This is Dan working out in the pool at Neuroworx, as Dan was working on therapy there. He really enjoys going there and we think the therapists are top notch. We only wish we could have him stay longer and get more help.
Let me tell you about our day on Friday... but to begin, I would like to start out with a disclaimer so that you don't think I am a neglectful caregiver. (I might be, but I hope you will understand...) Dan has enjoyed quite a bit of independence over the years as he refuses to stay at home and do nothing. He has a recumbent bike that he rides all over the Orem / Provo area. He rides it into stores (it is his summer wheelchair), and if he ever gets into a situation of needing help, he has his cell phone that he can call or text with. He also has ridden the bus by himself from our home, all the way up to the University hospital in Salt Lake City. That required that he ride the bus to the TRAX station, change and ride the Trax and then be picked up by the ParaTransit service which would take him the rest of the way. I worry at times about him, but he is determined to do what he wants and get where he wants to be, and such has been our life.
On Thursday, we made arrangements for him to ride up to SLC to go to Neuroworx on the bus to the Trax station, and then made arrangements for the paratransit service to pick him up there and take him to Neuroworx. He sends me a text message at each point along the way so that I will know everything is going well with him. So I get a text -- "made it to Neuroworx" or "on the bus", and even though I am at work and sometimes tied up in meetings, I know how he is doing.
Friday, however, there was quite a few mix ups... I got him on the bus at 8:12 am and then I headed for work and he was off to Salt Lake City... at about 9:30 am, I got a text message from him that he was at the Trax station, but that the Paratransit service was not there. I called Paratransit, and they told me that I had scheduled the ride for Saturday (NOT!) and so no one was coming... they put us on hold while they listened to the recording of the scheduling call, as I did tell them the schedule was for Friday, not Saturday. I then called my sister-in-law who lives in South Salt Lake City and asked if she could go over and pick up Dan and take him over to Neuroworx. She was happy to do so, and so I called Dan back and told him that she was on the way to get him...
Well - they got over to Neuroworx, and the main therapist wasn't there that day, and they didn't want Dan to stay there (he was early). They were nervous about liability issues if he were to fall or something like that... and they haven't worked with him enough to know what his abilities are. so they asked him to come back at 1:00 for his appointment. When we first decided to go there, we had been told that Dan was welcome to come and work out at the facility at other times than his appointed time, so this was a surprise to us. Anyway -- I am stuck at work and am fully booked until noon, and I can't get away to go get him. So he went over to my brother's home for a few hours and then they took him back at 1:00, and by then I was able to get away and meet them there. So it was a crazy day....
We will meet with the team at Neuroworx to get this resolved, as we are looking for an aggressive therapy program for Dan, and 3 hours a week doesn't cut it. The plan was to allow him to work at the center for at least 4 hours each time he went up. We may have to hire a caregiver to go and assist him so that they will feel better about him being there. Apparently, other patients that come and use the facility do have a caregiver with them that can provide assistance. So we will need to figure this out... We do really like the center and feel that they have a lot to offer Dan. They have been spot on in their evaluations, and are really helping with the time that he has been given. We just need to make arrangements so that we can get more of this good care, as they are really good at what they do.
We will keep you posted as things progress...
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