Dear Suzanne,
I know that you have always had concerns about the tremor in your face and hands and 'nervous shake' that you have since you were very young.
Finally, in 2019 a doctor listened when I complained yet again about the tremor that worsened year after year. For the past two years, I have been unable to do many of the things that I normally do.
Let’s look back at some of the years:
By the way, you are a professional chef and work as a manager in a shelter for homeless people. You organize and run the team and feed over 10,000 meals per month (that 2-year culinary arts program that qualified you for City and Guilds of London chef papers paid off!). You also run a chefs training program where you teach the students how to cook and work in the food service industry – those students are clients from the shelter who are restarting their lives. You have been responsible for getting hundreds of people back into the work force in a viable industry and job. This took going back to college at 50 years of age – you passed top of your class with a VCC BC instructor’s diploma for adult learners. You also teach a food safe program for the students and workers at the facility and organization that you work, and for other non-profit organizations.
You have 3 beautiful and successful daughters, Tiffany, Robyn, and Victoria to first husband Dan, and you are happily married to second husband Lloyd. You love to camp, travel, swim and crotchet.
You will have your health concerns over the years and you fight a good fight helping to get them under control. You have a food addiction and love sweets which puts your weight up to 420lbs at one time. You struggle through the issues of this valid health concern until both knees no longer work and you are in excruciating pain daily. You have type two diabetes, high blood pressure and cholesterol. You are unable to exercise to help reduce the weight and it is a vicious cycle trying to drop weight due to your job and get healthy, trying diet after diet and solution after solution! You will have bariatric surgery at 52, the journey has yet begun – after three months you dropped so much weight (90lbs) that you had a heart attack and hernia which caused you to be hospitalized. Not a bad thing, as if you had the heart attack before the surgery, you likely would not have survived. You lost the weight and after 10 years of pain from arthritis you got your knee replacement surgery. Over the next 3 years, you had the other knee fully replaced and were finally pain free, lost 220lbs, could exercise, diabetes was in remission, no high blood pressure, heart had healed and was good, cholesterol, sleep apnea gone, you had skin removal surgery. You walked daily and exercised twice weekly – you climbed that mountain!!
With concerns increasing over tremors that were out of control, severe muscle pain the upper back, shoulders and neck, things started to get worse. I had spoken to doctors regularly about the annoying jaw and facial movement and the strong tremors in my hands – it was always dismissed. Finally, in 2019 I had gone to an event and two small children were there. I was chatting with them and they asked “why does your head and mouth shake so badly?” I had no idea that it was so noticeable to others! Lots of people had commented on it, but if two little boys under 5 could point it out, it seemed like it was worse than I even thought.
I made an appointment with the doctor and basically demanded that I was sent to see someone who could determine what this was. It had always been sluffed off as a nervous shake or most recently an essential tremor. It took 9 months for me to get in and see a neurologist. Finally, I got in and after one look it was determined that I had not only an essential tremor, but also early onset of Parkinson’s disease! Many clinical tests were performed, and some scans etc. The doctor put me on some Parkinson’s medication which helped decrease the tremors. It makes me wonder that if I had been diagnosed before, would it have gotten as bad. After trying for months, I had to take time off my job as I had so much difficulty controlling my hands (which are imperative when you are doing things like measuring and handling knives etc. A huge concern for accidents to occur). I am now home and walk daily; I do exercise classes through BC Brain Wellness Program and Parkinson’s BC; I swim twice a week; do lots of mind games like sudoku and crosswords to help keep my brain working; and I crotchet to keep my hand eye coordination (I have to use a covered sippy cup for my tea and can’t use knives or measure, portion etc. still). I live a healthy lifestyle and look forward to many more years of this. The medications need lots of regular changes and adjustments, but on the up times things are ok.
In getting more information and watching webinars, I came to the realization that Mum maybe had this. She had many signs, dragging leg, slurred and slow speech, unable to write or use her hands, and choking on foods etc. This went undetected and the doctors continued to say she had a stroke which was not noticeable on a scan or through tests! Sadly, Mum passed away because she chocked on something she was eating.
I am telling you all of this to prepare you for what is to come. It has been a roller coaster ride, so buckle up and get ready! You are unable to change anything, but can be in control only of the things that you can control. You are VERY strong though and can get through anything that you need to! Don’t ignore the health issues as they come up, get help, INSIST on getting checked and follow through! Parkinson’s does not have a cure right now, nor is there a test to determine if you have it (except brain autopsy… we will leave that there!). Medications are available, but don’t always work and there is a lot of downtime when they stop working. Stay in contact with your support team and get as much assistance and information on how to help yourself as you can through the wonderful societies that are there and available. Load yourself with information and remember self care and care for those surrounding you and support you (they need self care too!!).
I am still off work, but hold faith that something will come up that will help with the tremors and muscle pain so that one day I can return to doing the things I love.
We celebrate our 60th birthday in July this year. We have survived all of this (and the Covid pandemic of 2020). We are resilient and will continue to support the fight of Parkinson’s for as long as we can!
Thanks to Parkinson’s Society BC, BC Brain Wellness Program, Michael J Fox Foundation, and Davis Phinney Foundation.