About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, February 16, 2018

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.

1 comment:

  1. My dad was diagnosed with Parkinson’s disease.his symptoms were shuffling of feet,slurred speech,degradation of hand writing, horrible driving skills, right arm held at 46 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he was having trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which really helped him a lot,the biggest helped we had was ultimate life clinic they walked him through the proper steps,i recommended this http://www.ultimatelifeclinic.com to anyone who also needs help.