Sept 10 My CMT Journey continues..
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"CMT symptoms may also appear in the arms and hands. Wasting of the small muscles of the hands causes finger curling and difficulty in straightening or abducting them.” (CMTA What is CMT) Between the ages of 14-16 I had surgery on my hands. They tried to take the ligaments out of the middle finger and transplant it into the thumb. I had to wear a cast from the elbow to the fingers. At least I could bend my arm. We were hoping the surgery would give more stability to the thumb and to be able to pick things up like a coin or make it easier to button or hold a pencil. In my junior and senior year I was pretty much a wall flower. Where all my friends were dating and enjoying high school I became more withdrawn. I wasn't very social-able. I was shy and extremely insecure. A happy day for me was my graduation day. I got my parents old car a 1962 Ford, which needed lots of work. For me I saw freedom! Funny thing was we never were able to get that car to run much. I then received a 1966 Oldsmobile. Now that was my ticket to freedom. I was through with school and through with surgeries. A whole new world was waiting for me. To be continued...If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge 

Me with my best friend Kathi-Ann  

Mom and me 1973

Sept 9 My CMT Journey continues....

My older sister, Laura, was my role model when I was growing up. She was popular, beautiful, fun and smart. Laura excels in everything she sets her mind to do. We have had a lot of good times together. She always made me laugh. Laura does not have CMT. Laura's friends, boys and girls, always treated Patty and I with kindness during our childhood. One day Laura and her friends were kicking a soccer ball around. I joined in the fun and started kicking the ball. I lost my balance and my right knee popped out. It was so painful. I had no idea what happened. I was lying on the ground trying to crawl to the front stoop. Patty saw me and asked what I was doing. She said, “Get up you look silly doing that.”Patty didn't know that I couldn't get up. “Because our knees take the brunt of our many falls and with our foot and walking problems they can become weak, the knee caps can dislocate.” (CMT and Knee Problems, CMTA) My knee dislocated, many times causing me to loose balance and fall. It has happened at weddings, church, parking lots, at home and in public. It could just be a slight turn, tripping over something, or someone just accidentally bumping into me. No warning and could be quite comical. Although as I am laying in pain I don't find it funny. The falls and dislocated knee didn't cause any serious injuries and the pain receded quickly. Because I have no fore warning it was and is a concern and scare for me. When I was about 17, I tripped over our  miniature poodle, Taffy, and fell into the wall and floor. My head put a hole in the wall. What an uproar that caused for my parents. We were all quiet watching TV before hand and I got up to go into the kitchen. Our dog used to lay right by the kitchen entryway. Boom, I fell right on top of the dog, she turned around and bit me, not hard but enough to break the skin. Dad yelled at mom, blaming the dog. He didn't know I had also inherited his knee problem. Thank God my sister Patty doesn't have problems with her knees dislocating. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge 

Laura

Me at 16

My CMT Journey continues...

Sept 8

I was in middle school, or junior high we used to call it in NY, during some of my surgeries. It was a difficult time with my peers. Luckily my home life and friends were comforting. I received so much love from my family and friends. I loved summers and family gatherings. I don't know what I would have done otherwise. Rumors went around school that I had a wooden leg, I had few friends at school. My best friend Kathi-Ann and I were in different classes and didn't see much of each other while in school. My sister Patty's best friend was Donna. Donna was in all her classes and used to stick up for Patty when her class mates teased her. After my sister and I recovered from the ankle fusion we had to have more surgery to straighten out our toes. Another painful procedure. We were now 14 and 15 and were put in the adult ward at the hospital. Patty and I would wheel up and down the corridors and would talk with other patients. In the mornings while waiting for a nurse to come and help me bathe I would sit at the end of the bed in my baby doll pajamas. I used to drive the nurses and nuns crazy. They were always running in my room and covering me up in a sheet or closing the doors. I guess there were a few men walking back and forth in front of our room peeking in and waving. I remember one guy came into our room and a nurse had to come and usher him out. I was very innocent back then. I met a patient, a young man in his 20's, named Brody. I had such a crush on him. When we were in the elevator coming back from physical therapy Patty mentioned to a girl, who we later found out was his girlfriend, that I had a crush on Brody. His girlfriend told us he was going home that day. But he did call me twice while in the hospital. I was floating. What a great way to boost a young gals self-esteem....... To be continued.....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge

Family Reunion 

Me 7th grade

Patty, my cousin Kathy, and myself

Sept 7 My CMT Journey continues...

Sept 7 My CMT  Journey continues....

Several weeks later we went from a full cast to half a cast and was able to walk on it. I think the fact that I had to stay home from school and recuperate was a joy for me. However, it had to come to an end and back to school we went. We had one of those small yellow buses pick us up in front of the house. Here's a challenge for those who choose to take it. Try wearing a piece of clothing inside out and backwards where the tag is facing the front. Or find a way to stand out in a crowd. See how many people come up to you and tell you your wearing your clothes wrong. In fact use that as a way of explaining what it's like to be different. Maybe use it as an awareness for CMT. I had so many class mates stare, tease, and ask loads of questions about wearing a cast and the big ugly black boot. I hated being different. What I experienced back in the late 60's would never have been tolerated today. Here is an interview with Dr. Charlotte Thompson and Linda Crabtree a fellow CMTer and activist for this disease. “CMTI: When the child is ready for school, how would you suggest the parents approach the school to prepare them for the child's needs?
Dr.T.: They need to make the principal and teachers aware of the problem. Otherwise the child may be laughed at, may have problems with fun activities and be forced to sit by the sideline. Activities should be worked out so he or she can do fun things with friends. Forcing a child to sit by the sidelines is illegal in the U.S.A. We have an attorney for special education in our center and she actually helps fight battles with schools.” Dr Thompson is the author of Raising a Handicapped Child: A Helpful Guide for Parents of the Physically Disabled. (CMT News Archives) The ice bucket challenge worked wonderfully for ALSA. Will you take the challenge and do something today that causes you to stand out in a crowd. For the really brave wear your underwear outside your clothes. No, better not, I think there's laws against that. Be creative take a picture and share with us while we journey together this month. Pictured here with my brother , I am in half casts on both legs, and with sister patty who also had half casts (not shown) To be continued.....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge 

Me and my brother ED

Me and Patty

Sept 6My CMT Journey continues....

I do remember a beautiful soul named Sister Martha who sat with mom and comforted her after Patty and I were brought in from surgery. When Mom walked into the room and saw us dazed, sick and in pain she broke down. Sister Martha found a quiet place and she and mom sat and talked, cried and prayed. Sister Martha also gave Patty and I stuffed animals. But all was not sad. Children are resilient. Patty and I used to have wheelchair races up and down the hall outside of our hospital room. We would take empty syringes and have water gun fights. What was a serious time became a time of fun and games. The nurses and staff were so kind, and being it was a Catholic Hospital we had many visits from nuns such as Sister Martha. God had us in the palms of His hands and we didn't even know it. Our first surgery consisted of having a cast covering the whole length of our leg. From our toes to our hips pretty much. My mom had to carry us into the house from the car when we came home from the hospital. A neighbor came over and tried to help. We learned how to walk with crutches and was home schooled. I remember the agony of my leg itching so bad. I tried find things to put in the cast to scratch in places the fingers wouldn't reach. I got a pen stuck and I had to cut part of the cast to get the pen out. To be continued..... If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge Pictured here with my sister, Patty after surgery and us in wheelchairs

Feeling crummy after surgery

On your mark get set go

My CMT Journey continues...

Sept 5

St Charles Hospital was also a teaching hospital. There were times unbeknown to us that we would have to wear a hospital gown and walk in front of a class full of students. One particular time, as my sister Patty and I finished our runway modeling, we sat on the examining table while the doctor described to the students the treatments they planned on doing. Patty leaned over and whispered in my ear, “You have a hole in your underwear”. I asked “Can everyone see it” and she nodded her head. Ohhhhh a person's worst nightmare. I just wanted the earth to open up and swallow me. I must have had a look of horror on my face as when I looked up a few of the students were smiling at me. Treatment back then was surgery. Some types of CMT cause damage to the covering (myelin sheaths) that surrounds nerve fibers. Other kinds of CMT directly damage the nerves fibers themselves. In both cases, the damaged nerve fibers result in neuropathy. The nerves in the legs and arms, which are the longest, are affected first. (CMTA What is CMT).The plan was to fuse the ankle to keep the foot upright and not drop. Dr Goodrich was introduced to my sister Patty and I as our surgeon. I was 11 years old at the time and in February 1968, I underwent my first surgical experience. I got so sick afterward, due to the ether used in putting us under. I still can't smell ether without getting nauseous. I had heard from relatives on how upsetting this was for my mother and father. My mom tried to be strong for my sister and I and for my dad. But there were times I was told that she had to pull off to the side of the road and cry after visiting us in the hospital. To be continued....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge 

Patty and I 

 

Sept 4 My CMT Journey continues,

My mother brought my father with her to one of our appointments and it was confirmed that he had CMT not Polio. He was told as a child he had a form of Polio. Being that all their children were vaccinated against Polio it came as quite a shock that out of their three daughters two inherited the CMT gene. My sister Patty a year older than me, was also diagnosed at age 12, with CMT. My dad who was usually so compassionate and loving towards his daughters became overwhelmed with guilt. My mother did everything she could to keep our lives as active as possible, that included signing us up for girl scouts. My mom always encouraged us to do what we could and not let our disability stop us. She wasn't the type of mother that hovered over us and had us live in a bubble. However, if it came down to safety or danger she was always there to stop us from harm. The good news was that my brother, Eddie, was only a few years old during all this turmoil, and was a joyful distraction for all of us. How love can heal the deepest hurts. My brother was such a loving baby and spoiled by all of us. Although my mom worried about Eddie showing signs of CMT, he never did and he became the hands and feet for my father. To be continued.... If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge

Myself, sister Patty and brother ED

My sister's, Laura and Patty with my brother Ed and myself