Pack The Halls With lots Of Folly

Have you ever felt like you were the object of a big pin ball game? In fact bouncing from side to side would best describe my shopping experience on Black Friday afternoon. I was going shopping with my future daughter in law, Sara, who was running late. I saw an attendant pass my car with an electronic cart so I asked if he would bring it to me and he did. I proceeded to go into the store and do some shopping. While waiting for Sara to arrive I went into the men's department to shop. The aisles were so narrow with the clothing racks all close together. I had to maneuver the cart  several times,  I went forward, hit a clothing rack then back up to bump off another rack, repeat, turn wheels, hit a rack, repeat again. Each time I bounced off the racks like a pin ball off a bumper. It's like a Humvee trying to fit into a parking spot designed for a Honda. I finally was able to turn the cart and started down an aisle when the wheel of the cart caught onto one of the clothing racks dragging it behind me. I had to rearrange the men's department just to to turn around. Released from the snares of the devilish racks I moved forward to get out. As I approached the end of the aisle I saw it was closed off and packed with foolish sale items offered on Black Friday. “You've got to be kidding”, I stated out loud. You guessed it, I had to back up and try all over again to turn the cart so I could be free of this nightmare. Backing up, I banged into a rack causing me and the cart to jolt. One man near by started laughing. Most people just looked the other way. I'm sure if someone video taped this and posted on You Tube it would bring much laughter to those watching. I was so exhausted and flustered by this time. I worked up a sweat and had to use the restroom. I found Sara and told her I needed to use the facility. So both of us proceeded to go into the woman’s room. Unfortunately this experience was worse. I was unable to even get into the restroom they have a small hallway and the cart is way too big to fit. I had to back out of the bathroom and into a maintenance closet so that I can try and turn the cart. I had to physically get out of the cart where Sara and I had to pull it manually to straighten it out. With my legs crossed, I kept praying I wouldn't fall or loose control of my bladder. Sara is saying “Mom be careful, what are you doing? Get back in there and let me pull it.” She's just a tiny little thing and I could not see her being able to pull the cart with my butt in it. Between the both of us we were able to get out of that predicament. Once again others are standing near by but no one offered to help, there weren't any store clerks around either . During this whole experience the only person who showed any sympathy was a little girl shopping with her baby brother. I was backing out of the aisle and hit the shelving unit. She comes running over, “ Are you OK?" she asks. Her parents should be very proud of her. I know I was. I wanted to give her a big hug but instead made it a point of telling her how kind she was to ask. Having worked up an appetite and still needing to use the restroom we left there and went to a near by restaurant.

I decided to write a letter, sharing of my horrible experience, to the guest relations department for that store. I received a reply stating that they were very sorry for my experience but they meet the requirements for the ADA (American Disability Act) and in the future if I have any problems they have Redbox telephones to use to call somebody and they can come and help me. Well while I'm stuck in the men's department there is no red phone for me to have access to nor do they have red phone's in the woman’s restroom . I then called customer relations in the corporate office and explained my situation to them. I'm not looking to cause trouble or report them to ADA but look into the situation and find solutions. They need smaller carts, instead of the Cadillac version expected to fit into the narrow aisles. I also suggested to make the restrooms more handicapped accessible where buttons could be installed on the outside of the doors enabling them to open automatically. Once again I received,  "Thank you for your response. We are sorry for what you went through. We really do care what our customers think. I will pass this information on to our corporate office". Unfortunately I don't think that anything will change.  This store is one of the few stores that offer the electronic carts plus they have the automatic door opener to get into the store. The way it is now I'm like hurricane run wild. Shoppers beware!

Psalm 40:1-3

“I waited patiently for the Lord to help me. He turned to me and heard my cry. He lifted me up out of the pit of despair out of the muck and the mire and set my feet on solid ground and steadied me as I walked along.”

I went canoeing, a few years back, at a local state park in South West Florida . I was with two other people when our canoe tipped over. The others were able to wade through the water and onto the shore. I proceeded to follow the others. However, with my leg braces on covered by pants, a vacuum of water got in between my legs and braces. It caused my feet to sink into the mud beneath the surface. I couldn't lift my feet. The water was waste deep but my feet were sinking. I cried out for help. While waiting for someone to come get me, I looked up to read a sign saying swimming was prohibited due to alligators in water. “Oh great if I don't drown I'll  get eaten by alligators”, I thought. Finally two men jumped out of their canoes and one by one they lifted my feet out of the mud and I was carried onto dry land.

Today I find myself stuck once again. This time emotionally. I don't know what my purpose in life is. I take a few steps in a direction I would like to pursue only to find myself stuck and sinking. I mentioned previously in my blogs the importance of support. My husband is going through his own stress and so we do not do many things together. Just this past weekend a few family members got together for a fun event and I was excluded as they knew physically it would be difficult for me. My son and his family are a blessing and they never make me feel like a burden. However, with their work and school,  I might see them once a week. I have asked friends to meet for coffee and we have to set it up like months in advance as their lives are so busy. I meet two times a week for fellowship at bible studies and do enjoy my time there. But other than a few a hours a week I spend most of my time home, alone. I have now reached out to a total stranger and will be exploring a prayer ministry in hopes of finding some sense of purpose in my life. I am reminded of my experience of sinking into the mud and asking for help. Remember that sign of alligators being present? Unfortunately, as we try and explore ways to get out of the pit of despair, the enemy will look for ways to stop us. But God always wins. I am learning to reach out to positive people who will support me. I'm excited to see where my life is going once I get my feet back on solid ground. I will keep you posted.

“But blessed are those who trust in the LORD and have made the LORD their hope and confidence.
They are like trees planted along a riverbank, with roots that reach deep into the water.
Such trees are not bothered by the heat or worried by long months of drought.
Their leaves stay green, and they never stop producing fruit” Jeremiah 17:7-8

Several years back ,my mother had a young palm tree growing wild in her yard. I was a single mom at the time and my yard consisted of weeds and a few shrubs. I asked my mom if I could have the tree. Upon her approval I dug it up and planted the palm in my front yard. I watered it immediately. I was so excited to have this tree grow into a majestic beauty. Every night I went outside dousing it with water. That worked well for a few months but after awhile it didn't look like it was growing. A friend from church, a landscaper by trade, came by to help with a repair. I asked him about the palm tree and how much I should water it, he told me they didn't require a lot of water. He continued, “The more you water the weaker it becomes. When the tree is dry the roots grow down into the natural spring beneath the earth looking for water. If you continuously water it the roots will stay near the top. When the roots grow deep it makes the tree stronger and it weathers the storms.” A few months later a friend was going to throw out a sprouted palm growing wild out of a coconut. I took that home too and planted it near the first palm. I made sure I didn't over water.
What I love about the above verse in Jeremiah and the palm tree experience is how God works in ways we do not understand. Like a tree's roots growing under the earth, we cannot see what God is doing. Eventually, we might see the results or the fruit of His plan. For the past three years my ministry in bearing fruit seemed to be over. I had one injury after another and felt the ravages of the storms of life. I would sit outside and watch the squirrels play and the lizards leap. At out Bible study group we were challenged to spread the word of God. To be disciples of Christ. I mentioned to my fellow Christians, how the only witness I get to give is to the squirrels and lizards. Although we had a laugh it really was disturbing. On the way home I said, “OK Lord, what do you want from me. Let me produce fruit for your glory”.
Shortly after I was on an internet chat room with other CMTers. Someone quoted a few bible verses and caused a stir in the secular group. The scripture verses were deleted from the page and the bible quoter resigned from the group. It really disturbed me. I contacted the administrator of the page and explained how someone posting “What type of shoe helps you” to “What bible verse gives you hope” should be one and the same. After all are we not doing this to help encourage one another?” After a few conversations, and her helpful advise, shortly after Easter weekend of 2014 our CMT Fellowship page was born. We are now over 75 members and it is a great place to share our experience, hopes, prayers, inspirations and Bible verses. I than continued to spread the word of hope through this blog. Just this last month for the first time in 50 years I shared my story and faith in having CMT.

I didn't see all God was doing to prepare the way. I felt at times barren and forsaken. However, I didn't give up and just kept pushing deeper. I allowed my roots to grow deep into my faith and found the spring of living water. That palm tree that grew out of a coconut, well it grew into a majestic beauty and gave off numerous coconuts. Both trees continue to grow through the droughts, heat and storms. I too am growing stronger in my faith during this difficult time in m life. I know more fruit will be produced as long as I remain in our Lord. (Romans 15:5).

Healing From The Hand Of Friendship

After sharing about my experience with how my whining has caused uncertainty with others I want to share of the ones who have stood by me in this battle. There's a story in Exodus about the Israelites fighting to conquer the land God promised them. As long as Moses held up his arms the Israelite were winning. As soon as He let his arms down they were pounded on by the enemy. So Moses brother, Aaron, and his friend, Hur, got a rock for Moses to sit on and then on each side of Moses they stood and held his arms up. (Exodus 17:12). The battle was won and they went into the land to conquer it. Like I stated previously God is all about relationships. He could of given victory to the Iraealites without Aaron, Hur or Moses. God chose to make a point in that we need each other in order to conquer the battle.  We need to put on the full armor of God (Ephesians 6:13) and  pray for each other without stopping (18). I love that, for some, praying for me has become an action, not just words. To all my friends who have treated me to lunch, coffee, parks, and visits, your time was as healing to me as Aaron and Hur were to Moses. To be accepted, the good, the bad and the ugly is a gift.

Life is busy for many. In today's economy just about everyone has to work. Those who don't are usually busy caring for children, grandchildren or family members. Today's mom's and dad's  feel exhausted in taxiing their loved ones to sporting events, doctor's, dentists ect. Those who retire are now active in ministries at church. We live in a needy society. I don't like adding to that need. If I had a choice I would rather give 100% than be on the receiving end. It has been humbling and lonely. Yet when one of my friends anoint me with their hand of friendship I am so elated. A few weeks back a busy friend called and invited me to dinner. She had a free evening and we went for pizza. What a fun time. We laughed, complained and prayed. It was soothing lotion on a chapped heart. Other friends invited me for coffee, another joyful experience. For me they are being Jesus with skin on.

Don't mistake someone being married as not being lonely. When I was a single mom many friends from church were there in my times of need. I believe the deceit we tell ourselves is that she has a husband or her children live near by. Let the Holy Spirit speak into your heart.  There have been times when our fridge has been empty and I would receive a “word” from someone who believed God wanted them to tell me something. I already know what God's word says.  I am forever grateful to the great group of friends who have given  food, money and treated me to adventures.  In my mind they are the true disciples of Christ. You guys who are my Aaron and Hur have been my encourager to write. Your validation has prompted me to share my story in hopes of teaching what it is like to be one of His chosen ones in need.

With the love and support of family and friends many hurting people overcame their hardships and shined brightly for our Lord. God does not expect us to go through our battles alone. He created us  for fellowship.  “How good and pleasant it is when God's people live together in unity! It is like precious oil poured on the head, running down on the beard, running down on Aaron's beard, down on the collar of his robe. It is as if the dew of Hermon were falling on Mount Zion. For there the LORD bestows his blessing, even life forevermore. Psalm 133:1-3” Simply put it is an anointing.

Thanks to those who gave through my story, we have collected $200.00 to go towards a cure for CMT. Because of your generosity the path may not be as long before a cure can be found. If anyone gave and I have not contacted you by Private Message would you contact me at, ellene55@embarqmail.com     and allow me to send you a thank you. I do appreciate everyone's comments, prayers and support. My son,  Joel will give a tally of what was raised through the shark tournament. Hugs You can still give if you feel led to at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge 

Sept 30 My CMT Journey continues.....

I didn't challenge anyone to an ice bucket challenge and the only suffering endured was reading my lengthy posts. “Thank You for supporting, and praying for a cure for Joel, my sister Patty, myself and all the other CMT sufferers”. My motives are threefold in sharing my journey with you this month. First and foremost is to encourage you if your prayers are not answered in your favor to not loose hope. It is so easy to want to give up on your faith. You may think if their really is a God why does He allow so much suffering in this world. To that I say, He is always with you. We are the ones who turn our backs on Him. He never promised life would be easy and He never promised He would grant our every wish. What He does promise is “Never will I leave you and never will I forsake you.” Deuteronomy 31:6. He sent us His son, Jesus Christ, to comfort us and His spirit to encourage us. I could never endure the hardships without my faith and hopes in my Lord. “What we suffer now is nothing compared to the glory we will receive later” Romans 8:18. Next is to get the awareness out there of what CMT is and how it affects us. Lastly to show what is being done for a cure and to request donations to expedite the process. To end my final chapter I have added the latest updates in research.

The seven stages outlined below provide more detail about the strategy and progress in drug development for CMT1A. Stages 1-5 have been completed or are ongoing, and stages 6 and 7 will begin soon after the completion of stage 5.

1. Develop Laboratory Models:The fact that the genetic mutations causing CMT can be replicated in laboratory models has opened an extraordinary window of opportunity to develop treatments for CMT1A.
2 Build Cellular Assays:With CMTA support, a series of drug-screening assays have been developed which are being used to identify and prioritize compounds that can reduce the high level of the PMP22 gene that causes CMT1A.

3. Screen the Cellular Assays with Different Pharmaceuticals:

4. Test the Candidate Drug Compounds in Laboratory Models:The CMTA has engaged a contract research organization, Psychogenics, to facilitate and expand drug testing in laboratory models of CMT1A. This capability expedites our ability to test several versions of a given drug type. It also helps us to collaborate with a variety of pharmaceutical partners that have candidate drugs to test so that we can test many candidates in parallel rather than one at a time. The laboratory models of CMT1A are being assessed to determine if the compounds change the grip strength, balance or sensory function in the model. These results will help us determine which compounds might improve common CMT symptoms while improving the underlying problems in peripheral nerves.

5. Test the Compounds for Dosage, Toxicity and Viability:For the four compounds identified in previous years, Dr. Michael Shy and the CMTA Centers of Excellence are conducting safety and toxicity tests for the most viable candidates. This is a major step required for eventual translation of these findings into clinical trials for CMT1A patients.
6. Conduct Pre-clinical Phase 1 Human Trials:A small group of strong, healthy people without CMT will take the dose of the compounds to test for human side effects and toxicity.
7. Conduct Pre-clinical Phase 2 Trials:Through the CMT Centers of Excellence, small groups of people with CMT1A will engage in pharmaceutical trials to understand the positive impact the drug will have on CMT. Once these trials are concluded and the FDA has approved the use of the drug, it can be delivered to the market, accessible to everyone with CMT1A.

I will occasionally update my blog so check back once in awhile if your curious.. I am truly humbled by the out pouring of love, encouragement and kindness you bestowed upon my postings. Thank you seems such a delicate word to end this post. But from the bottom of my heart I am forever grateful to you all. I love you and I pray God will bless you! P.S. If anyone gave towards research If you feel comfortable, could you let me know how much you contributed. I would like to tally up how much was given this month and post tomorrow. Hugs
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 MDAhttp://www2.mda.org/goto/CMTChallenge

Pretty Patty

Joel and I

Sept 29 My CMT Journey continues.....

One night while thinking of ways to get the awareness of CMT out there, I felt a nudge to tell my story. I am not one who comfortably shares about being disabled. I always wear pants to cover my leg braces and never posted pictures of my hands curled. Sharing my CMT journey with you has been both heart wrenching and healing. I made myself transparent in hopes that it would bring awareness and DONATIONS for researching a cure. I know of many disabled friends are judged because they don't look disabled or some days they can walk and on other days need a wheelchair. There are babies diagnosed at birth with CMT, others diagnosed as children. Some don't show symptoms until later in life as adults. Some can run and some can't even walk. Some of us use walkers or wheelchairs. Most wear leg braces. Some have breathing problems which causes life threatening conditions, “CMT affects the phrenic nerve (which innervates the diaphragm) and the recurrent laryngeal nerve (which innervates the larynx)” (CMTA Fact sheet Breathing problems). Some can lift weights. There are those who live a very functional life and unfortunately others who die way to young. Some work while others are on disability. This disease affects each of us differently. But we all share a common bond in that a cure be found soon and progression to stop." What is faith? It is the confident assurance in what we hope for is going to happen. It is the evidence of things we can not see yet." Hebrews 11:1 Researching a cure has come far in the last fifty years since my diagnosis, but we still have so much further to go. I pray the day will come soon that the use of leg braces as the only treatment would be old school. I believe researchers will be able to find a drug that helps stop the progression and cure or prevent our children and future generations of having CMT. If I didn't see any signs of hope for a cure I would not have shared my story or worked hard at finding funds to quicken the process. . “As of now there is no cure. Drug discovery and development is never easy, but the CMTA STAR program has identified new approaches and even new opportunities and partners, and is on the verge of having approved drugs that could be appropriate for use in laboratory models of CMT1A and clinical trials for individuals with CMT”. (CMTA Charcot-Marie-Tooth Association - STAR - The CMTA Strategy to Accelerate Research Neuromuscular Medicine) Please take the time to view this video and hear of others stories and the breakthroughs with CMT? Star Charcot Marie Tooth disease video http://youtu.be/7Ow7f_UFX6o 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

Casting and measuring
feet for braces

Finished product all
 taped and ready to
ship out

My Braces

September 28, My CMT Journey continues......

I need a lot of help from my family. I want to thank my husband Doug for doing all the cooking, shopping and some of the chores around the house. To my son and future daughter in love, Joel and Sara, thank you for always being available when I need you, for those Sunday dinners and lots of hugs. To sister's, Patty and Laura, for helping me with all my needs in getting in and out of places and taking me to all my errands, you have become my feet. To my brother Ed and my sister in law Angie who have become my hands when I am unable to do things. For Angie's laughter in bringing sunshine into a room. For her help with fundraiser and medical alerts. To all my friends who have held me up in prayer and have been a tremendous support. My cousin, Debbie, who helps me when I need her. To my nephews who bring me joy. To my niece, Christine and her children for their support and love. To my precious grand daughter, Princess Zaniya, who brings out the child in me and the comfort of her love and hugs. It hasn't been an easy transition and I haven't been the gentlest of souls. So before we come to the end of my journey and as I am trying to become as transparent and real as I possible can, I must share the ugly side of me as well. I have whined, cried, snapped, cursed, and had pity parties. I said things that were unkind and I may have taken my loved ones for granted. To all those whom I have hurt, I say with all sincerity,“I'm sorry”. It has been difficult to work as hard as I did and not see results. I have taken my frustrations out on those closest to me. I threw guilt and bitterness around like flies on rotten fruit. It has become a spiritual battle of good and evil. In having been active in helping others in need and with church related activities it was hard for me to be on the receiving end. Many times I sat alone and sad as life revolved without me. Everyone was busy with work, families, vacations and ministries. I even had to refrain from facebook at times as it was hard to see others enjoying life. I tried to take the last three years of my life and produce good fruit as well. I memorized Bible verses that bring me hope. Late at night when I can't sleep and I become emotional I recite from memory my comfort of hope. I sleep well. I am learning a new way of life. I see adventures but not as before. It will be a learning experience but it will be exciting. I will have to find different ways to get around. Does it matter if we walk, run or use a scooter? When we get to our place of destination, how we get there is not as important as getting there. On a CMT Facebook page someone asked a woman of maturity what her secret was in living a fulfilling life with CMT, her answer went something like this, “I get up, I get dressed and I get out”. I am looking forward to this new chapter of my life. Perhaps next year I'll share a different journey with CMT. I love my family and friends. I am looking forward to lots of shared adventures with you all. “The rain and snow come down from the heavens and stay on the ground to water the earth. They cause the grain to grow, producing seed for the farmer and bread for the hungry. It is the same with My word. I send it out and it always produces fruit” Isaiah 55:10-11. 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

The next generation 

Fun times with family

Love my family

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