I’ve been asked to reflect on my Parkinson’s journey over the past 20 years, and it’s taken me long time to get my thoughts together because so very much has happened.
Now I’m wearing the Eye Guide MC, which over the last 5 of those 20 years has transformed my life to a life, I feel I have come so far. I could not have believed it possible that I’d be running my own business one day, when I received that diagnosis.
My invention has catapulted both my husband and me back into the work place, running our own company with such wonderful people and serving over 200 people with Parkinson’s, who are so special and so brave to come and try something so new.
And we are a special kind of people – we are people for whom our lives were changed but without being asked. We didn’t wake up one day and think today I’ll try that shaky condition out but if I don’t like it I’ll give it back.
No, one day, like me, you look down at your right hand and wonder ‘why is my little finger constantly moving?’ and then slowly but surely Parkinson’s is diagnosed.
To reflect on what Parkinson’s was truly like initially, I guess it’s a bit like being bullied. You just can’t shake them off no matter where you go or what you do it’s there. And it hurts. It’s painful. The constant movement of your wrist back and forth, then the walk, small, slow shuffling steps.
You only look down at the floor because you think ‘in a moment I’ll fall’ and you’re stooping now anyway – because that will become the norm. I constantly held on to my husband Chris everywhere.
Slowly over time you lose your smile. They call it the Parkinson’s mask but this mask doesn’t come off.
And no one really knows if you’re happy or not so they presume that today you’re not, but actually you’re OK.
Parkinson’s fatigue is a tiredness like no other. It’s Chronic Fatigue Syndrome but you have all the body movement to go with it. For me, I had a lot of head and bad facial movement called Dystonia. I guess I was pretty lucky it wasn’t completely all over, but I did have some awful experiences.
For example, once we were in a restaurant and the waiter was fixed on my face moving and my tremors were going ten to the dozen because now I was so anxious that I just shut my eyes and slept right there and then because in a way my brain had just put me in shut down mode. It’s hard to keep going out anywhere, but somehow you do try.
Your personality changes too. Mine changed each time my pills increased. I became a good drawer so I thought ‘great I really like doing this!’ Three months on one drawing was a bit much because of the tremors, but it is was a good drawing and kept me occupied as I started over and over again. But in six months I was back to my neurologist for him to say ‘OK let’s go up two more pill.’
Then I couldn’t draw anymore. Not even a simple box. But now I could take a watch apart and put it back together! Now I making clocks out of frying pans and sweet tins! Then my pills upped again and no longer can you do it and you break your husband’s best pocket watch.
As time goes on I learned that trouser pockets are essential to hide the tremors which are now coming into the left side as well as my right.
The depression drops your mood so badly that you constantly think ‘this isn’t for me today’ and in comes another pill to control that.
Watching TV was so hard. For example, if you look at this blog and move your head sideways back and forth, you soon get fed up because you can’t read it. The tv is the same, everything on the move. Your tremors, your legs, your face, you’re worn out – so you try to just shut your eyes and listen to.
My mental health was affected. I suffered pretty badly with hallucinations for a lot of years. My Chris went through a kind of hell which no husband should go through, but I think losing my volume in my speech was probably the hardest part. We would sit almost in silence.
The brain fog is a pain. Some days you think you’re OK but another day you’re so slow that your words start to wobble. It could be early afternoon and you so wanted to go and see your mate as planned, but decide it is better to sleep and try again tomorrow.
Do I leave constipation out of this picture? Is it not a laughing subject. Parkinson’s people have to constantly take drinks or pills every single day to help us, because if we don’t a strange thing happens. Our Parkinson’s pills build up in our stomach which means our pills don’t work as well. So with each visit to your nurse we face the “how’s your constipation?” question. It’s just another word to me now but the pain is incredible and it truly is not funny for us.
There is so much more to Parkinson’s and this is just me – there are so many of us and we’re growing in number. All with a variety of these symptoms.
So what changed?
I invented Eye Guide MC.
I still get tired and constipated and a little depressed, but I try really hard to take my meds on time, every time.
Eye Guide MC brings about gentle changes that become noticeable changes. Unlike Parkinson’s, if you don’t like it you can take it off and think about it another day.
I call it the ‘gentle giant’ because it’s small and discrete but can do big things.
In the 20 years of Parkinson’s, I have loved and truly known love, I have lived, laughed, cried and lost people so close to me that my heart nearly burst but the most wonderful reflections are my husband who is a kind lovely man who I love and respect with all my heart and my family, my two amazing dogs Paddy and Zena and old and new friends and a nurse who stuck with me and who happened to introduce me to an amazing group of people that just happen to have the same as me – Parkinson’s disease.