“I had gained weight and I was at an all time low… I needed to go in another direction… My aim is to have fun and enjoy my new lease of life while it lasts…” – Tracy White.
Tracy White is in her late forties and is a wife and mother of six. Tracy has Young Onset Parkinson’s Disease. I came to know Tracy White in late 2017. We had both joined a Facebook based support group for people with Parkinson’s and, by twist of fate, we both ended up volunteering on the team that facilitated the group. That was the start of our friendship.
It was early the following year, that we left the original group and decided to set up a new group, which we called Parkinson’s Road. After almost two and a half years, Tracy has just stepped down from her role as Team Leader of the volunteer team; known as the Admin Team, for Parkinson’s Road. I decided to interview Tracy for an up to date look at where she is in her Parkinson’s journey. I asked Tracy to tell me about her treatment for Parkinson’s.
“Since my diagnosis, my medical care was not up to standard.” stated Tracy, with a tone of frustration that was palpable. “It is now 2020 and I had not seen my Neurologist since my diagnosis in mid 2015. My only care had been via a Parkinson’s Nurse until October 2018. Then there was simply nothing. I waited for months but no contact or appointment was made to me. I decided to phone the hospital and that was when I was told that the Nurse had left her role.”
I could see the look of incredulity on Tracy’s face, as she recounted her worries, fears and concerns at the sheer lack of Neurologist guided treatment she had received in her home county of Lincolnshire. As a Parkinson’s patient, myself, it was clear and easy for me to recognise the risks this lack of care had placed upon Tracy’s well-being. I also understood Tracy’s sense of anxiety about her symptoms and how the lack of care had potentially exacerbated her challenges.
“With the support of a friend, in neighbouring Nottinghamshire, I was able to explore and seek a referral to the Queen’s Medical Centre in Nottingham. I had gained weight and I was at an all time low. My symptoms were bad. I had decided to help myself. I needed to take control of my life and so I started eating a healthier diet and exercising daily through walking. Having battled the severe weather of the winter season, my husband bought me a second hand treadmill and this became a life-changer, for me.”
I could see the change in Tracy, as she started to recount this new motivation to get on top of her health problems. She became more animated and her face seemed to light up.
“From March, the weight I had gained began to fall away. I started to see and feel the benefits of exercise and it felt great. Despite how good this aspect of life was starting to feel, I was aware that my Parkinson’s symptoms were still bad and that I was getting slower and slower. Parkinson’s is a movement disorder and the disease, which is neuro-degenerative, causes a gradual decline in your motor skills. To my excitement and relief, in May 2020, I was offered an appointment with my new Neurologist.” She continued. “My first appointment was over the phone; given the situation with Covid-19. What a new experience this was for me. A Neurologist who cared and listened. He discussed my treatment options and reviewed my medication; finding that I was severely under-prescribed for my worsening symptoms.”
Again, I could see an expression of relief on Tracy’s face and the tension in her demeanour shifted to one that was far more relaxed.
“The subject of Deep Brain Stimulation surgery arose. That is something I may well consider, at some point. I don’t feel that I am there yet. Since the appointment, and since starting my new medication regime, I feel like my old self again. I am exercising; using weights to develop my upper body and I am able to dance a little more than before. Mornings are still difficult, until my meds kick in. I still wake up with muscle rigidity and slowness but once my meds kick in, I’m good to go. I know I’m in what is commonly called ‘the honeymoon period’ in relation to the efficacy of my meds, but I’m enjoying this, as for five years I have struggled.”
I asked Tracy to update me about her volunteering work as Team Leader within Facebook based support group, Parkinson’s Road.
“With this new me, came changes. I noticed I had been spending less time working on Parkinson’s Road duties and, on 14th July, I decided to step down and leave the group. I loved my time as Admin Team Leader and I’ve made long lasting friendships, but I was changing and I needed to go in another direction. I had found the structure of the Facebook based group increasingly restrictive and I had wanted to be more creative. I wanted to operate from a setting that enabled me to produce material that was more fun, creative and interactive. I want to be able to encourage others to share more about the creative, active and positive aspects of their lives. I want others to be able to share more about all aspects of their lives; not just those relating to Parkinson’s. I want others to be able to discuss topics on any subject, without restriction. This is why I have co-founded a new community forum called Focused Friends.”
It is actually me that is the other co-founder. Tracy and I had co-founded Parkinson’s Road and this, Focused Friends, is our new creation. I smiled and understood fully what Tracy had described. I asked her of the future.
“My aim is to have fun and to enjoy my new lease of life while it lasts , so buckle up and watch this space because it’s going to be one hell of a ride. I’m sure there will be bumps along the way but come and follow Focused Friends at our web site, our Facebook page, at our You Tube channel and at our various social media sites. Focused Friends is not a support group. However, there, you will be able to follow me and Deano, as we share our friendship and our journey through life with Parkinson’s. We hope that others will share something of their own journeys through whatever challenges they have, too.”
You can find Focused Friends, and links to Focused friends on social media, at:
© Deano Parsons. 2020.