The battle rages on for two Canadian women who have been a source of inspiration for hundreds and even thousands of people stricken with Huntington's Disease and Juvenile Huntington's Disease, as well as their families and caregivers.
For them and their families it has not been without bombshells and explosions of fear and intense emotion, the likes of which they never knew or admitted they may encounter.
Many might wonder why they don't just roll over and give up the fight, resigning themselves to what many people say; that their quality of life just isn't worth hanging on for.
Erin Wade, 26, of Brockville, Ontario, and Sheila Jess, 59, of Wolfville, Nova Scotia, don't look at life that way. Instead, they embrace it and all that it has to offer, even if they have to tweak it a bit, or in their cases, a lot.
What makes Huntington's Disease so horrid? Imagine having the symptoms of ALS, Parkinson's Disease and Alzheimer's Disease all at the same time and you might be able to imagine just a little of the horrors of this disease. And in Erin's case, having Juvenile Huntington's Disease also means having seizures as well as an accelerated rate of decline.
Many choices have been made by these women over the years; choices that are not easy, and for many in the Huntington's community are simply out of the question, choosing instead to let nature take its course, fearing what might lie in the future for them or deciding that enough was enough.
For both Erin and Sheila that has not been the case. Every time their disease progressed both have had strong opinions and determined that they would take another step to possibly improve their situation, to buy time, to experience something else.
One of those choices was to begin trying CBD oil. Neither Cindy Moore (Erin's mother and President of WeHaveAFace Canada) or myself knew even what the dosage should be but we figured it out and very quickly saw the benefit. It improved their lives immensely in regards to motor skills and talking among other things. Both women at the time were facing a severe change for the worse, with Sheila being placed in palliative care. But not for long. Within a few months she was no longer palliative and was able to move into a long term care facility where her life would begin again.
Erin, since then has remained at her home with her family where she enjoys a busy household.
It was at this time as well that another decision had to be made for both women. Swallowing was a problem or near impossible in Sheila's case. In each case both women decided to have a feeding tube.
For many people the idea of a feeding tube is, for some unknown reason...repulsive. Frankly, it is not. These women and many like them, see a problem, and they decide to find a remedy. Both of them blossomed from proper nutrition and have been able to enjoy life in many ways. Sheila got to meet her new granddaughter, Sadie. That would not have happened if it weren't for the feeding tube.
In the past few weeks, both Erin and Sheila faced serious issues and were in and out of hospital, both coming very close to no return. Erin has returned home, Sheila is still in hospital recovering from surgery and the inevitable complications, but she fights on.
I don't know why they both seem to have this scrappy will about them, so I can only surmise as to what makes them want to continue. I think it's having something to always look forward to, they simply don't want to miss out on anything in the future. They still look ahead in wonder of life, and they still relish it and find joy everyday.
Or, it could be simple philosophy. As Sheila puts it, "there is no dignity in death. There is only dignity in the fight for life."