I was in NJ for a family event and was able to visit Scud the next day, this past Friday, at Kessler West, his new rehab center. It was an amazing day! As Scud said, his “best day yet.” He was able to sleep really well the night before for the first time since being transferred, and so was full of Scud energy—watch out! I got there after his 2-hour physical therapy session, where, as he told me, they put him on the “Frankenstein Table”. This is a table he is strapped to so that he can be fully vertical, stretched out, allowing his body to be in a more natural position, and to strengthen his tolerance. As they told us, they were amazed that he could tolerate such a long time in this position—that no one can on the first day! Of course, I was not surprised!
We chatted for a bit, with Margaret and Scud’s sister Lori, from Niagara Falls. Lori and I got the downlow from the director of therapy, who told us that he’d already heard about and read Scud’s case (of course!), and will be alerting his staff about Scud’s eagerness to get things rolling.
Scud’s treatment plan will be: first, to get as much of his voice back as possible. He will then get a custom power wheelchair which, through voice activation hopefully, he will be able to move himself around, weightshift/recline (which he has to do every 20 minutes to keep his skin integrity), and –the BIG GOAL—go OUTSIDE! Before the power chair can happen, they will work to advance him from his large and cumbersome ventilator system (requires a wall plug), to a more mobile unit that can go in a large backpack on the back of his chair. Then, he’s FREE! Watch out! Another goal is for voice activation to use the Ipad (his personal goal), and to navigate Facebook. He told his therapist, “I’m a Facebook junkie!”
When his trach is adjusted a certain way, he is able to talk! When I heard his voice for the first time, I got weepy! Which was not the first time all day…..both for his talking, and for me getting weepy ☺
His speech therapy session was great. She had him practicing swallowing exercises and voice practice. The swallowing practice is hugely important, since another big goal is to be eating food—as early as next week!
Then we broke out his beloved IPad, and set up a few Pandora stations (Elton John, Billy Joel, Train, Cold Play). Hopefully someday soon, he will be accessing the IPad by himself.
The final, and most wonderful session, was occupational therapy, because I got to see the HUGE gym. Right where he belongs! The rehab center has an adorable yellow lab who hangs out in the therapy gym, and gets brushed and coddled by the many patients. His occupational therapist talked a lot with Scud about his goals, and how the progression must be slow at first to ensure safety with his breathing, heart function, and ability to tolerate being upright without getting orthostatic. Another OT came over to discuss his requests for a more accessible switch unit he can push with his head to call the nurse (Scud currently has ½” range of motion in his neck/head). His OT suggested that he also have a goal of updating his Scudfries.org site BY HIMSELF. He LOVED that idea, and his face lit up, Scud-style.
Also during his OT session, I met his physical therapist, the one who put him on the Frankenstein Table. She has been there for 26 years, is a marathon runner, and used to be the manager of all the therapists at Kessler. She’s super funny, and talked with us for a long time. While we were all talking, Scud said, “If I have any capability to move something, or do something, I’M GONNA DO IT!” He said that a couple times. Shortly after that, Scud introduced me to a young therapist, who he said just started mountain biking. He asked her what kind of bike she had. She said, “A Jensen (she meant Jamis),” to which he replied, “Well, that’s ok”. He told her he has a carbon Niner ☺
The most moving and inspirational moment came during the end of the session, when we were telling them about the army of people down here, and that there has been a lot of fundraising for Scud and his family. He explained that scudfries.org is now a foundation. Scud said, “We’re not sure what the money will be used for yet (for his recovery), but if there is any left over, I’m going to use it to help other people.” Both the OT’s and my eyes filled with tears, as you can imagine…
It was VERY hard to say goodbye to him, after such a full day. It was also hard to say goodbye to Margaret, the strongest woman I know. Margaret is strong, strong, strong. She reads and/or shows him all of the videos that are sent to his phone. She is staying 3 miles away and stays with Scud all day.
I strongly suggest you visit Scud! If you have any worries or stresses, or are frustrated with your training, or your performance in a race, spend a few hours with Scud, and your life will be put back into perspective. Your priorities will be reset. I know this man whom we all adore will be continuing to surprise us, beyond our greatest expectations, with all that he is able to accomplish,
just as he always has.