pump it up

Duodopa2
how I get “pumped” every day!

Originally published on May 26, 2013 

I was diagnosed with Parkinson’s Disease in September 2000 at the age of 43. I was advised by my original neurologist that I would be in a wheelchair in 5-10 years. While initially devastated by this news, as time went by, I became increasingly combative with this news. Each anniversary found me proud of my continued mobility and, as I approach the 13th anniversary, that wheelchair remains a part of some distant future.

Still, in the past few years, PD has seeped into, and solidified a presence, in every aspect of every day life. With the exception of 4 hours at night when I am asleep, PD brings with it varying degrees of stiffness, slowness of movement, muscle pain and weakness, reduced dexterity, tremors, cramping, dystonia (curling of toes), cognitive dysfunction and weariness. My cocktail of meds have no doubt helped, though their effectiveness wains over time and doses require regular adjustment. Fortunately, I have had good care provided from a neurological team at Toronto Western, and, in September 2011, I was given the opportunity to participate in a clinical trial for a new drug-delivery system for PD wherein my main PD meds are delivered via slow release by a pump i have strapped to my body. This began with a week of nasal injection of the drug before surgically implanting a tube that henceforth is used for on-going infusion. I am also able to periodically adjust the dosage throughout the day when I require higher levels.

While I was pleased with many of the benefits I received from this new treatment, problems at the site where the tube entered my body became too much to bear and in July 2012 I had the tube removed and temporarily resumed my regular course of oral medications. In January 2013, the tube was again implanted and I returned to the clinical trial. To date, things have been going very well, thanks in part to early intervention and constant support from my neurological team and community in-home nursing provided through CCAC.

In addition, I am fortunate to have a health support system that extends well beyond this clinical trial. From my family doctor, local pharmacist, physiotherapist, massage therapist, and of course my family and friends. It’s hard to imagine going down this road without them.

DSC_0506

the first few days of the clinical trial, 2011

IMG_9907

what I’m wearing today, tomorrow and every day thereafter
the brown vest that holds my pump in place!

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5 thoughts on “pump it up”

  1. Hi Rob,

    Not sure if this reply will get to you. Have to learn how to reply to your blog the right way. I am so proud of you it has been a long journey and though very difficult at time, you keep going. Takes a strong person to keep being positive. I know there are time that you feel you are not, but look at the times that you have kept being strong.

    Keep on going. You are in inspiration to all those who know and love you. Keep well my friend. Margarita

    Like

  2. You are doing well. First time round had to give up because of problems but you went back to it when you moved forward again. Best wishes for the future, you are looking good at the moment!

    Like

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