Last December, our mom woke up with a dizziness that she had never experienced before. At first, she thought it was just vertigo, but the symptoms were different. She said it was like walking in a bounce house, but the bouncing was constant and wouldn't stop.
A few weeks passed... then a few months... and the bouncing still continued. Early on, we had no idea what it was. With her vision seemingly effected by the symptoms, you can only imagine where our thoughts went... could it be neurological? Some sort of cancer or disease? We had no idea. We just knew we needed answers. A few months ago, she came across a couple articles that talked about Mal de Debarquement Syndrome (MdDS), which is an "imbalance or rocking/swaying sensation often both "felt" and "seen" by the sufferer that occurs after exposure to motion." Many people who suffered with MdDS had been on a cruise or flight, and were never able to get their "land legs" back. This wasn't the case for our mom, but all of the symptoms matched.
Quick background on what her days consist of. The bouncing starts as soon as she gets up in the morning, and lasts all throughout the day. When she's walking, standing, or sitting in a normal chair—the bouncing never stops. The only time she gets relief, is when she's in a glider chair or riding in a car. Every day, she works in a classroom with kids who have learning disabilities... which is a difficult task, but not enough for her to give up on being there for her students. She had us put a glider chair in her classroom to make it possible for her to sit and read to her kids, while getting a little break from the bouncing. She also has a hard time in crowds of people because of the movement and noise, so sporting events and social gatherings have become very challenging for her to attend...(but that doesn't stop her from cheering on the Mountaineers when she can). This condition is not only physically dibilating at times, but emotionally as well. Anxiety and stress have been prevalant in her journey with MdDS. The greater the anxiety and stress, the more heightened her symptoms become.
After visiting a couple different doctors (who were puzzled by her symptoms), she was referred to an ENT who officially diagnosed her with MdDS in July of this year. Having someone who was at least familiar with what she was experiencing was a bit of relief. The ENT doctor gave her vestibular exercises to do, but informed her that they were not always effective in treating MdDS cases. Unfortunately, they didn't help at all.
Nearly 10 months have passed since the symptoms first started, and we just came across a recent case-study involving GyroStim, "a computer controlled multi axis rotating axis chair." The case-study was conducted at Avora Health in Asheville, NC. Cindy, a 60 year old woman who had been battling MdDS for more than 10 years, was willing to try anything to get her life back. She reached out to Avora Health to see if she could try GyroStim to treat her symptoms of MdDS. Since they had never used that system for MdDS before, they wanted to do a case study to track and record her progression. After two five-day sessions, Cindy is now in full remission for the first time in 10 years. You can find the full story here: https://rockinginthewind.blog/2017/05/07/gyrostim-project-for-treatment-of-mdds/ or http://www.avorahealth.com/mdds.html
Since Cindy's case-study was released, people have been flying in from all over the world to give GyroStim a shot. After speaking with one of the coordinators at Avora Health, we were told that this treatment has proven to be effective for dozens of other MdDS cases as well.
After reading Cindy's powerful story, we tracked down her phone number and gave her a call... and to our surprise, she answered! The hopeful tone of the conversation, and Cindy's willingness to share her story, led us to where we are now. We're looking to raise funds for our mom to travel to Asheville, NC and get the same GyroStim treatment at Avora Health. This specialized form of treatment, along with physical therapy, and other testing is typically two weeks long, and is not covered by insurance. The funds raised will be used to cover the cost of the treatments, as well as traveling, food, and lodging expenses. In addition to GyroStim, the funds will also help cover the costs of a CT scan and MRI to hopefully rule out any possible neurological issues. She will also likely miss work for an extended period of time.
For those of you who know our mom, you know how strong her faith is. You may also know how difficult it is for her to be vulnerable and let her struggles be known. On top of MdDS, she has also been suffering with frozen shoulder in her right shoulder since April, which is stress-induced (and un-related to MdDS), but very painful. Needless to say, it's been a rough year for her. But her faith in Jesus and love for family and friends have kept her going this far...and she's not giving up now!
As a family, it's been extremely hard on all of us to watch her go through this, but we've never lost hope that God hears our prayers and can heal her whatever way He chooses. We trust Him to carry her through!
Would you prayerfully consider giving financially to make this treatment possible? Our goal is to have 100% of the funds raised by December 1st of this year.
If you're unable to give financially, please pray for strength and healing in her body to be able to BEAT MdDS!
We appreciate all the love and support.
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