I have Lymphangioleiomyomatosis (LAM), a progressive & rare debilitating lung disease. There is no known cause or cure. I had a double-lung transplant in January 2013 but my new lungs started declining in 2015. Currently, I use oxygen 24/7 & I’m eligible for a 2nd lung transplant. For now, I’m just trying to live my life as best as I can and spend time with family and friends. It’s really hard for me to get around. I can’t drive anymore and I’m on disability income since I’m no longer able to work.
Currently, I’m being denied door-to-door service using a single vehicle on Durham Region Specialized Services, my regional , accessible public transit provider. This denial is based on the changes to Ontario’s regulations for accessible transportation. I’ve been offered “integrated” service, a model whereby I’ll be picked up and dropped off at a bus stop. When I get off the bus I’ll be picked up and driven to my final destination. I could wait up to 10 minutes for a bus, assuming there’s a space available for me to strap in my walker and oxygen tanks (legally required).
For someone with a severe, progressive lung disease, like me, lung function is affected by hundreds of factors beyond your control. Every day, even sitting down, it feels like I’m trying to breathe through a skinny straw with a hole in it. It’s hard work. Moving around (even a little), being exposed to weather that’s cold, hot, muggy, humid, or too many odors are just some of the things that restrict my lungs further, making breathing even more difficult for me. I get extremely short of breath just from entering/exiting a car and usually need help. When I get short of breath it means that I’m not getting enough oxygen into my blood cells. When this happens body has to prioritize where the oxygen you do get is allocated. Basically, my body is running on essential components only.
If I can’t use single-vehicle door-to-door service, I can’t get around on my own in an affordable manner. It would make me more isolated when I’m just trying to do the best I can. Until now, I’d been using accessible transit to go to pulmonary rehab, to my appointments with the lung transplant team, and to visit family and friends. I’m sure that many people with lung diseases and other accessible needs have been caught in a similar situation since Ontario has instituted these new guidelines.
I am hoping to fight these new guidelines, but need help with legal fees. I hope that if I’m able to fight this successfully it will set a precedent for future cases.
Thank you so much for reading. Any amount of money that you’re able to give is truly appreciated.
If you’d like to help in other ways please consider writing your MPP:
- Paula Camacho I
- dwayne arokium
- Dave Rothfarb
- Rosanna Lee
Organizer and beneficiary
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