A personal Parkinson’s disease story

A personal Parkinson’s disease story

I would like to share my story to help you understand what it’s like living with Parkinson’s disease.

April is Parkinson’s Awareness month. I would like to share my story to help bring an understanding of what it’s like living with Parkinson’s disease.

I’m April/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 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 BC right away and they were very helpful.

Then I joined the Trail/Castlegar Parkinson’s support group, which was awesome. We meet monthly on the third Tuesday from 11:30-2 in Trail it the Colander restaurant.

We are very lucky to have a physiotherapist at the Trail 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. This past couple of years I have not attended as many Parkinson’s Exercise groups sessions because I work in Castlegar and it’s hard getting time off work to attend.

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 — lack of dopamine in certain parts of the brain. Exercise is also good because it retrains our brain to make new pathways in the brain which helps keep us moving. I was doing great exercising when I was first diagnosed playing hockey, walking and doing yoga.

Then in 2014 around May/June, my PD medication was causing a bad/negative side effect. So I had to change to a different 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).

The weird part of this eight-month period when I wasn’t doing well was when Robin Williams committed suicide and it was reported he just found out he had Parkinson’s Disease.

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 and limitations. I ended up taking four months off of work — December 2014 to April 2015).

I used this time to adjust my PD medication after going to the Pacific Parkinson’s Centre at UBC. I went to see movement disorder specialist neurologist Dr.Stoesl.

I received support for 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% 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. Dr. Wile opened the Okanagan Movement Disorder Clinic at the Kelowna hospital, in partnership with Dr.Wile, IHA, UBC, Parkinson Society of BC and PD support groups. This is great for people with PD in our area because they don’t have to drive as far to see a specialist. I have been able to see Dr. Wile twice now.

Since being diagnosed back in 2013 I have been able to attend six one-day Parkinson’s Society of BC conferences. We even had a conference held in Castlegar.

Also I had the privilege of going to the World Parkinson Congress in Portland, Ore. in September 2016. It was a five-day conference with people with PD, doctors specializing in PD research and treatment from all over the world.

It was a very good experience and very tiring but well worth it.

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.

Something important I have not mentioned yet is how supportive my family and friends have been with everything I do around Parkinson’s Disease awareness efforts. It is neat to get phone calls and/or people stopping me on the street to tell me adopt something they read or saw on TV about new PD treatments or news about new exercises that may help me.

Just a little update of where I am at today.

I am still working. I am now a co-facilitator of our local support group. I attended a conference in the fall last year that I learned a lot about eating better and different to help with my PD symptoms which made me make a total change in my diet. I am now taking less medications than last year.

I am planning to go to a one-day conference in Vancouver in June. The conference is called Moving Forward Together which is a great way of thinking even if you have progressive disease which there is no cure yet.

Thank-you for giving me this opportunity to share my PD story.

Reminder April is Parkinson’s Disease month.

For more information call me, Todd Wallace at 250-505-4666