For better treatment and research for women with Parkinson's Disease
RAISING OUR VOICES
————
There are more than 10 million people worldwide diagnosed with Parkinson's Disease. How many are women? What is the average age women are diagnosed? How do women react differently to medication than men? There are no clear answers. We need answers.
And so we started the Women's Parkinson's Project to raise our voices for better treatment and research for women with Parkinson’s disease.
The Women's Parkinson's Project
Fatigue Was the First Sign of PD
It began in 2010, in my early 40s, a feeling of fatigue that felt inordinate to activity. My internist tested me for Lyme disease at my request (negative) and assured me a mother of 4 kids would, of course, feel tired at times. In 2011, our family moved to a new town and I to a more intense fatigue and soreness.
The Price of Parkinson’s Disease
I started to notice symptoms around 2019 (in hindsight my symptoms were more like 2015). First, I couldn’t do my spin classes because my foot would turn in. I tried orthopedic doctors, physical therapy, and acupuncture but because I had a difficult time explaining what the issue was other than, when I spin in class I can’t get my foot flat in my pedal.
Yes I Can is my Motto Despite PD!
In 2000 I was finishing up my senior year to become a library/teacher specialist. I already had health issues with fibromyalgia and essential tremor. My rheumatologist sent me to a neurologist who broke the news that I was now showing definite signs of Parkinson’s.
Knowing My Body Helped My PD Diagnosis
As a former Division 1 athlete, and a registered physical therapist for 30 years, I knew my body pretty well. I had treated many patients with Parkinson's Disease and my own mother had been diagnosed with PD in her early 70's.
Dopamine Dilemma
That hour before my next dose of medication is due, is a horrible, horrible hour. I can feel my body slowing down as if it were actually a machine which is gradually running out of oil. I am in the kitchen, for it is also the time of day when I need to make dinner preparations for my children.
My Diagnosis Was Like Receiving a Time Bomb
My name is Francisca Ruiz, but my friends call me Paqui. I was born in Santa Cruz de Tenerife, in 1964, and I still live on this Atlantic island, Tenerife. I am a mother of four boys who are all grown up now. I have always worked, until I was diagnosed with Parkinson's in 2012. I was a marketing assistant, I loved my job.
How My Morning Routine Has Changed Because of PD
Mornings look quite different than they used to. There is no such thing as waking up, jumping out of bed, and then hopping in the shower. There is no get up and go. Instead, mornings move slowly. The process of getting ready for the day takes much longer. I need an extra hour to get ready. I need to come to life before getting ready.
My Pinky Finger Moved Like Jagger
It was a beautiful October day when I went to see the neurologist for my second exam. For a few months, I had noticed that my pinky finger moved when I held a glass and decided it was worth getting an evaluation.
Muscle Spasms Indicated Something was Wrong
Life began to change when I could no longer teach my fitness classes without extreme muscle spasms, when I couldn't complete a 5K due to leg pain and weakness, when my hand began to shake without explanation and when going to work as a physical education teacher caused a level of fatigue and brain fog that I had never experienced. Each of these symptoms caused me to fear that I would no longer be able do the things I loved.
Je Suis une Femme de 47 ans avec Parkinson
Je suis une femme mariée de 47 ans, diagnostiquée de la maladie de Parkinson en 2011. Mère de 2 garçons de 10 et 14 ans au moment du diagnostic, je me suis tout de suite rapprochée de l’association française France Parkinson pour savoir comment continuer à vivre au mieux malgré la maladie de Parkinson et surtout comment l’annoncer aux enfants sans les effrayer.
English translation below
Five PD Tips on from Maria De Leon
Parkinson’s is never just Parkinson’s, it permeates every fiber of our being from head to toe and impacts everything around us. A Parkinson’s diagnosis can shake us to the core especially when given an early age diagnosis. But living with this chronic disease does not mean giving up or stop living. It is possible to live a full abundant life despite our short comings caused by the disease.
Tapping Into Muscle Memory
Approximately one year ago, I tried a new thing. More precisely, I tried a new old thing. I signed up for dance lessons. Decades ago, when I was an awkward adolescent trying to survive middle school, a cute boy teased me for being a tap dancer. Several days later, much to the chagrin of my instructor, I decided to hang up my dance shoes.
Is Sharing Caring?
Being a nurse for more than 20 years, I’ve across many difficult situations, met plenty of amazing people, cried with them, laughed with them but never thought, not even once myself, that I’d become a patient or receive a chronic non-curable diagnosis. My concept about life has been changed on 25th September 2019, the day I have been told “Tincy, you have Moderate Early onset Parkinson’s disease.”
The Spoon Theory: A Day in My Life
Every morning I wake up feeling hopeful. Hopeful that I will accomplish all the things on my list and spend quality time with those I love.
I try to push aside the morning tremors and stiffness with positive thoughts. I choose to not focus on the fact that after living with Parkinson’s for nearly a decade that slowly but surely, the symptoms and management of them is taking increasing amounts of my time and energy.
PD, Fasting and Me
It was about November 2018 when I first became aware that something wasn’t right. My right middle and ring finger had developed a mind of their own – and began to independently move depressing the right click button on the mouse when I didn’t need it to.
Why does my hand want to play piano even though there’s no piano nearby?
I remember that day thinking, ‘What the hey?!!!’ I had retired from my job as head of a busy Visual Arts department at a downtown Toronto high school and was living my dream—painting and traveling. I had moved to a beautiful smaller city and was working on a large, realistic acrylic painting, when I noticed my dominant hand shaking.
Hospital Date
Siddharth has managed to book my appointment with the specialist from the UK. He visits every three months and has good experience with YOPD.
As expected, his charges are high, but we wanted to go with an open mind. The next morning, we were ready by 6 a.m. and had to catch the train in 40 min from Tirupati to Chennai.
A Day Without Meds Is Like A Day Without . . .
I started taking Levodopa five years ago immediately following diagnosis. Right from the start, I didn't notice a significant impact. Other PWP spoke about their on/off times and how they often watch the clock in anticipation of their next dose and with it, the intended relief. I
Today Is Going To Be A Good Day
Today is going to be a good day, getting ready for a special night away with friends.
I actually managed to get back to sleep after waking up at my usual time of 4:30 am so I'm well rested and ready to get stuff done. My nights are very restless - I talk, laugh, shout and fling my arms around in my sleep. A while back I even managed to throw myself out of bed.
Hospitals Should Be a Place of Healing
Hospitals should be a place of healing, that is the traditional understanding. But what happens when what you need from the hospital is directly in opposition to what they can provide? Take for example the experience of Parkinson’s Disease patients. When they enter the hospital for any reason, they are twice as likely to die. They are at risk of being given contraindicated medications. They will likely stay longer and have poorer outcomes than other people admitted for the same reason but without Parkinson’s Disease.
Our Team
-
Richelle Flanagan
CO-FOUNDER
-
Kat Hill
CO-FOUNDER
-
Sree Sripathy
CO-FOUNDER