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Posted 2018-09-01T05:41:10Z

Sept 1 - Changes

Since the last post, there are a number of updates and changes so I really hope I capture them all. I've been meaning to write this for the last two weeks but it's been stressful overall and I knew I wouldn't do it justice

We are starting to change course a bit. We flew out to San Diego to check out the Neuro-Ifrah approach to treatment for adults who have suffered a brain injury or stroke. While it was only a single week, it was definitely eye opening and overall it was totally worth while. They looked at some of the things we were doing in the past in outpatient here in Tampa and steered us in a different direction. It was also nice to have 3 straight hours of therapy fully dedicated to Thom 10 times over a week. They focused more on techniques/exercises to build up trunk control, scooting, scapula mobilization, exercises to facilitate/inhibit tone, alignment of the pelvis. There were no therapists setting him up on a bike then walking to the side to talk to someone else while Thom had a machine move his arms for him, no one forcing him to walk improperly (for what it's worth, even I was doing this as I was following what I saw from the local therapies), thankfully there was no one yelling at him (yes, this did happen at TGH in inpatient, I'm still livid about this as no real action was taken), no nuts and bolts on a board, no rocking knife, etc. If anyone is curious on any testimonials from Neuro-Ifrah, the best example could be found here: and check out NEURO-IFRAH® VIDEO A. We actually met this gentleman during our visit and he highly recommended doing this as much as possible. This person is lucky enough to have been able to do 40+ weeks of treatment. He went from not being able to use one side really at all to being fully independent and even playing guitar. I know Thom could gain so much as well if we were capable of doing the same but there are so many obstacles in our way, with the two biggest being time (I have two jobs) and money (it's out of pocket). 


In the couple weeks since we have been home, we are focusing more on the basics and trying to build that core up and get a good foundation for him. I will admit my knowledge is incredibly limited when it comes to therapy but thankfully they gave me just a few exercises to practice in the interim before we can get him back out to California. The folks at Neuro-Ifrah did recommend trying to continue therapy here, preferably with someone who is certified from their program but there is no one truly local. I opted to contact a therapist that I've raved about in the past instead. Thom absolutely loved working with him and thankfully the feeling was mutual. I'm glad I waited to write this post until tonight because the therapist was able to do a two-hour session with Thom and it was absolutely awesome. He was very receptive to feedback and agreed with much of the information that was passed on to me from the center in San Diego. Thom is really looking forward to the next sessions with this therapist. For now, we are doing a two-hour session once a week as the therapist is quite busy as well.

Even though it was just a single session so far, I do like the direction that Thom is going in PT and I think it will help him so much for our next visit to California, this time to Foster City, which outside of San Francisco. I am shooting for two sessions out there, a single week in November and a two-week session in late January. After January, I actually do not know when I can get him back out there assuming he makes some good progress. My schedule is very booked until (hopefully) mid June with the Lightning. Couple this with the intense speech therapy in October, he's going to be incredibly busy. I'm not sure how often I'll be able pull this off given all the factors involved but will try as for as much as humanly possible, even if I end up burning the candle at both ends. 

In other news, Thom is also getting a new wheelchair that will be ultralight and easier for him to maneuver. Hopefully he wont need it for too long but in case he does, it should be leaps and bounds better than the generic chair he has now. His current chair has started to fall apart after a year and even the loaner he has is already breaking (well, actually NOT braking) after just a week. 

Also, last summer I submitted an application to get federal grant money to help with respite care and there is some good and bad news regarding this. Bad news is I cannot get respite care because I already leave Thom alone while I run errands and *attempt* to take care of myself and the dog. Go figure. Good news is that instead I can get companion and personal care, and while it's only 6hrs vs. the 12-15hrs a week, something is better than nothing. I will be shooting for this person to come once or twice a week for 3-6hrs a visit. I did try someone out this past Thursday and that was a massive failure. They were supposed to be here at 4:30pm and leave at 10:30pm, instead they got here at 5:10 and left at 9:20 and didn't do half of what they were supposed to. Hopefully this next time is a bit better because I could use all the help I can get as it's me and only me doing literally everything at the moment.

Speaking of help, if anyone would be interested in coming to watch a Bucs or Lightning home game at the house with Thom while I work the game, please please please reach out. All I'm asking is to hang out with him and refill his drink or give him a snack. I would really appreciate even the most basic help so I don't have to stress during the game knowing Thom is OK. For example, during the two preseason games for the Bucs, there were a couple times he had to reach out to me: the room was a bit warm for him and not even an hour later, the power went out and he was sitting in the dark. Thankfully I can access most things in the house remotely but on the off chance I cannot, having someone here to help would be incredible. 


I do want to thank everyone again for any donations to helping Thom recover from this devastating stroke, from those who donated to a year ago to those very recent gifts. The bathroom renovation from last year is even paying off in new ways with the home therapy as there are a number of grab bars to assist with standing and it's just generally WAY more wide open compared to the 28 inches of room from the counter to the wall that we previously had. Everything recently has been solely dedicated to therapy for him as everything is now out of pocket, sadly. Even new braces that were recommended by Neuro-Ifrah were not initially covered by insurance as the vendor does not accept insurance so it's on me to fight with them to get that reimbursed and we all know anything related to the medical field is grossly overpriced. 



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