Sept 27, My CMT Journey continues....

Last weekend was our ,1^st Annual Shark Tournament, CMT Fundraiser. I arrived at 7:45 to a muddy, drizzly day. I pulled my walker out of the car and pushed in the mud to get to the table where we were registering our fishermen and women. Sat with my coffee and said a prayer before the day started. A few people arrived and sat waiting for our boats to come. My son, Joel, tried calling me but I was busy registering our fishing team. A few minutes later, a distraught Joel comes barreling in to announce our Captain Dave's boat would not start this morning and Captain Steve sent a text message saying he was out of town and would not be coming. Those were the two boats we had arranged to fit out team of 7 people. Captain Dave tried contacting other fishing captains he knew to help but to no avail. I called a family member who does charters and she announced that no one was going to go out in this weather she recommend we cancel and reschedule. Well we have sandwiches and salads already made, we have people coming from two hours away, and we have people already standing by waiting. One thing about those of us who have CMT is quitting is never an option. If anyone one knows what it's like to persevere it's people with disabilities. So once again I prayed and prayed hard. A team of fishermen and women came to register and had their own boat. “Do you have room for more?” I asked. They didn't. So off they went. We still have 4 people who showed up and are waiting. Two people from the other coast called and said they would come for lunch but canceled fishing. Finally a friend of my sons came with his team and was able to fit the four men waiting on their boat. Thank You, Lord. Now that we had the fishing team out it was time to set up for the lunch and raffles. A half hour after our fishing team departed the heavens opened and it poured for over an hour. Thankfully no lightening. Another family heard about our tournament on the CMT facebook page and drove two hours to support this fundraiser. Our out of town guests had a son, Anthony, age 13, first in their family who was diagnosed with CMT. We had the opportunity to share information and support. My sister, Patty, a CMTer, and other family members helped set up our lunch and raffles. Joel took a few land lovers along with our new friend Anthony and fished off the bridge. I went around with my scooter to introduce myself and help sell raffles. We had over 40 people show up for lunch. Our fishing teams arrived and we took pictures, gave out prizes and raffled off some great gifts. No sharks were caught but it was a great time for CMT friends and family to come together in fellowship and fun. We are still accepting donations so if you haven't given and would like to you can give to http://www.cmtausa.org/url/sharkchallenge. or to the MDA http://www2.mda.org/goto/CMTChallenge

A very special thank you to all our friends and family for coming out to this event and supporting us. With your help they will find a cure and stop the progression of CMT.

A round of applause goes out to the following businesses for their generous gifts.... Olde Fish House Marina, Joel @239 Mobile Detailing, Capt DJ at Florida Sons Fishing Charters, Capt Cathy Eagle @ Capt Jack's Boat Tours , Publix, Danny Yates Landscaping, Marine Trading Posts, Barnichol Hardware, Regenica by Stephanie, Vapin Apes, Rob's Bait and Tackle, Cape Tool and Tackle,Anderson Tackle, Applebee's, Outback, Island Grill, Olive Garden, Perkins, Bonefish Grill, The Morrings, Saltwater Smoke House, Bubba's, Jets Pizza, Target, Golden Corral and Winn Dixie, 

 

Team #2

Team #1

Our CMT Friends and Family

Sept 26 My CMT Journey continues...

 Last November my sister, Laura, gifted me and my family to a wonderful cruise. I was so blessed in having a time filled with so much laughter. I struggled with getting around but my family was great, especially Laura, who pushed me when walking was difficult. I do remember one time when an attendant carried me off the Tender ship and onto the cruise ship after a day at port. He was an answer to my prayers. Wherever I go I usually need help with someone opening the doors for me. I joined two bible study groups. I drive to my destination and someone always comes out to get my walker, help me into the house, serve me coffee and delicacies. Totally spoils me. Thank you guys. I am so amazed that Florida being a handicap friendly state how unequipped they are for people with disabilities. Places like physical therapy, doctor's offices and many restaurants make it difficult to get into. No one has automatic door openers. I was at Target in the electric cart and had to use the restroom. The hallways are so narrow where the bathrooms are. They actually have one for those with disabilities but you couldn't fit, a walker, a wheelchair or a scooter in there. One time while trying to get into the restroom with the help of my sister, a man was so concerned in watching me get out of the scooter and hold onto to my sister to try and get in  he walked into the woman’s room. We were laughing so hard both of us almost fell. Just a few days ago I was in Target and had to use the facilities. My sister was talking to the manager about getting a gift card for our fund raiser. So I went in the electric cart. I tried to fit into the woman's restroom. I asked someone if they would hold the door open for me. She held it until I was half way in then let go. Guess she had to go really bad. Well  now I'm stuck. The back wheel is rubbing against the wall. I can't back up as the door is leaning on me. Thankfully a woman was waiting for her daughters so she held the door open. Now I back out and pull in. I turn the cart and try and go into the handicap facility. I couldn't reach to open the door. I had to ask for assistance, well the

next  person who comes out of the stall happened to be the same woman who left me dangling with the door pushed against me. With a look of annoyance, she opened the door, I got in did my business and was able to push the door out with the scooter. Now I'm the only one left in the bathroom and I can't reach to open the door to get out. I was thinking this must be how a dog feels waiting for a human to let them in or out. Should I start barking? Maybe someone will let me out. I had to sit there a few minutes until some sweet young girl around 9 opened the door and held it open for me. My sister finally arrived and helped hold the door so I could get out. Well you know I won't let this one go. I already called the manager. Perhaps my job is to be an advocate for the disabled and go into stores in the electric cart and see how doable it is to use the restroom. If I didn't have the support of my family and friends I would be devastated.

If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge

My Cruise Caretaker
Patty, Nick and Laura

Patty, Laura and I

Me scooting along

Sept 25 My CMT Journey continues....

During one of my exercises, in walking with a cane, my right knee buckled and I crashed hard on the floor. I now fractured my lower back. More rest followed by more in home therapy. My sister Patty is more functional but was having difficulties with walking and back pain. We both researched and visited many orthotic specialists in finding a different leg brace to help us. I wanted to try a new type of leg brace called Phat Brace. They are the Cadillac version of what I wear now. However, it is very expensive, after insurance it was $900.00 out of pocket. So my niece, Christine, surprised my sister and I with a fundraiser garage sale. She raised enough money to cover our expenses. Unfortunately for me the new braces didn't help at all. My legs were getting weaker and nothing was going to give it support. My niece did find an electric mobility scooter at a garage sale and so the money that was for braces went towards the new scooter, repair and a new battery. “If knees get too weak the person no longer can stand reliably and falls become so severe that a cane, canes, a walker or an electric wheelchair or scooter is used for safety and mobility. A person can get to the point where they'd rather use a mobility aid than risk more pain and damage from falling. It is then that mobility aids are accepted and used willingly” (CMT News). I came to the realization that in the last three years of falls, fractures, surgery and physical therapy I am as strong as I'm going to get. MDA doctor confirmed what I thought. He told me to stop all therapy, stay as active as I can, but don't over do it. I already spent three years home bound. I had my praying friends come by and we had “Ellen's church”. We sang, prayed, had communion and a message of hope. What is God's purpose for me? I didn't understand all that was happening and why I couldn't get my strength back. I told my husband one day at dinner, “I don't think I'm going to get better. I think this is it”. My husband responded, “Don't say that I don't know how much more I can do”. He was already doing all the food shopping and cooking. That night I cried myself to sleep. I felt so useless and a burden. It was then that I started the grieving process of loosing my independence and use of my legs in being able to walk functionally. I needed to use the walker from now on. I'm just at a high risk for falls. Patty, walks without the use of any aids like a walker or cane. She shops, cooks, cleans, socializes and helps her husband with work related issues. I know some see Patty and how active she is and compare me to her. I am left at times feeling like a failure in that others think I don't push myself enough and I'm being lazy, or making excuses. If you ask my husband, Doug, how hard I work just to maintain what little muscle I have, he will tell you I  work at it daily. I understand as my loved ones watch me struggle they want me better so it's their way of support.“The severity of symptoms varies greatly among individuals and even among family members with the disease. Progression of symptoms is gradual. Pain can range from mild to severe.” (Charcot-Marie-Tooth Disease Fact Sheet, National Institute of Neourological Dosorders and Stroke) Research has come far over the last 20 years. They are working on eradicating CMT like they did polio. Below is a model of a new drug they are developing and having some success with rats given the cmt gene. But research costs money. Every dollar given helps people like my son and future generations. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge Pictured below model of research, Chris at garage sale, Paty, Chris and me. Me with my walker

Sept 24

The first picture I am hoping shows up is a drawing of healthy nerves and then one effected from CMT. The cmtaus.org takes 100% of the proceeds and use it towards research. The MDA has 77% of donations going towards research and the rest is utilized for camps for kids, clinics, repairs ect. Please as my story winds down I ask if you have any funds left in your pockets to help speed up the search for a cure so my son and other children do not have to experience what I and others are enduring. 

My CMT Journey continues.....One morning I walked quickly  to the ringing phone. I tripped and both my knees popped out causing me to fall on top of my left ankle on the tiled floor. I was in so much pain. I crawled to a chair but couldn't get up. Doug had to help me into bed. My sister in law Angela worked for a neurology group and set up an appointment for me. It was my 56th Birthday. I had fractured my ankle and had to stay off of it for 6 weeks. It was only a week later that Doug 's back went out on him. He and I were both a mess. Our church helped with dinners and my son was a tremendous blessing in doing what he could. Usually in September, Doug and I, would spend a week at our honeymoon spot in Manasota Key. We would get a cabin on the beach and spend time in tranquility. Well this is the day that my dreams died. I would no longer be able to sit at a beach or wade in the water. I didn't realize the hardship waiting for me. I tried so hard to get my strength back. I memorized and quoted this verse from Psalm 121. “He will not let you stumble or fall. He who watches over you never sleeps”. I would recite that prayer before and during my walking attempts. When I was able to put weight on my legs, I walked outside to do some much needed weeding. As soon as I walked on uneven ground my knees buckled and I fell. When I vacuumed my knees buckled and I fell. I tried to push myself to walk from one side of the room to another, my legs would shake and I had to grab onto the couch or counter top to keep me from falling. I was emotionally, physically and spiritually wounded. I learned the importance of not using the word of God out of it's contexts. During my next visit to the MDA doctor, I was told more physical therapy.   He explained how it takes time for CMTers to get their strength back. So from March to the end of May I had in home physical therapy. During one of the leg exercises I was feeling my right knee rubbing against a bone. I mentioned it to the P.T. And he kept saying if you keep your leg straight your knee shouldn't be moving. Therapy ended but my knee became worse. I couldn't even walk without using a walker. Back to the doctors. I had a detached knee cap, a bone chip called a pearl floating around and a torn meniscus. It was now July and surgery was set for the beginning of August. A week after surgery more physical therapy. I had in home therapy for eight weeks than on to out patient for another eight weeks. I stopped therapy in December when insurance ran out. There are over 70 different types of CMT, and knowledge is still unknown in the medical field. Many doctors, physical therapists and medical team do not know how to treat all CMT patients. My first physical therapist pushed me to the level of damage not strength. I had to learn this fact the hard way. One of my purposes in telling my story is to educate our medical team as well as friends and family. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge Pictured here me durring better times at the beach and my grand daughter going for a ride on my walker

Sept 23 My CMT Journey continues.....

Walking has always been challenging but it wasn't until the last 15 years that I use a handicap sticker on my car. Even then I tried only using it when it was raining. My family loves it when I drive during Christmas season. Makes parking up close a pleasure. When pulling into the handicap spot, I have had many state that I don't look handicap. I then tell them that I'm blind. They don't say anything just shake their head and walk away. I guess it's OK to drive when your blind but it's not OK to park in a handicap parking place. Joel blessed our family with his future bride, Sara. She has brought along our little princess Zaniya. Both have brought much joy to Joel and to myself. I have a grand daughter who I love so much. When Zaniya and my niece Christine's children asked me about my leg braces, I would tell them they were my “Wonder Woman” shoes and I'm really a super hero. Children are curious and want to know why my hands are bent and how come I can't straighten them. I tell them, “An angel came down from heaven while I was sleeping one night and kissed my hands. It was so powerful that my fingers immediately curled up. Don't worry though as that doesn't happen to every one. Usually when an angel kisses you it just puts a smile on your face. I think this angel was plugged in to long and had to much electricity. I hope he didn't get in trouble.” I try to use my disability as an asset and and make it more humorous and interesting. As long as I'm not in pain or trying to stand on shaky legs I can be creative in sharing whats wrong with me. Instead of saying when I was nine years old I was diagnosed with a rare neuro muscular disease I come up with other stories. One day at a local Veterans Museum, a friend of my sisters saw me walking in with my struggles and wanted to know what happened to me. I told him I got wounded in the war. Than though,t “Oh better not say that here it could sound disrespectful”. Good thing he was hard of hearing because he said, “What?” I replied, “I got hurt jumping out of an airplane”.

A few years back while volunteering at my church I noticed I was having a difficult time walking and standing. My back was always hurting and I found my balance was just non existence. It felt like my legs were going to give out. I volunteered at a church function one weekend and pushed myself physically. By the end of the weekend my body just collapsed and I fell on the floor. A gal behind me picked me up and after resting for awhile I was fine. My sister Patty was and still continues to suffer with severe back pain. I used to be able to walk around the park without any problems but a few years back I found myself having to stop several times and sit. I just couldn't understand what was going on. I went to a neurologist who ran some tests on my back. Did a bone scan which showed I was where I should be at my age. Nothing came back as problematic so he suggested physical therapy. I was showing some weakness on my right hip but the neurologist felt physical therapy would help strengthen it. I did research and tried doing exercises on my own at home. It didn't seem to help so I attended physical therapy for 8 weeks. I wasn't getting my strength back. What is going on? I just didn't understand how my CMT was progressing. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge 

Sept 22 My CMT Journey continues....

I have broken many plates, glasses, coffee mugs and casserole dishes. I have spilled drinks, dropped coins at the checkout and even dropped the tube you put your money in at the drive through at our local bank. Yup had money in it and had to have a bank teller come out and get it for me as it rolled under my car. Even had a wad of money blow out of my hands while grabbing it from the teller window. Luckily I was able to retrieve all of it. When my son was born and the nurse brought my son in she asked, “Joel's mom?” I was getting off the phone so I tried to raise my hand but with bent fingers she thought I was pointing to the mom in the bed next to me. I could here my room mate saying, “Oh Dustin come to mommy”. “Nooooo”, I yelled, “That's my son, Joel”. Wonder if the nurse was having a Solomon moment, “Ok who's baby is this really?” When people wave and I wave back it looks like I’m saying “Power to the people” with my fingers curled. My hands have weakened over the years. I type with one finger and not very fast either. At the drive through I have to use both hands to grab a drink, even then I worry about dropping it. I have to use light weight Tervis Tumblers, preferably with a handle. Sometimes I actually bring my own cup with me when going to a restaurant as it can be embarrassing spilling water or some liquid on my food or worse yet someone else. “As CMT progresses, contractures in the hand can lock the fingers in a flexed position. Making it extremely difficult, painful and frustrating to get your hands to work properly. ” (MDA Charcot-Marie-Tooth Disease). In 2001, Joel, graduated from high school and vo-tech. He loves tinkering around with devices and took two years of electronics. Unfortunately due to CMT my son had a difficult time with employment. He went through more jobs in the first 5 years of graduation than I ever did in my life time. Florida has the right to work state and well if your not fast enough out you go. It was a very frustrating time for him. Joel worked at various jobs and gave it his all. Unfortunately the work force is not as forgiving as it was when I was younger. We live in a different time and disabled people have it harder in finding and keeping employment. Joel applied with Goodwill who helps train and place disabled people in companies that are handicap friendly. The Goodwill company seemed to go through more counselors than they did in providing work outside the program. Another frustrating time. Eventually, Joel started a car detailing business where he worked part time and went to college. It took quite a few years but he graduated with an AA degree in Business. Today Joel continues to be self employed with 239 Mobile Detailing where he works on boats and cars. He is hoping to build up his business where he can run the company and hire out workers. To be continued. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge 

me with curled fingers

me unable to straighten hands

Joel 2001

239 Mobile Detailing

Sept 21 My CMT Journey continues

My dad has a sister, my Aunt Stella, who is pushing ninety and CMT free. She has 2 sons, 2 grandsons, and 4 great grandchildren all CMT free. I have two sisters and one brother. As I stated earlier my sister, Patty, has CMT my other sister and brother do not. I have 3 nephews and a niece who are free of CMT. My niece's 3 children seem fine. I am so thankful that all my nephews and niece have been spared of this disease. Watching a child suffer and struggle is probably one of life's hardest times to let go. Having CMT myself is fine but my child having it is heart wrenching. I remember my mother saying she would take my disability on herself and see me and my sister live a life free from CMT. I am sure every parent wishes the same. My heart always goes out to parents who have children with life threatening diseases. The feeling of helplessness is so overwhelming when as a parent you can't fix whats going on in your child's life. In having a neuro muscular disease, I have tried to adapt to my abilities and make the best of things. Watching my son suffer is another issue. I kept Joel involved in sports like soccer, bowling, flag football, basketball and fishing. His CMT was not as active in the early years of sports. However, at the age of 13, when Joel signed up for basketball, it was becoming more difficult for him to run as the CMT was weakening his muscles. Running from one side of the court to the other was frustrating for him. I told him he didn't have to go back but he was persistent and stayed through the year. I know he always wanted to join a football team in high school. I would never consent to it and we would have arguments several times over my decision. Unbeknown to me Joel tried out for wrestling, but didn't make the team. I tried to encourage him to do things he can do and enjoy, like fishing. The fisherman blood runs in my family and in his dads. It can be difficult watching friends children excel in life, in sports, and in general favor in the job market. I have my moments in trying to understand why my son's life is so hard. “Seeing other children doing something that your child cannot do or cannot do without pain and difficulty can trigger long-hidden feelings of sadness”( cmtausa, MY Child Has CMT). Having a deep faith in the Lord is what has brought me through each difficult journey. I couldn't imagine how I could go through these times without His comfort and carrying me at my weakest moments. I get sad at times when I see Joel struggling. I'm reminded of the day when I cried out to God, when I learned Joel had CMT and that sweet voice whispered in my ear, “I made Joel for a very special reason.” I am so proud of who my son is becoming. Watching Joel put together the shark tournament we had yesterday and the passion he has for his family, I see what a beautiful soul he has. I know God is going to work through him to accomplish much To be continued. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge

Joel Bowling

Family

Joel Fishing