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My Weekly Journal – 09/24 Through 09/30
Monday, September 24, Through Sunday, September 30 – Finally, a week that I could get back to a normal schedule. My physical strength seems to be returning and my breathing and overall energy level seems to be back to where it was before I came down with pneumonia and had to be hospitalized. My kidney stones didn’t bother me at all this past week and I’m hoping that they’re small enough to where they are going to pass on their own without having to go to the hospital to go through surgery. Only time will determine this, but the way that I feel right now, I think that they’ll pass on their own.Over the past couple of months, I’ve realized that the wheelchair that I’m sitting in is probably one of the reasons why my right hip is hurting me so much. Medicare helped me pay for a new chair three years ago, but the chair that I received was not necessarily the chair that I ordered. When you go through Medicare to get a new wheelchair, they send an ATP, which is a certified seating specialist, to measure your body for your new wheelchair. The ATP meets with your physical therapist to take these measurements and the physical therapist can then make recommendations on the type of seating that’s necessary for each individual person. When I got my new wheelchair three years ago, I didn’t have a physical therapist, so I used a physical therapist that the ATP recommended. Some of the measurements that they took were wrong, and when I got my wheelchair months later, the chair did not fit my body like it was supposed to. Unfortunately, not much could be done about the mistakes. Medicare will only pay for a new chair every five years, but while speaking with my primary care physician, she told me that since I’m not on traditional Medicare, and since I’m using the Medicare advantage plan, there is probably room for negotiations. Plus, she also told me that due to changes in my medical condition, she can recommend that Medicare purchase me a new wheelchair based on the fact that my physical condition declined so much in the past three years. A few months back, I had a CT scan on my right hip, which showed significant damages in the muscle and the nerves, so hopefully this CT scan along with notes from my primary care physician will convince Medicare that a new wheelchair is medically necessary. I am in talks right now with the company that is going to help me get a new wheelchair. The ATP has already scheduled a meeting with Laura, my physical therapist, and both he and Laura will take these measurements and I know that Laura will have my best interest at heart and will make recommendations based on not only what she thinks is best, she’ll also take into account my specific needs and wants. This meeting will happen on Thursday, October 16 during my regular physical therapy appointment. After all of these measurements are taken, the wheelchair company will send all the paperwork that they do along with all of the paperwork that my doctor provides them to Medicare for them to make a decision. If Medicare agrees that I need a new wheelchair, the wheelchair company will bring me a few chairs out to my house that I can try, to make sure they we’re getting one that is going to properly fit me. Once this happens, they can order the chair and I should receive it within 2 to 3 months. I’m hoping that everything goes well, because a new wheelchair would definitely make a huge difference in not only the way I feel, it would also make a huge difference in my quality of life.On Thursday, I went to work out with Laura. This had been the first time that I had been to work out in nearly a month and it was nice to get back to a normal schedule, especially my workout routine. When I got there, Laura reevaluated me. She normally does this every four weeks, but we had to complete this reevaluation so that I could begin my workout routine where I left off before I got sick. The reevaluation went pretty well, even though I did decline a little bit for each different exercise, Laura said that the minimal amount of loss that I experienced would be easy to overcome in the next few weeks. Since this was my first time to exercise in nearly a month, Laura did not transfer me out of my wheelchair to the therapy table to work on my stretching. We focused all of our attention on my core strength and did all of our normal exercises with regards to my abdominals and my neck. The exercises went pretty well, and even though I had to stop and rest a few times, both Laura and I were enthusiastic that I should be able to transfer out of my wheelchair and began my stretching and my hamstring exercises by next week. As I stated in my journal entry last week, I miss working out with Laura because she’s such an amazing person and a lot of fun to be around. It was nice to see her and all of her coworkers.In this week’s video, I’m discussing a new delivery system for the Spinraza treatments. This system is called an SIC system. This is an acronym that stands for Subcutaneous Intrathecal Catheter system. Subcutaneous means below the skin level, and this subcutaneous disk has a line that’s called a catheter, that runs from the subcutaneous disk, through the vertebrae, directly into the central nervous system. This SIC system will allow doctors to administer the Spinraza treatments without having to go through any kind of fluoroscopic or CT guidance, and there will be no need for any anesthetic such as lidocaine. This will not only make it easier for doctors to administer the treatment, it will make it much cheaper because there are less procedural tasks that must be performed. With it being cheaper, more insurance companies will probably agree to pay for the treatment which will allow many of those who were once denied treatment the possibility to receive it. While the SIC system is still considered in the experimental phases, I do believe that this system will become available in the near future for everyone who is on active treatment with Spinraza. Click HERE to view my video.I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I’ll see you next Sunday. -
3 Replies
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Glad you’re back to PT! I know it sucks to go a few weeks without it, and I’m glad your appointment went well.
Also, every time I’ve had kidney stones I’ve been able to pass them without having to go through surgery. Good luck.
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I’m hoping they pass on their own. Yeah, I’m excited about being back in my workout schedule. I feel so much better after my workout, and going 4 weeks without them was a bummer.
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Glad your feeling better and getting back into a routine. I avoid surgery, so don’t think I’ll be checking into SIC. Especially since they don’t know how long it will last. Great having options though.
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