Charcot Marie Tooth Disease is an unpredictable, progressive disease which deteriorates the nerves that connect the brain to the muscles and causes the muscles to weaken. It is the most commonly inherited neurological disorder affecting 1 in 2,500 people. I was diagnosed at age five.
Childhood meant countless doctor and hospital visits, leg braces and corrective surgeries to perform ankle fusions, tendon transfers and bone grafts. My symptoms worsened considerably in my 30s and 40s. My balance has been affected and it’s challenging to safely walk across the room. I’ve had three falls resulting in broken bones over the past seven years alone.
Daily I deal with considerable pain, numbness and instability, along with fear and uncertainty of what my future holds. My disease has progressed so far that I now must use a mobility scooter or motorized wheelchair to move around. Accepting this has been very difficult because I feel like I’m losing my sense of self. Fighting heavy depression has been a constant over the past few years.
I deal with accessibility issues on a regular basis. I can no longer climb stairs, and I’ve had to make modifications to my house like adding a ramp to my front door, grab bars in the bathroom, and moving our bedroom and home office to the main floor. Little things like replacing clothing without zippers and buttons is something I’ve also had to change as my manual dexterity has grown worse.
I struggle with the fact that I am now home bound and dependent on others if I want to leave my house to access my yard, run errands or go to appointments. I gave up driving when it became too dangerous because I could no longer get my foot from the gas pedal to the brake safely.
Even through all of this, I have not given up.
CMT has taught me many things: the need to be resilient, to remain positive, to look for creative solutions to challenges, and to be humble and ask for help when needed. It’s taught me the importance of family, friends, and community, and it’s enriched me with a deep sense of empathy and compassion.
Two years ago I furthered my education and became a permaculture designer to compliment my husband Geoff’s forestry business. Together, we are building an eight acre food forest complete with fish ponds, fruit trees, nuts, berries, medicinal plants, handicap accessible trails throughout, raised garden beds, and eventually, an off-the-grid greenhouse. Our goal on this site is to harness and slow water and build nutrient dense soils that can provide us with the healthiest food possible. Part of our business plan is to open the site for tours and use it to educate others on what can be done in this Zone 4 cold climate. This expansion of our business, however, cannot happen without me being able to access the land.
Last year, I became certified to drive with hand controls. I look forward to being able to get out to job sites for clients where I can continue designing perennial food systems and educating people who want to live with a deeper connection to the land.
To do this, I will need a motorized all-terrain model wheelchair as well as a handicap-accessible van equipped with hand controls. This will also allow me to drive myself to medical appointments, physical therapy and run errands.
I’ve contacted every agency I know, but these organizations only have resources to serve a fraction of the people in need, and I’ve run out of options. I’m watching my independence and hope slip away, and this fundraiser is my last resort.
I’ve done extensive research and have been working with Muscular Dystrophy Association and Michigan Agrability to fit me with the proper and adequate equipment. They agree that the combination of an all-terrain wheelchair and accessible van with hand controls WILL reestablish my independence. Any amount that you can donate will be greatly appreciated.
Michigan Agrability and Easter Seals have offered to match the first $1,000 raised.
To help, to donate or for more information, please visit and share: https://www.youcaring.com/susankegerreis-703943
More about CMT https://www.cmtausa.org/understanding-cmt/what-is-cmt/