Local man speaks out about Parkinson's Disease and upcoming fundraiser
April is Parkinson’s Awareness month. I would like share my story with you to hopefully help bring a better understanding of what it is like to have Parkinson’s Disease.
In April or May of 2013, I noticed a couple of things with my left hand/arm which didn’t seem normal. I noticed my left arm didn’t swing normal when I walked. Also I found it took me a long time to get stuff ( ball markers for golf) out of my left pocket (slower than normal). I decided to go to my family doctor (June ) in Salmo, my doctor suspected I may have Parkinson’s disease.
I had tests done to rule out other possible causes for my symptoms. There is no blood test or test like that to diagnose
PD. I started doing my own research of PD. I went to a neurologist in September 2013 and my family doctor’s diagnosis was confirmed- I have PD.
It was a shock and a relief at the same time. Now I know what is happening and I can move on. I got in touch with Parkinson’s Society of BC right away and they were very helpful. Then I joined the Trail/ Castlegar Parkinson’s support group,which was awesome. We meet monthly (no meetings in July and August ) on the third Tuesday from 11:30 a.m. to 2 p.m. in Trail at the Colander Restaurant. We are very lucky to have a physiotherapist at the Trail Regional Hospital who specializes in working with people who have PD. Also, I started attending the Parkinson’s Disease exercise group (facilitated by Joanne Robbins, physiotherapist ). The Parkinson’s exercise group was started up in 2014. This past year I have not attended as many Parkinson’s exercise group sessions because it’s hard getting away from work to attend.
Exercise is very important for people with PD because we need to keep our muscles moving. PD is a disease that affects a part of the brain the makes your muscles work properly (lack of dopamine in a certain part of the brain). Exercise is also good because it retrains our brain to make new pathways which helps keep us moving. I was doing great exercising when I was first diagnosed , playing hockey,walking and yoga.
Then in 2014 , around May/June , my PD medication was causing a bad/negative side effect. I will not get into details, but I had to change my PD medication. I went through a rough time for eight months or so. I wasn’t exercising as much as I needed to. I was dealing with depression- which can be part of having PD. Also I was dealing apathy- which can be part of PD. The hard part with having PD is the non-motor symptoms (apathy, depression, not sleeping well) which people can’t see which can be worse than the physical symptoms(tremors, slowness, talking softly, can’t smell).
A weird part of my eitght-month period when I wasn’t doing well was when Robin Williams committed suicide and it was reported he just found out he had PD. Kind of scary.
I need to note, I told my employer I had PD as soon as I was diagnosed. My employer has been very accommodating with my PD needs. I ended up taking four months off work ( December 2014 – April 2015). I used this time to readjust my PD medication after going to the Pacific Parkinson’s Centre at UBC (went to movement disorder specialist neurologist Dr. Stoesll). I got help with my depression, which has helped me considerably. I started exercising again and this still a work in progress. I am noticing more motor symptoms now from having PD. For example I am walking slower, experiencing more tremors, my fine motor skills are not good and my balance is not as good. I am still not a 100-per-cent comfortable with my PD symptoms around my co-workers and the public but I know I will have to deal with it because this is who I am now.
There is now a doctor in Kelowna who specializes in movement disorders. Dr. Wile has opened the Okanagan Movement Disorder Clinic at the Kelowna Hospital (this a partnership with Dr. Wile, IHA, UBC facility of medicine, Parkinson’s Society of BC and PD supports groups). This is great for PD people because they don’t have to drive so far to see a specialist.
Another note – I have attended three one-day Parkinson’s Society of BC conferences/workshops since I was diagnosed. I really feel educating myself and connecting with other positive PD people is what keeps me moving forward with living with PD. Educating as many people as possible about PD is another positive that keeps me feeling good.
Something important I have to mention is how supportive my family and friends have been with everything I do around Parkinson’s Disease awareness efforts. It is neat how I will get phone calls and/or people stopping me on street to tell me about something they read or saw on the news about new Parkinson’s Disease treatments or new exercise that will help me.
I am doing a fundraiser/ awareness campaign this year as part of Parkinson’s Society of BC fundraiser – Parkinson’s Movement. My goal is to walk 550,000 steps from February 14 to April 10 which 10,000 steps per day. I am hoping to raise $1,000. There is a link on the Parkinson’s Society of BC website to donate.
Thank-you giving me this opportunity to share my PD story.
For more information or questions you can call me at 250-608-2865.