Submitted by Todd Wallace
April is Parkinson’s Awareness month. I would like to share my story with you to hopefully help bring a better understanding of it is like to live with Parkinson’s Disease (PD).
In the spring 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 normally when I walked. Also I found it took me a long time to get stuff (ball marker for golfing) out of my pocket which was frustrating. I decided to go to my family doctor in Salmo in June my doctor suspected I may have Parkinson’s disease.
I had tests done to rule out other possible causes for the symptoms. There is no blood test or other tests 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 knew what is happening and I can move on. I got in touch with Parkinson’s Society of B.C. right away and they were very helpful. Then I joined the Trail/Castlegar Parkinson’s support group, which was awesome. We meet monthly (except for 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 Kootenay Boundary Regional Hospital who specializes in working with people with PD. Also I started attending the Parkinson’s Disease exercise group (facilitated by Joanne Robbins, physiotherapist). The PD exercise group was started in 2014.
What I am learning is 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 that makes your muscles work properly. Exercise is also good because it retrains our brain to make new pathways in the brain which helps keep us moving.
Then in 2014 around June, my PD medication was causing a bad/negative side effect. So I had to change to a different 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. The hard part of having PD is the non-motor symptoms (apathy, depression, not sleeping well are some of them) which people can’t see can be worse than physical symptoms (tremors, slowness, bad balance, talking softly, can’t smell ).
My employer has been very accommodating with my PD needs and limitations. I ended up taking four months off work.
I used this time to readjust my PD medication after going to the Pacific Parkinson’s Centre at UBC. I received help with my depression which helped me considerably. I started exercising again and this is still a work in progress. I am noticing more motor symptoms now from when I was first diagnosed. For example slower, experiencing more tremors, my fine motor skills are not good and my balance is not as good.
I am still not 100 per cent comfortable with having PD symptoms around my family, co-workers and the public but I know that I have to deal with it because this who I am now.
There is now a doctor in Kelowna who is operating a movement disorder clinic. Doctor Wile has opened the Okanagan Movement Disorder Clinic at the Kelowna hospital, this is a partnership with Dr.Wile, IHA, UBC, Parkinson Society of BC and PD support groups.this great for People with PD in our area because they don’t have to drive as far to see a specialist.
Since being diagnosed back in 2013 I have been able to attend 6 one-day Parkinson’s Society of BC conferences. We even had conference held in Castlegar which was really nice for us in Kootenays. Also I had the privilege of going to the World Parkinson Congress in Portland, Oregon in September 2016.
I really feel educating myself and connecting with other positive people with PD is what keeps me moving forward with living with PD. I am now part of an online Young Onset Parkinson’s Disease group that meets monthly to have great discussions. Trying to educate as many people as possible about PD is another positive part of my life that makes me feel good.
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