Living with my spinal cord injury from Syringomyelia, as well as with EDS, epilepsy etc, I am used to social distancing and isolation when in pain/not feeling well or with mobility challenges, but the global pandemic & the recent natural disaster where I live has presented me with new challenges and expenses, making it even harder to get the care and mobility assistance I need.
I have so much hope! I have an amazing community of support – if you’re reading this, you are part of it! In light of COVID-19, so many friends and family have reached out to see how they can help. While COVID-19 canceled everything fun, it unfortunately did not cancel my conditions or mobility needs, and in fact, it’s more crucial than ever that my home be accessible as I was sick all this year and have been weaker & more fatigued than ever before. This is also partly due to losing access to physical therapy, exercise machines at the YMCA, etc.
—I was lucky enough to get an electric foldable wheelchair-finally! Now I need some crucial accessories, such as the lift to get it into our car without having to pick up a 50-pound folded machine.
—Stairs present a real challenge with my ataxic gait, balance problems, joint pain, fatigue, weakness, and oscillopsia. We are looking to install stair lifts to the up and downstairs.
– Specialist appointments, often without the same level of care as pre-pandemic, but at the same cost.
—Medications
—Insurance premiums
– I cannot go to physical therapy due to COVID, so I need some equipment in my home to maintain strength and mobility.
– I need a special glove that restores grip in exactly the fingers affected by my spinal cord condition. It uses electrical signals to help your fingers squeeze again. This would make a HUGE difference in my ability to write, draw, paint, sew, and do daily tasks!
– Many things like groceries and medications need to be delivered, and the cost is so much higher.
--Because of my genetic mutation MSH6, I am at extremely high risk of a variety of cancers and will require prevent hysterectomy + screenings for colorectal, esophageal, pancreatic, bladder, liver and other cancers frequently. Due to a high risk of breast cancer as well, I require screenings every six months.
If you have the capacity to give right now to help me over these hurdles, I will be forever grateful! I’ve listed a few of my most critical needs below just to give you an idea of what your donation to Help Hope Live could help pay for on my behalf.