Growing up, I was a very active person. I was a gymnast, cheerleader, and swimmer. I loved camping, hiking, and climbing trees. After high-school, I attended college to become a veterinary technician. Shortly after graduating from college, I married my best friend, David. We have four amazing children. When our oldest graduated from high school, I decided to get a degree in nursing. Nursing school was difficult, but I loved it. I was the oldest person in the nursing program, so all of the other students affectionately called me “Mom.” I was still working full time as a vet tech in an emergency hospital during the overnight shift. I attended school from 7am to 3pm, picked up my kids from school, made dinner, did my homework, then worked from 6pm to 2am. Went home to sleep a few hours, then did it all over again. My weekends were devoted to studying, spending time with my family, and sleeping. I did this for two years. I somehow graduated as valedictorian. After nursing school, I started working as a nurse in Assisted Living and Memory Care facilities. After just one year, I was promoted to Resident Services Coordinator. Six months later, I became the Health and Wellness Manager of the facility.
Just four years after becoming a nurse, I started having physical problems. I couldn’t stand from a squat, and I was winded climbing a flight of stairs. I worked 80 hours a week, and wasn’t eating well. I figured it was due to years of stress and inadequate sleep. With a major surgery coming, that would require 6 weeks of recovery, I had to stop working. After recovering from surgery, I started looking for nursing jobs again. Though I had multiple offers right away, I found myself dreading returning to work, and the stress that came with it. Wanting to improve my health and reduce stress, we moved to a 5 acre property to start a farm. We raised our own chickens, turkeys, and cows for all of our meat, eggs, and dairy. We joined a gleaning group that allowed us to go to nearby farms after their harvest, to pick up anything the machines missed. All of that produce was canned or dehydrated to enjoy all year long. I prepared all of our food from scratch. I knew everything that went into our food, down to what the animals ate.
When I started farming, I could lift a bale of hay, a 50 pound bag of feed, or a 7 gallon bucket of water. Even though I ate well, had a regular sleep schedule, worked hard, and was the happiest I had ever been, my physical health continued to decline. After one year, I started falling. After talking to family to find out what kinds of health issues ran in our family, I heard the term Myotonic Dystrophy. I didn’t know what it was, they hadn’t taught it in nursing school. I started to research it, and found that the symptoms matched what I was experiencing. My doctor ordered genetic testing and confirmed it. I was diagnosed with Myotonic Dystrophy, type 2.
Myotonic Dystrophy is one of more than 30 different types of Muscular Dystrophy. It is a progressive, degenerative, neuromuscular disorder. This is causing my muscles to atrophy. Not just skeletal muscles, but heart, digestion, breathing, swallowing, eyesight, every muscle in my body is affected. There is no treatment or cure, we can only manage symptoms. It affects everyone differently. In some only a few muscles are damaged, or it has a very slow progression.
For me, the progression has been rather rapid. Five years ago, I was working as a nurse. Four years ago, I became a farmer. Three years ago, I started having falls and difficulty climbing stairs. Two years ago I started using a walker full time. One year ago my medical team decided that, for my safety, I needed to start using a power wheelchair. A power wheelchair was custom built for my physical needs. This wheelchair cost over $32,000, and took 8 months to build. We were fortunate that my insurance covered the cost for the chair. Having a power wheelchair means that my house needs a ramp, and we need a vehicle with a lift. Currently I use my wheelchair in the house, and a portable scooter if we need to go anywhere. My doctors are concerned that I do not have the core and neck strength required to use a scooter safety. Our only vehicle is a truck that my husband has to lift me, and the scooter, into and out of. Wheelchair accessible vehicles start around $40,000 to well over $100,000. Ramps for our house are $5,000-10,000.00. As my symptoms progress, I will need more medical equipment, medications, physical therapy, a full time caregiver, and eventually will need to move to a single story home. My insurance will not cover these things, and they are much more than we can afford. To raise money to help pay for all of this, we are contacting family and friends, organizing fundraisers, and reaching out to organizations that provide grants for disabled people.
We are raising money for the nonprofit Help Hope Live to fund a wheelchair van, a ramp, and other uninsured medical expenses associated with Myotonic Dystrophy.
We have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
Please help us raise the funds needed for my continued care. Whatever you can afford. Those small amounts add up! Thanks for your help. We really appreciate it.
Signed,
Juniper and David Riddle
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
