with almost everything. I used

> all the services offered by the City of Philadelphia. Finally, two

> years ago I realized I should not be living alone and moved to a nursing

> home.

>

> Life in the nursing home is not to my liking but I try to make the most

> of it. Many residents are confused and can only speak their mother

> tongue, forgetting their English. I can still understand several

> languages from my youth and the staff often asks me to translate.

> People are calmed when I speak to them and they can understand me.

>

> My daughters made me a wonderful party for my 90th birthday and are

> planning a real BLAST for my 100. You can see 3 pictures of me in the

> CMT files and photo section. Well, I made it through 90 years with CMT

> and as Joan says, " Could be worse. "

>

>

> 6) Sandals in January for This Traveling Man - by Bob

> D.

> I'll start by saying that I am a 52 year old male, a commercial banker

> by occupation, and was diagnosed with CMT about 2 or 3 years ago. I

> guess that I would say my symptoms are moderate as compared to some of

> the postings I read on the CMT boards, but they are creeping up on me,

> nonetheless, and are annoying to say the least!

>

> So, here I sit on the East End of Long Island, New York in mid January,

> about 35 degrees outside, raining, and miserable! So what did I just do?

> I went out and bought a new pair of sandals to where on the beach! Yes,

> I really did..............have to get ready for the next vacation trip,

> you know! Bette and I

> love to travel, always have, and like nothing better than to plan and

> get ready for the next trip. During 2001, we were fortunate enough to be

> able to spend time on the island of St. Marten (in March and November),

> Washington, DC, New Orleans, and Baltimore.

>

> I've heard that some of us folks with CMT have become worried about

> traveling because of uneasiness with walking, embarrassment over

> dropping something in public, or funny looking legs in a bathing suit!

> My unscientific observation on these concerns is quite simple, " Hooey! "

> No, I am absolutely not unsympathetic to my fellow CMT'ers whose

> symptoms are worse than mine.

>

> Yes, there are times that I come out of the water and onto the beach on

> my hands and knees because this is a particularly difficult maneuver for

> me. Yes, I have dropped my knife on a tile floor in an elegant

> restaurant so that the noise caused heads to turn. Yes, the sidewalks in

> the French Quarter of New Orleans are amongst the worst in the world and

> I had to stare at my feet while walking and hold on to the buildings as

> I went. And YES, I already have three trips planned for 2002!

>

> My point here is very simple. My physical situation requires me to be

> more careful than Joe Average, and many functions take me a bit longer

> to accomplish. So far, I have never noticed that this is a bother to

> people around me when I travel and, although annoying at times, it

> doesn't bother me either. None of my CMT issues are going to get in the

> way of my enjoying the trips that I look forward to all year long. What

> we ALL have to remember is to go at your own pace, get out and do what

> you enjoy, and LIVE!

>

>

> 7) Cabo's Travel Horizons- by Terry L.

>

> Introduction: I just recently returned from a wonderful vacation spot in

> Mexico - Cabo San Lucas. My only brother built a vacation/investment

> house in Cabo approximately 4-5 years ago and my immediate family

> (mom/dad, me/husband, brother/wife and 2 kids) went to see this

> beautiful home with the lovely view. Finally! We all had a wonderful

> time. I knew though that walking around would bring some challenges for

> me as well as my dad.

>

> About Dad and I: I am age 53 and my dad is age 82. We both have CMT.

> I wear AFOs. My dad does not. My left foot is very strong -- the ankle

> still continues to remain strong and has remained the same for many,

> many years . My right foot is not good. Weird that one is good, one

> very bad. I had surgery approximately 1 ½ years ago for ankle roll out

> . I definitely will need more surgery on this foot in the near future.

> This surgery helped tremendously in a couple of ways: the doctors

> corrected the high arch and lengthened the toes so my foot would walk

> flat to the ground. I also had a tendon transfer to make the ankle

> stronger (the tendons from my toes were transferred to my ankle), but

> this portion of the surgery was not enough to prevent ankle roll out.

> My dad has never worn AFOs. I felt walking would be so much easier for

> him with them, however, this is an individual decision and his choice

> was not to wear them, although walking in the past has been with

> difficulty because of a high steppage gait.

> My dad is a former body builder, loved to play tennis and garden. Dad

> is presently using a walker because of complications with recent hip

> replacement on his right leg. He just recently replaced his standard

> walker with a more updated model - one that has large wheels and glides

> along rather than having to pick it up every time you take a step. It

> even has brakes! It was hard getting him to try something new, but he

> finally did. The new walker he purchased is simply wonderful (I like it

> too), it has a basket in front for carrying things and even a seat to

> sit on, already built into the walker.

>

> We finally convinced him to get it for the trip (parents can be so

> stubborn). Even my nephew Zachary loved to walk with it (and he has no

> problems with walking). I highly recommend it for others who need

> something to use for balance when walking.

>

> Walking: Walking in Mexico had some obstacles for my dad and myself.

> The sidewalks in town are very uneven and quite narrow, so I had to be

> slow and watched where I was walked. Sometimes I just held on to my

> mom or husband and that gave me the support and security I needed. My

> dad was more limited in where he could go with the walker, but was able

> to walk around where the sidewalk areas were larger and more even and

> would accommodate his walker. He was amazing though, his spirit's were

> good and he made the best of every situation . His motto is never to

> give up hope and deal with any situation the best way you can. I guess

> we can all learn something from this.

>

> My brothers place: It overlooks the Jack Nicklaus Signature Ocean Golf

> Course, hailed as the Pebble Beach of Baja and overlooks the beautiful

> Sea of Cortez. It is just breathtaking. The living room/dining room

> area had windows circling the entire back of the house which gave you a

> panoramic view of the outside. There is a 2-level outdoor patio which

> features a Mediterranean style pool, a waterfall Jacuzzi (jealous yet?)

> and a sunbathing platform area. In addition, the patio has an outdoor

> firepit and B.B.Q. area. The house also has an open courtyard adjacent

> to the entrance that displayed a beautiful waterfall fountain. There is

> also a courtyard bedroom (my niece had this room all to herself). My

> husband and I stayed in a very new beautiful hotel only 3 minutes away.

> Need I say more..we lived in luxury all the way!

>

> Pooling Info: I was a bit concerned about how I would be able to get in

> and out of the pool (w/o AFOs); however, I was determined I was going to

> do it. I literally hobbled over to the pool and then sat at the edge

> and went down each step of the pool (sitting) - once I was in the water

> I could do everything anyone else could do. Getting out of the pool was

> another challenge - I made it up each step (sitting) and when I was on

> the top step I just asked my husband to help me out. My dad also faced

> similar challenges getting in and out of the water, but with help we

> both did fine. I think everyone loves to be able to have total

> independence, but sometimes this is just not possible and it is not so

> terrible to ask for a little assistance. I know I felt much more

> comfortable with asking for help since I was with family, however, when

> the need arises, I am sure others would help you if you asked them.

>

> The Airport Experience: At the airport my dad was escorted around in a

> wheelchair and I used his walker, which helped me to get around. The

> walker was a big help with luggage, we loaded all the luggage onto the

> seat and just pushed it along. It had a dual purpose, great for walking

> and great for carrying hand luggage while traveling. Having something

> to push around gives me stability, especially when I have long distances

> to walk.

>

> I found traveling very accommodating, airport assistance wonderful.

> Since my dad is unable to walk at all without the walker, airport

> personnel are right there asking you if you need a wheelchair or any

> other special accommodations. That was very comforting. The airline

> personnel wheeled dad around in the airport, never leaving his side.

> Dad was always boarded before others, so this was nice since he needed

> some extra time/attention to get situated before others started to swarm

> into the plane. When we arrived in Cabo, my dad was helped down the

> steps going out of the plane by airline personnel. They asked me too

> would I be able to walk down steps on my own. I can, with the help of

> my trusty AFOs, do almost anything (except I cannot run), but running is

> not important. Whenever I am feeling down (and it does happen) I can

> always find someone else who has it worse than me and I am thankful for

> what I do have and what I can do. My dad's life has changed

> dramatically after his many hip surgeries, but still at age 82 does not

> let CMT/nor the fact that he has extreme difficulty walking/using his

> hands, keep him from doing things he wants to do. Both our lives have

> changed as a result of CMT, however, I try very hard not to let it get

> me down. I think with the help of various medical aids and most

> importantly " a positive attitude " , you can do whatever you want to do in

> life, even if you have CMT. Despite some difficulties, dad and I had a

> wonderful time and so did the rest of the family. I definitely plan to

> go back to Cabo in the distant future, I loved it. Guess I better start

> saving my money!

>

> In Summary: Traveling opens new horizons. It's wonderful seeing how

> others live. Mexico is so different from here. Cabo is surrounded by

> many hills and valleys. The weather was very predictable (no rain at

> all..each day was nicer than the next). The foliage (palm trees, cactus

> and flowering plants) was quite abundant. I saw butterflies, lizards,

> all sorts of species of birds. I loved seeing the old and new areas of

> Cabo. The " taste " of Mexico was everywhere...in the housing,

> restaurants/food, office buildings, shops and the people.

>

> Traveling opens up new things for you to see and experience. Traveling

> takes your mind off your problems and let's you relax and focus on other

> things. We ALL need to do this. It takes some of the stress out of our

> lives, even if it's just temporary. Traveling is where it's at.

> Remember: Relax and enjoy life.. AND ALWAYS STAY POSITIVE!

>

>

> 8) Patric's Wish and Swedish Hope - by Rose-Marie I.

>

> For myself, my family and for CMT persons all over the world my greatest

> wish is that the scientists will make much progress in finding a cure

> for CMT giving us all hope for a better future. My ten-year-old son was

> talking to a friend the other day, a boy with mild allergic problems.

> Patric asked him. 'If you got the opportunity to choose between getting

> well or getting a billion of crones ($1,000,000) what would you choose?

> The friend replied 'the money.' Patric choose getting well.

>

> I know that life can be really wonderful despite CMT but sometimes it's

> very tough especially for the younger ones. Just imagine the feeling you

> would get if your doctor wrote to you offering a treatment, which could

> work. Just a treatment, which would make the progressing

> muscle-deterioration stop, wouldn't it be wonderful - what a dream?

>

> It's easy to get scared about having CMT and all it involves. But now,

> with this New Year my greatest hope and wish is better care, treatment

> and research for CMT, throughout the world. I need to look forward to

> the day Patric gets his wish. Let us all work together for a better

> world in every respect - including a cure for CMT disease.

>

>

****************************************************************************

*********

> Next Issue: February 2002

>

>

>