So, there I was 3 months pregnant with a much wanted second child, having a hot chocolate on the side of a snowy mountain in the French Alps when my hand would not stop shaking. When my husband came off the slopes with my 10-year-old son, I remember saying to him ‘as long as it’s not Parkinson’s.’
The seed had been sown. After this ski holiday when I was back in my clinic working as a dietitian, I saw a client who had not been to see me for many years, and I noticed I noticed that my handwriting was really small in comparison to the last entries I had made previously. What was odd was that I could not make my handwriting any bigger...no matter how much I focused on it. Then I noticed other minimal things such as not being able to twirl my fork of spaghetti on my spoon and whilst at a Bruce Springsteen concert, I could not wave my right hand like my left. I had also been going for physiotherapy for an irritating pain in my right elbow and arm and an aching shoulder.
Now as a scientist and health professional I was a natural researcher, so it did not take me long to find that my small handwriting is indeed micrographia, a symptom of Parkinson’s and subsequently found that an aching shoulder or in its extreme frozen shoulder is a prodromal (early) symptom of PD for some and that my inability to twist my past or shake my hand was indeed bradykinesia and rigidity, cardinal symptoms of PD. But like many I had to go through many tests to get my diagnosis as I was a fit health young (ish) at woman at 46 with minimal symptom that it was suggested we check for a trapped nerve or other more serious things like a brain tumour. I was glad it was not the latter, nor was it ALS. YOPD was confirmed 14 months later, after my daughter had been born and I had finished breastfeeding. Waiting for that scan and confirmation was an exceedingly difficult experience. A new baby and a new diagnosis of PD. It should have been a time of celebration. Instead, it was a time of coping. Coping with a diagnosis of Parkinson’s disease.
In those first months I thought my fatigue was natural for a working parent. It was not until I started taking medication that I realised how much I had been struggling. I was perpetually tired, and my family were the ones who often suffered. I loved watching movies with my 10-year-old son, but I just could not keep awake long enough. Sometimes I would have to leave my daughter watching the screen so I could sleep. Wall after wall of exhaustion would hit me. The only way I can describe this fatigue is like the tiredness during pregnancy an all-encompassing experience, like walking in treacle.
I hid my Parkinson’s diagnosis for two years, for fear of judgment. But after the World Parkinson Congress in Kyoto, where I met so many amazing PD advocates, I felt I had to stop living a lie. I had to own my diagnosis and make it work for me. I have never looked back.
Enter centre stage…Sree Sripathy…we had met in Kyoto apparently…sorry Sree I cannot remember, and I am letting Parky take the rap for that! But she reached out to me after Kyoto and we started chatting regularly about being young with PD, the issues we had to deal with such as work, relationships, and family. WE agreed that it was great to be able to share with someone who ‘got it’ because you see many of the symptoms are hidden and hard perhaps for people to understand the mental and physical impact. You do not want to be moaning to your friends and family all the time. But with fellow YOPDers we can moan as we know someone can identify with it, share what they do to help it, or just listen and make you laugh about it or cry with you about it. It is almost liked a support group was what we needed like a 12-step group.
So Sree said hey what about I get some of us together on a WhatsApp group and so we grew to a group of about 12 women with YOPD. From this then our friendships really get through a video app group Sree set up on an app called Marco Polo. As we are all on different time clocks this enables us to share at any time and we can check in with each other. This wonderful group of ladies have become my tribe that has got me through downs and celebrated my ups. And with covid, in particular, they have been a lifesaver. We have also met on zoom wearing silly hats, dancing, laughing and the odd glass of wine. To this day, we share our innermost thoughts, feelings and struggles with life, love and – oh, yes – Parkinson’s disease. There has been much joy and laughter, amongst the odd tears.
And a common topic amongst us ladies has been that of our time of the month and how our PD symptoms would go out of whack and the conversation built about the need to investigate why this was happening. As members of the Wellness committee of the PD Avengers, myself and Kat decided we needed to do something. So, we developed a survey for Women with PD about their hormones. And the results were astounding (PD Avengers blog link).
We felt so passionately that our voices were not being heard that we said to ourselves... damn this, don’t just stand there do something…and that something is the Women’s Parkinson’s Project. And the beginning of a beautiful adventure with my friends Kat and Sree and all who wish to journey with us to raise our voices for better treatment and research for women with PD.