-
My Weekly Journal – 08/20 Through 08/26
Monday, August 20, Through Sunday, August 26 – This was one of those weeks that never seemed to end. My new job with BioNews Services is keeping me busy, and since my caregivers are on vacation until Wednesday of next week, having two other caregivers in my house has actually gone a little smoother that I first anticipated. I’m usually in my office from 7:30 in the morning until about 9:00 at night, and much of this time is spent working on videos, podcasts and other activities related to my new job. I’m very thankful to have this new job because it gives me a chance to work out of my house without having to travel each and every day and fight the terrible traffic on our highways. Overall, I would say that this is been a pretty good week.I usually work out on Thursdays, but since my caregivers are going on vacation this week, I had to rearrange my workout with Laura. On Monday, Laura and her team of therapists transferred me for my wheelchair to one of the adjustable tables that they have. I was somewhat nervous about transferring from my wheelchair, but everything went much better than I thought it would. After transferring me to the table, Laura raised the table and put a box under my feet where my legs were level and my feet were flat on the box. Since this was the first time that I tried to balance myself without any back or side support, my nerves were racing. Laura was in front of me and Miles, her student therapist, was standing behind me. With a positioning strap around my chest, Laura and Miles got me in position and slowly started releasing their hold on me. I believe all three of us were somewhat surprised at how quickly I gained my balance and I was able to sit unassisted for over two minutes. While sitting unassisted, I leaned to my left and to my right and I was able to recover my balance and get back to a neutral position without any assistance. While the table was padded, it’s nothing like my wheelchair, and I began to get uncomfortable after about two or three minutes sitting up on the table. After about two minutes sitting unassisted, I began to get a little tired. Laura and Miles told me that for the first try, lasting two minutes was actually very good. Laura’s goals are to have me sit unassisted for up to ten to fifteen minutes each therapy session. I told Laura that keeping my balance was easier than I thought it would be, and I said that I knew that I could get up to that ten minute to fifteen minute mark in a short amount of time if I could just find a comfortable position. After sitting unassisted, Laura and Miles laid me down on my back and began stretching my legs. After removing my shoes, and as Laura began stretching my right leg, I think she was pleased that she could stretch my leg out as much as she did. As Laura worked on my right leg and Miles worked on my left leg, they also flexed my feet back is much as possible. Along with flexing my feet, they also flexed my toes to try to get as much movement in them as possible. Stretching my legs actually felt very good, but when they were working on my toes, this was very uncomfortable. Those of us who sit in wheelchairs for the majority of our day, have very sensitive feet. My feet are probably the most sensitive part on my body because let’s face it, they don’t always get a lot of attention. After stretching my legs, feet and toes, Laura and Miles transferred me back to my wheelchair, and Laura and I began our exercises on my neck muscles. After I got home from work out, I was a little bit tender in my right leg and hip but as the day went on, this tenderness went away. I was a little bit nervous that I would be uncomfortable in bed on Monday evening, but my hips and my legs felt great. On Tuesday morning when I woke up, quite a bit of the swelling in my feet had reduced, and while there was still some swelling, it was a marked improvement. I believe all of the stretching and the exercises that we did on Monday helped with this. This was Miles last week to be working with Laura, but Laura did hire another certified physical therapist that will be working with her full-time. When I go to work out on Thursday, August 30, Laura will be on vacation and I will be working out with her new physical therapist. I will resume working out with Laura the following week when she returns from vacation.In this week’s video, I’m going to be giving you my tips on hiring a caregiver. Whether you are hiring a caregiver to be with you for a few hours each day, or if you are hiring a live-in caregiver that will be with you 24 hours a day, this is something that most of those who are affected by SMA will have to face at one time or another in our life. This process can be extremely frustrating, and my presentation will give you some tips on what you need to look for when you are searching for that one particular person that will help you in your day-to-day living. While these tips are the ones that I used when searching for my caregivers, please keep in mind that everyone will have different requirements, and this is something that you need to sit down and discuss with your family and friends before starting this process. Click HERE to view my video.I hope everyone had a fantastic week and I hope your upcoming week is better than the previous. Do something for yourself this upcoming week that’s going to make you a better person. Until next Sunday, God bless. -
5 Replies
-
I can relate to how working full-time makes the weeks fly by. We’re glad to have you though, and I’m glad the new position is working out for you.
That’s good too that everything worked out at PT. I’m always skeptical about transfers as well, and I have to be extra sure that whoever’s doing it listens to my instructions exactly. The people who help me on Spinraza injection days have been really good about this.
Thanks for this video as well. It’s definitely an important topic, and I’m glad you took the time to help others in the whole caregiver process.
-
Thanks Kevin. I guess I’m obsessed with PT because I can truly see the benefits. Regarding my new job with BioNews, working with people like you, Mike and Chris make the job fun, and let’s face it, if you enjoy what you do, is it really work?
-
Glad to have you on the team my friend!
-
-
Love seeing what you’ve been up to. I was never a fan of pt prior to Spinraza, but now that there’s the possibility of improvement it makes it so much easier to stick with it. Now I can see it would have been beneficial pre-Spinraza as well. Glad to see you’re keeping up with it despite your busy schedule.
-
Hey DeAnn, thanks for your comments. For some reason, I guess I go against what many people would consider normal because I always wanted to do physical therapy to try to improve my strength. Before being properly diagnosed in 1996, the doctors knew that I had a neuromuscular disease and it wasn’t until I was around ten or twelve years old that they told me that I should not be working out or doing any physical therapy because I could make my muscles weaker. I wish they would’ve told me this at a much younger age because I would probably be a little stronger today if I hadn’t of worked out and done as much physical therapy as I did as a child. Anyway, now that I’m on Spinraza, and I’m getting the protein that my body needs, being able to take physical therapy has been a dream come true for me. They now taking me out of my wheelchair and starting to work on my legs. This is a new adventure for me and I’m excited to see where this takes me. I know I probably won’t get strong enough to stand using the muscles in my legs, but, if I can get more flexibility in my legs and in the muscles, this will definitely benefit me.
Log in to reply.