In my mid to late 40’s I began to experience strange symptoms – mainly crushing fatigue, dizziness, and nausea – this was diagnosed as IBS, and I was instructed to begin a healthy gut diet. The symptoms continued on and off for the next few years. When I turned 50, I noticed I had trouble signing my name and typing and had the keyboard on my computer changed twice believing it to be faulty, before I realised I had developed a generalised weakness in my right hand and arm. At this time, doctors believed it variously to be a frozen shoulder, a pinched nerve in my neck, or thoracic outlet syndrome! The general weakness in my right hand and arm continued despite treatments and I also began to experience a strange rigid or flat sensation in my right foot which affected my gait.
I was finally referred to a neurologist at 52 who diagnosed early onset Parkinson’s, telling me matter-of-factly that I could expect to be in a wheelchair within 10 years and unable to care for myself. (If he could see me now !!!!)
At that time tho’ my world was rocked to its very core – I was bewildered, frightened, and totally confused as I had always been healthy, active, and very sporty (gym, swim, run, ski, surf, basketball, yoga, bushwalk) etc, etc, etc… – I had 3 teenage kids of my own and two step kids, was working full time in a demanding HR Director’s role and did not have time for Parkinson’s! I did my best to quell my gut-wrenching fear and simply carried on. I started Madopar medication 3 times a day, which adequately masked my symptoms and enabled me to hide my condition from others, but mostly from myself for the next 5 years, as I sought refuge in denial. I partied hard, drank heavily, and avoided anything that suggested I was slowing down or giving into my Parkinson’s, ending up totally exhausted, highly anxious, and depressed!
I moved to permanent part-time work and changed neurologists at this time. I shopped around until I found one that was both cutting edge and pragmatic, a realist but not a doom’s day-er, and importantly up with the latest research and developments. I was referred for specific PD counseling and found that very helpful to manage the many emotions surrounding my diagnosis. I was finally able to tell my kids what was going on with mum, as well as make vital plans to ensure we lived our lives fully and well and made the most of my mobility whilst we could.
My husband and I decided to move to a warmer climate just south of the lovely Byron Bay Australia and semi-retired in late 2020. A local physio told me of PD Warrior, and I was intrigued. I had long felt that although I exercised regularly, I was not sure what it was doing for my specific PD symptoms. I have found the combination of education, motivation, the 10-week PD-specific exercise challenge, and the group support of others via PD Plus, genuinely life-altering. For the first time, I feel I have back some of the power and control that Parkinson’s took from me around 10 years ago. Tho I don’t shout my Parkinson’s from the rooftops, I have accepted its presence in my life and no longer deny its effects. I now take Madopar 4 times daily along with Azilect, and a host of vitamins and PD-specific nutrients, as well as slow-release Madopar at night to combat restless legs and acting out of dreams. My husband and I both get some quality sleep now!
I turned 60 last November and welcomed my first grandchild 18 months before that!
My long-term challenge is to dance at my granddaughter’s 21st birthday – some 19 years away, as well as travel across the top of Australia from Cairns to the Kimberly’s – my husband and I have recently completed a trip through outback Queensland, SA, WA & Vic in our van with our new springer spaniel puppy and cat! We also plan to live in Spain for 3 months, tour Egypt and Thailand, see the Rwandan Gorillas, ski France and Italy, and LOTS MORE!
Thank you sincerely to PD Warrior for enabling me to continue to embrace activity and life!