deann-r
Forum Replies Created
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Federica,
I know of several adults who are getting Spinraza in the US and have their spine fused, I am among them. Sometimes a CT scan will show an opening so the injection can be done normally or with fluoroscopy imaging. My injection is given through the neural foramen using CT guidance because my fusion did not allow traditional access. With this method they gain access to the spinal fluid from your side through the natural opening where your nerves branch out into your legs. It’s worked like a charm for me. Some have gotten a port surgically placed for easier access. Others get theirs via cervical injection from an experienced doctor. Some have also had a procedure called a laminectomy to remove a segment of bone to gain access. Each method has its benefits and drawbacks. When Spinraza does become available for adults in your country I would recommend discussing your options with your doctor. I’m hopeful everyone will have access to this treatment. The sooner the better, so keep fighting for it!
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I tend to hibernate. It doesn’t always help as germs tend to find their way in. I’ve only used BIPAP once during a hospital stay. As I’ve never done a sleep study, not sure if it would be useful in determining if BIPAP would be needed on a nightly basis or not. I do have a cough assist. Use it mostly when I’m sick. Who adjusts the settings for you? I’ve never been happy with my settings.
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Great podcast! I especially liked when she brought up the point that if others see more couples where one or both individuals may have a disability it will become more accepted. That holds true for a lot of aspects of a person with a disability. From jobs to entertainment if more people saw we actually do these things it might become commonplace.
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Guten Tag! (That’s about the extent of my German.) I too had a PCA agency caring for my needs in college. On more than one occasion I was stranded in bed when no one showed up to get me up in the morning. It actually happened my first day! Luckily I slept with my phone, so could call for assistance. On one occasion my phone had died, so I had to call out when a neighbor was walking past. Frustrating for sure. My Mom actually had to stay in my apartment for almost a semester one year when the agency was short staffed. Aren’t moms the best?! Eventually the agency figured out I wasn’t going anywhere so covered the position. Now that I’m on my own I’m with an agency that allows me to find my own staffing and I have a PCA overnight, so at least I don’t have to worry about being stranded in bed. I was resistant at first to having the PCA overnight. Now I’m used to it. Getting the hours for overnight was a struggle as the county was requiring I have someone but not willing to approve the hours. Needless to say if they required it they had to approve it. Nothing is easy, but persistence pays off.
I think it’s awesome you’re going into the science field. A bit jealous though. Meteorology was what I wanted to go for, but I couldn’t line up housing and PCA care at the only college in my state to offer the program. Ended up getting a degree in business although a lot of my electives where in science.
Best of luck on your journey!
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Certainly difficult to find employment when you have a lot of things you have to work around such as personal cares and travel. Luckily I am able to work from home and have a flexible schedule (I do payroll for a small company.) When I did work outside the home I would schedule the local transportation bus that had a lift. Tricky part was bundling up in the winter. I just wore layers and forwent the winter coat as I didn’t have someone who knew how to take it off or put it back on when I left.
Currently I qualify for SSDI instead of SSI that fluctuates with income. Funny, I just had to verify my last 10 years of income for the SSA, and verify I was still disabled. Nope, even with Spinraza I still can’t wipe my own ass (this is the adult group right?) Anywho, as far as medical coverage since I did work for a certain period of time I qualified for Medicare and my income is low enough to have Medicaid as secondary. Somehow that was the magical combination to start Spinraza.
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I was surprised when I was given the go ahead to start treatment since so many are still fighting for approval. Started treatments in September 2017. Because of my spinal fusion they do the injections through the neural foramen with ct guidance. It’s gone incredibly smoothly. I’m 38 type 2. You can follow my vlog DeAnn’s Daily Adventures on YouTube.