Pet Palooza – Coco

In 2007 my spine, hips and foot started to twist. It was very scary and I didn’t know what was happening to my body. In a years’ time my spine twisted to a 145-degree curve. My parents took me to so many doctors but no one could give them a diagnosis until I went to MA General Hospital’s Movement Disorder Clinic. They told me I had Dystonia; a movement disorder and there was no cure for it. Dystonia is a brain disorder that causes uncontrollable body movements and postures. The brain sends chaotic signals to the muscles, telling the muscles to contract, even if the person does not want them to. I started out going to Physical Therapy and taking all the Dystonia medications that the doctors suggested but none of them worked for me. In the fall of 2008, the doctors started talking to my parents about Deep brain stimulation (DBS) which is a neurosurgical procedure that uses implanted electrodes and electrical stimulation to treat dystonia. They assured my parents that it would help relieve some of my systems but to remember that it wasn’t a cure. I had the surgery at Christmas time 2008 and it took over a year for me to feel any relief. But over time it really worked me. In 2009 I had a 9-hour spinal fusion surgery – my spine is at a 45-degree curve now and I gained 5 inches to my height. (I’m taller than my sister now) Fast forward to 2021 I still go to the hospital (now at RI Hospital’s movement disorder clinic) to have my neurostimulators adjusted, my mom has a remote too so she can help with adjustments, and every few years I need to have my neurostimulators replaced – it’s an outpatient surgery that I am use too – I have had them replaced 5 times now. I still have some challenges with my balance and walking and I have to do PT exercises to strengthen my core. But I’m back to playing all the sports I love – I played golf in 2020 with my mask and practiced social distancing and got a gold medal and I have my own photography business – Double B Photography!

Donation Goal

$330 of $500 raised

Donors

Elizabeth Paolero

Supporting friends this year, since we didn’t get JJ signed up. Go Bryan!

Janet Hieshetter

Susand and Cliff Baron

Anonymous

JOELY DECRISTOFARO

Jennifer Huff

Happy Birthday! I’m so glad to have met you.

Paul Bedard

Kathleen Murphy

❤️

Sue Baron

You have come a long way Bryan - we are very proud of you. And our Dystonia family has made a huge difference in your life as well.
From… Read more

You have come a long way Bryan - we are very proud of you. And our Dystonia family has made a huge difference in your life as well.
From our support group here in RI to our Zoo Walks near and far - we have met so many wonderful people!!

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Virtual Walk – Coco

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Donation Total: $5.00

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