Blogging Again!

I stopped blogging for the simple reason, I was deteriorating at such an alarming speed, I thought who in their right mind would want to read this? Who would want to know what I was going through – not really living, but hanging on by my fingernails, surviving each painful long day and suffering hellish nights I thought would never end. My body no longer responded to my medications and Parkinson’s had turned into an unpredictable demon, sapping my energy and causing pain that ravished my body. Doctors and nurses had seen all-consuming pain and suffering in Cancer patients and other chronic disorders but had never treated a woman in her fifties with Parkinson’s and Gaucher in such a terrible advanced state. If there were such a thing as a ‘pain scale’, my reading would have been way off the charts.

I used to be a very fast typist, but now use one finger so it takes forever to type even the shortest of blogs. So please be patient as I recount the events that took place. What I will be writing is without doubt disturbing, and may be hard for you to read, but I urge you to read on, for there is a lot of information, should you need it that could prove helpful. I would like to remind you that I am not a doctor or have any medical training. I am merely a patient sharing my experiences and story with you.

I never really questioned anyone what the difference was between a 'Neurologist'  and a 'Neurological Movement Disorder Specialist'. The term "movement disorders" refers to a group of nervous system (neurological) conditions that cause abnormal increased movements, which may be voluntary or involuntary. A movement disorder specialist is a neurologist who has received additional training in Parkinson's disease (PD) and other movement disorders including Essential tremor  (ET), dystonia, tics and tremors. 

I had been going for 11 years to the same neurologist, who is highly regarded. It had never occurred to me that perhaps I should get a second opinion from a 'Neurological Movement Disorder Specialist'. You may be thinking “Well I know that” and in hindsight, I don’t know why this option was never explored. Foolish as I may now seem, to have not inquired before, all I can say is “better late than never”. So, if you too, have not been seen by a Neurological Movement Disorder Specialist, it may be worth your while checking this out. You have nothing to lose and everything to gain.

My father who was a carrier of Gaucher disease, had PD. I also had a brother, who like myself, suffered from Gaucher disease and PD who died a few years ago. From the time of diagnosis, my father and brother went downhill and passed away at an alarming speed, not only was this a shock to the family, but also the doctors. Although my family medical history did not bode well, I strongly believed my case would be different. My father and brother were pessimistic by nature, seeing the glass half empty, where as I am a very different character, always positive who sees the cup half full. I strongly believe that one’s outlook on life can have a remarkable effect on the severity and speed of progression.

My husband has made coffee and beckoning me to the table, so I'll leave you for now and wish you good health and an enjoyable weekend.