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  • My Weekly Journal – 10/15 Through 10/21

    Posted by michael-morale on October 21, 2018 at 12:42 pm
    Monday, October 15, Through Sunday, October 21 – What an unbelievable week this was. Four months ago, I was praying for rain. Now, I am praying for it to stop. The North Texas area has received so much rain over the past three weeks, it’ll take at least three weeks for the ground to start drying up. My yard service hasn’t been able to mow my yard for the last 2 weeks due to the amount of rain, so to say that my grass is eyeball high to a giraffe, would be an understatement. Overall, my week went very well. My muscle strength and my energy level is as high as it’s ever been and I feel terrific.
    On Thursday, I went to workout with Laura and her two physical therapy students Katherine and Lauren. This was the last week that Katherine and Lauren will be at Green Oaks Physical Therapy. For the past six weeks, they have been working side-by-side with Laura as we do all of my exercises. Watching them learn from Laura has been a great deal of fun, and having them participate and actually working hands-on with me, has been a great pleasure. Seeing their enthusiasm and their willingness to help, proves to me that they will be extremely successful physical therapists. They only have a few more rotations to go before they graduate next December, and I wish both of them nothing but the best. Katherine and Lauren, if you’re reading this journal entry, thank you for all your help and good luck in your future endeavors. On Thursday, Laura, Katherine, Lauren and myself met with the ATP with the wheelchair company so that he could perform all of his measurements for my new wheelchair. He had to do this during my workout with Laura, because a physical therapist must oversee and approve everything that he does with regards to the measurements of my new wheelchair. I normally workout from 1 PM to 2 PM, but on Thursday, we spent this hour working with the ATP taking all my measurements. After this, I did my workout from 2 PM to 3 PM. After transferring me to the therapy table, Katherine and Lauren worked on all of my stretching exercises for my quadriceps and my hamstrings, and they also did all of the flexing exercises on my feet and my toes. Even though we didn’t get to do an entire hour of physical therapy because of the time it took to take the measurements for my new wheelchair, we did get in a good workout, which included all of my exercises that I do for the muscles in my neck. A few of you have sent me emails asking me why I admire Laura as much as I do. What many people do not understand is that usually, physical therapists work with two or three patients at a time. They get somebody started on an exercise, then they go to another patient and work with them to get them started on another exercise, and then they float back and forth between their patients, overseeing and making sure that they’re doing everything correctly. Laura spends the entire hour dedicated only to me. She can’t have me start an exercise and walk away. She has to stay with me and work through the exercises with me so that I can complete each and every workout routine and exercise. I know this makes it tough on her to dedicate the entire hour to me, but she never complains and she always finds time in the week so that I can continue my therapy. Since my physical therapy will probably continue for the rest of my life, any physical therapist that works with me is going to have to do the same thing that Laura does. I hope this explains the reason why I admire Laura the way that I do, because without her, and all of her staff, I would not be able to do my physical therapy like I’m doing now.
    In this week’s video, I go over what happened with me during the past week, and I also share exciting news regarding Avexis pharmaceuticals. Avexis just announced this past week that they are seeking FDA approval for their drug AVXS-101. With the success of their clinical trials, they are seeking FDA approval to go from clinical trial status to an actual treatment, similar to what Biogen did with Spinraza. I share part of an email that I received regarding this topic, and I also link the entire article in the description in my video so that my subscribers and followers can go and view the entire article for themselves. I also detail the results of my appointment with my pulmonologist that occurred on Tuesday. I explained the tests that they ran on me along with my new cough assist machine that the pulmonologist is going to prescribe for me. 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. I hope that you had a great week and I hope that your upcoming week is better than the previous. God bless you, and I’ll see you next Sunday.
    deann-r replied 5 years, 5 months ago 2 Members · 1 Reply
  • 1 Reply
  • deann-r

    October 22, 2018 at 11:54 am

    I think we should take bets on how long it’ll take to get your new chair, lol.  Did they give you a time frame?  Just curious, what company are you going through?  Most importantly what color did you go with?  It’s always so exciting, and also a little nerve wracking.

    When you get your cough assist I’d certainly recommend getting used to it so when you get sick you’ll be comfortable with it.  Not that it takes a lot to get used to but trying something new when you’re sick is just undue pressure.  Did you find it beneficial to meet with a pulmonologist?  I actually don’t have one, but debating seeking one out.  Unfortunately none around here would be familiar with SMA.  I did do a pft prior to Spinraza and another about 6 months later.  Did you do any tests before Spinraza?

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