Dec 18, 2009
I knew I had missed something. I had always seen my mother light the Hanukah candles since I was a child and say the recitation/prayer but this year I had not. But today was the last day of Hanukah. And I visited her. And for an important reason as I was seeing my neurologist who is a movement disorders specialist. And it was the first time he had seen me on the Vimpat. And he was quite satisfied with the results (remember this is the literal first time it has been used for people on dystonic spasms). And with my uncle who is a researcher having found the original animal research online and me presenting it to my neurologist and psychopharmocologist months ago and working to document the neuropsychiatric aspects of tardive (they both were handed a seperate case write up today, its just become part of how I do things, it helps documents unknowns that cannot be objectively noted), in many ways it was a group effort. And Monday I will be going to my psychopharmocologist who is noting the mood stabilization effects (again a literal first). But there has been much unhappiness in the family. My aunt just found out she has insulin dependent diabetes. My grandmother is alone in the house (with my grandfather having passed on months ago) and can be unsafe at times physically. And I was denied for many accomodations I need for my physical safety. My mother was having trouble adjusting to the idea of treatment for cyclothymia (mild bipolar) and discontinued treatment. So there was much emotional stress today. But as the Hanukah candles were lit for what was the last time this year and were almost burning out and my mother was a bit distraught I pointed out to her "Think about it. Remember the meaning of the candles. Its about survival. We have to unite and work together. All of us." and she said "I never thought about that." Perhaps it was time to. Well my aunt is taking proper steps towards living with diabetes (seeing a nutritionist and endocrinologist). My mother agreed to take my grandmother to her neurologist to be evaluated for a home attendant (I will be helping out with the pragmatic aspects and research) which is the first of many steps. We will be working to have a lawyer assist me as regards the accomodations. And she agreed it made sense to go back on treatment. But her recovery is her life.
My recovery is mine. But as I explained to my neurologist as the Vimpat was being adjusted I had one near death episode from dysphagic choking spasms and dissociation/dysphoria what they are categorizing as tardive dysphrenia. I knew to immediately take the prescriptions but I took the Vimpat first (to see how its effect was specifically) and as it was efficacious on all aspects of what it was treating. So this is the first use of it for dystonic spasms. The first use of it as a mood stabilizer. And the first clinically noted case of tardive dysphrenia (a very specific clinical criteria that was inconclusive until myself). So out of a very bleak darkness came a very real light and new paths towards recovery. And what they do to help others will be their decision. But if I hadn't advocated for treatment those paths would never be open. Hope may often seem distant but at all times it must remain alive and the more you strive for it for yourself and others the more lives you will keep out of the very real darkness of this time of year.