“If you are still talking about what you did yesterday, you haven’t done much today.”
It’s been almost a month in my own place and I continue to enjoy it. This past weekend Bob, Amanda, their 19-month-old daughter, Anna and my nephew, Ryan, all paid me a visit. It was wonderful to spend a day with them in my new place and enjoy a much more relaxed atmosphere. Anna has gotten so big since I last saw her and is now walking on her own (I’m jealous)! She is also able to say many words, one of which is “Uncle Scott” which gets us both excited! Like most children, Anna likes to give things to people, such as her toys and things she finds around the apartment. She was able to feed me pretzels on her own which I ate on my own — a win-win for both of us! It was great to catch up with Bob and Amanda as well, and of course Ry-guy continues to make me laugh. We spent most of the day watching “The Annoying Orange” on YouTube. If you have not seen it, it lives up to its name!
While they were here, Katie stopped by to give me Communion and inform me on a pseudo-fundraiser she is setting up for me. She plans to run the Cleveland half marathon in May on my behalf and hopes to raise support for me at the same time. Details will follow shortly which I will post for all. Many thanks to Katie for taking on this endeavor!
The weather has still been very cold, sunny at times, but still cold. There is no such thing as Spring in Cleveland. We generally morph from Winter into Summer going from 17° to 70° almost overnight. Thus, it’s still not warm enough for me to spend time outside. Fortunately, I have been using the cold weather to rest my pressure sore. It had closed up, but recently reopened as I’ve been spending close to six hours a day in the chair. I am very frustrated with this cycle and how it limits my ability to stay in my chair for long periods of time. I spent an average of 8 to 10 hours a day outside last summer. My routine involved me putting on my iPod and falling asleep, basking in the warm sun, tanning/burning my body and loving every minute of it!
I need to find the right recipe for keeping these pressure sores contained as they can greatly impact my daily routine and schedule. Unfortunately, I have decided to cancel my visit to Kennedy Krieger in April. A few factors went into this decision — the pressure sore and type of therapy offered. While this is a great program, it focuses on standing, e-stimulation and the FES bike. These are three pieces of equipment that I have/am in the process of getting, and will be able to use at home. Instead, I Plan to Apply to SCI — Step in Mason, Ohio and the Michigan Institute of Rehabilitation in Detroit. These are two very aggressive facilities that offer nontraditional spinal cord therapy. Their programs seem to be more aggressive and more strenuous than what Kennedy Krieger offers. I think I would enjoy and benefit from this therapy much more. They are similar to Project Walk in California and Step It Up in Florida. I still hope to attend Step It Up later in the year. Also, a friend and fellow quadriplegic, Chris, is opening a gym in Cleveland that provides therapy for spinal cord patients. The hope is to have the facility up and running later this year. Chris has become a great friend and resource I’ve had the fortune of meeting after reading an article about him in the Plain Dealer. He has asked me to help him with his facility, which I am excited and happy to be a part of! As an FYI, we are currently looking for Exercise Science/Physical Therapists to train and hire. If anyone is aware of any individuals who fit this bill and are interested in working with SCI physical therapy rehab, please put me in touch with them.
Now that I’m in my own place, I can complete my application process for the helper monkey! Will and I plan to make a video this weekend which introduces me, my environment and caretakers to this staff at Helping Hands in Boston. Since they’re not able to personally interview potential candidates, the video serves this purpose. Unfortunately, I have heard about several quadriplegics who have been denied assistance for various reasons. I hope I am able to buck the trend and qualify for my own personal helper monkey. I still think this is so cool as well as helpful, and I am hoping things find a way to work themselves out!
I have been selected to receive a service dog, but at this point may need to wait on the monkey resolution before deciding if I can move forward with a dog or not. I don’t know how well these two animals would coexist or if I am even able to own both at the same time. If given a choice, I think the monkey would be more helpful and able to assist with more practical tasks. However, I am a dog lover at heart! Either way, I look forward to sharing my home with an animal… keep your jokes to yourself!
Kristy sent me a link yesterday about some interesting new developments in the area of SCI medication. There is a new drug called, Cethrin, that has shown some very interesting and promising results in individuals with cervical spinal cord injuries. This information is very new and I still haven’t researched it is much that like to, but I’m cautiously optimistic about what I’ve read so far. As I learn more, I will post some information about it. In the meantime, if interested I have added a new video to the Links section of my website (can also access at http://www.spinalinjury101.org/ ). This video gives a great overview about understanding and caring for individuals with spinal cord injuries. If you have the time, check out Chapter 5A, which gives a great overview of what I’ve gone through.
Finally, I have had my physical and occupational therapy evaluations, and plan to begin at home therapy tomorrow. I’m not sure how long insurance will qualify me for, but am very, very excited to receive some therapy!
As always, thank you all for your prayers and support — it is greatly appreciated!
Scott
Lol…ok i will keep my jokes to myself 🙂 Sounds like you are doing well and making great progress!! Keep it up!! As always you are awesome and inspire me and my family!!!