After Easter dinner my younger brother Danny, age 50, came to me on the verge of tears to explain the difficulties he's having as a result of the progression of his neuro-muscular disease. He is not only having more neck pain and body aches, but increased loss of dexterity, muscle control, and muscle fatigue, resulting in more difficulties in writing, walking and feeding himself. He's also extremely frightened as to what the future holds. The memory of the living hell that our older brother endured is still fresh in our minds, even though Fred died almost four years ago from complications of the same disease.
My father unknowingly passed onto Danny and Fred the same disease that his father had (although it was undiagnosed at the time). Dystonia Musculorum Deformans developed in both of my brothers before their teens and got worse with age. It was more pronounced in Fred and he was affected more severely. Being a neurological disorder involving the muscles, some of the symptoms are similar to MS, but typically involve more twisting of the torso, tremors and shaking. Among other things, Fred lost the ability to speak as a teen. In his mid 40s he underwent cervical reconstruction surgery which saved his life but left him a quadriplegic. Having witnessed the hell that was Fred's life for the 11 years before his passing, I still can't appreciate the misery and frustration that was his existence. Stop for a minute and try to imagine life with a body that does not work, no effective means of communicating, but yet possessing a fully functional cognitive ability.
No one in our family was capable of caring for Fred those final years and had it not been for an angel named David who took him in and provided the constant care he needed, he would have wasted away in some cold and uncaring facility at the mercy of an overworked staff. I can't blame Danny for being afraid of the future. With my degenerating back issues and chronic pain, I'm afraid too. But I have a loving wife and children to look after me. Danny is single and on his own.
My brother and I will not be helped by SB3 (in its current state). Our conditions were among those that were cut by amendment when SB1182 was debated and passed by the PA Senate last fall. By its very nature, a list is destined to exclude someone. In the case of qualifying medical conditions for medical cannabis, many someones. Conditions deemed acceptable for treatment with a plant, generated by politicians rather than doctors is a shameful way to determine whose health takes priority. The decisions on who to provide cannabis to and how to best administer it should be the purview of medical professionals.
Our Legislature is also resistant to allowing cannabis plant material to be used. No state that has adopted a medical cannabis program has done so in a perfect way. But of the 23 states and the District of Columbia who've adopted a medical cannabis program, only two do not allow for plant material to be used. In New Jersey, plant material is essentially the only option for those patients. A medical cannabis program that does not allow plant material is a paradox. I need you to fight for us and the countless others who may not have the voice to do so. I need you to not accept anything less than a bill that covers as many sick and suffering PA residents as possible, and that allows those patients to use the cannabis plant as they and their doctor sees fit.
I've read how medical cannabis can help people with Dystonia in managing their symptoms, especially muscle rigidity, spasms and tremors. That, in turn, reduces pain and muscle fatigue. Beyond reading about it, I've met people with Dystonia who use cannabis for those symptoms and others. One in particular uses it illegally in PA, but since he lives in Philadelphia, where possession of small amounts of cannabis have been decriminalized, he feels comfortable enough in doing so. It's far from a perfect scenario for him, in that he still has to rely on the black market to get his medicine. And as soon as he leaves the city he's back to the reality of a state that still condemns people for possession and use of a medicinal plant.