My journey so far with Parkinson's disease (PD). Aug/21
PD and Me at 72.
How long have I had PD,? Who knows?
I think everyone diagnosed asks the same question. To answer this question for me, was it when I had dry eye about 4 years ago, was it when I lost my sense of smell about 5 years ago, was it when I noticed a small tremor for the first time in my right thumb about 5 yrs ago. The answer is yes to all of them, other indications prior to my official diagnosis in 2019 were drooling, constipation, shoulder and back pains and I am sure more symptoms than those but I can't remember.
The single most frustrating thing about being diagnosed with PD is the sheer ignorance most of us have about this disease, I thought if I have a shaky hand, I can live with that, then a little research and one's whole world collapses..
While getting the results from my annual blood tests my MD suggested I make an appointment with a neurologist, she had a father with PD and was sure that was the cause of my tremor. Going forward from there was when the nightmare began, not with the diagnosis but firstly with the manner of how I was treated. In a nutshell,'' Mr B, you have Parkinson's disease, here is a prescription, Azalect, come back in 3 months and we will add another pill C/L to your prescription.''
I remember vividly sitting in the car park of the hospital wandering what had just happened, I was unaware I had just been told I had a degenerative brain disease with no known cure and very possibly will end up in a wheelchair with dementia . So, I filled the prescription, 3 months pills for 300 euros and went home, still completely ignorant of my diagnosis, with the intention of learning as much as I could as quickly as possible.
During the past 3 years a lot has happened, my learning about PD has involved, I could safely say, 2/3 hours a day, every day of research for months on end, still ongoing. Coming to terms with the fact that the pills I was taking were slowing me down, making me tired and sapping my energy and were doing nothing to slow down or stop my PD..I stopped all medication after 3 months and I have not been back to my neurologist since.
Learning from others around the world, groups, forums and universities has been my life since my diagnosis, trying many supplements, exorcise, special Keto diet, red light and changing routines, It is an ongoing situation, learning to cope with stress and trying to avoid it, a must for PD sufferers and drawing on the strength and support of those friends close to me on a day-to-day basis. This is a journey that if to be successful for me and in retaining my sanity cannot be done alone.
Looking back, I have learned not to be upset or embarrassed by things that happened to me in the past before I was aware of my PD. I wish all early-stage sufferers knew this, the attention deficit, the fact that the feeling of frustration and/or depression sometimes leads to one's mouth taking over control of one's brain and this can lead to unfortunate situations. I am lucky in that I largely have this under control but hold a certain resentment towards those who could have understood a little better and could have been more tolerant, I did not hide my diagnosis from anyone. This single piece of advice came from my MD and I continue to follow it. Trying to hide the disease can cause more damage through stress.
Where am I today? The disease is progressing, the fight is continuing, I think and I am sure my positive attack on PD is helping. I have tried to help other people like myself through my own FB support group locally as I feel I can offer some light to others and this has born some fruit..
What does the future hold?, A mystery, the disease will progress, how I respond and how it affects me? I feel I have a small amount of control over this, my constant learning routine keeps me up to date with all the trials going on around the world, the fact that a medication first used in the 1960;s is all we have today to help with symptoms is not encouraging but the rate at which PD is progressing around the globe is now bringing more people and pharmaceutical companies to become interested in serious research.
The above is a short history of my PD journey and on many sites, I have written in more detail some of the events, I hope this is some help and thank you for asking me to write this.
Diagnosed today, seeking for help
Smoking
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WHY do (some) doctors want to KEEP US SICK???
Body pain not a symptom of PD?
