Christmas reflection

Every muscle in my body is aching which is strange because I can’t feel most of them! Six gruelling months of therapy and recovery has finally come to an end. I am taking 10 days off to rest over Christmas. I’ll spend this time in Marbella with my family returning to Guttmann on the first of January. I am really looking forward to just relaxing and being out of a hospital environment.

This last week has been particularly exhausting both mentally and physically for many reasons. Firstly, being the last week of 24 weeks before Christmas, it’s always going to be a struggle to keep it together for the last few days. Secondly, I was unhappy with some aspects of care and attention I was receiving from the various departments throughout the hospital adding unnecessary stress to the situation. Thankfully all matters have been resolved and dealt with accordingly. This brings me back to the lads in the NRH whose experience in dealing with spinal cord injured patients must be acknowledged. Experience can’t be learnt from a book or bought, it purely comes down to time spent with patients. They have seen how the treatment has changed over the years and they have acquired the skills necessary to treat patients.

And finally, my work load here has been increased with the introduction of the lokomat. For those of you who don’t know what the lokomat is, put simply it is a treadmill with robotic attachments that move your legs through a walking motion. Typically the lokomat is not recommend for patients with high complete injurys such as myself. But I have said this before, I don’t care which term they are using to best describe my injury, complete, incomplete, C4, C6, T9, S4, AISA A, AISA D, whatever, right now it’s not important to me. I’m not expecting any miracles and maybe I am being ignorant to the harsh reality of a spinal cord injury but when you have been reduced to near nothing physically, you don’t have anything to loose. I want to be given the opportunity to try everything that is available to me. Then I’ll decided what term best describes my injury, once I have exhausted all possible options of course.

Anyways back to the lokomat. I have been assigned one hour each day between 10 and 11. This will continue for 6 to 8 weeks. On Friday I “walked” 860 meters! I’m not getting carried away with this because the movement is completely passive and I understand that and I know what that means. Every step I take I am trying to take that step myself. My brain is trying to tell my legs to take the step. My brain still has the ability to send these signals, my legs can move I see them move everyday unvolinteerily by spasms. The brain and legs have just lost their ability to work together. The link between the brain and legs is gone. It’s a wiring problem! Why can’t I be rewired?!

Now although this exercise maybe considered “pointless” to most with experience in this field, my legs are feeling strong, feeling used, not just dead weights hanging off me that get in the way. They feel like they are part of my body again! I have been speaking to a guy here in a similar situation as me and he has been on the lokomat for several weeks now. He tells me that although the movement is passive the muscle mass on his legs has increasd. I expect the same to happen when I return in the new year. How is this exercise pointless?

I am not sure why I am putting so much effort into my legs when not being able to walk is the least of my worries. My hands and fingers are my main concern at the moment. They have little or no motor ability. It makes everything so much more difficult and makes me so much more dependent. I don’t even know where to begin with the basic things that are such a struggle. Dressing, showering, eating, writing, turning pages in a book, opening bottle caps…. All basic every day things that have become difficulties with lack of hand function!

A typical day in Guttmann Institute Monday to Friday
08.30 get up, wash, have breakfast.
09.30 motomed, a bike which powers your legs in a circular motion, preparation for the lokomat.
10.00 rigged up to the lokomat, hopefully no dizziness, “walk” for up to 50 minutes.
11.00 swimming and hydro therapy.
12.15 stretching, balance work, electrical stimulation.
13.30 lunch and a nap.
15.00 occupational therapy.
16.00 transfers and dressing practice.
17.00 finished!

Saturday
11.00 motomed.
12.00 slings.
13.00 finished!

Sunday
Exhausted!

Thanks to everyone who have supported our Christmas song. “All the lights” was written by a family friend from Wexford, Alan Byrne. Alan approached me in September with this great idea and he wanted my family and I to be part of it. We were only too delighted to be involved. So I had to find a suitable venue and time to do the recording. When you are going through rehab in the NRH you and your family are assigned a weekend in Villa Maria, a house on the hospital grounds, before your discharge date. It gives your family a chance to understand the daily tasks involved in taking care of someone with a spinal cord injury. If you run into any difficulties the hospital staff are not too far to come over to assist you. It is a fantastic facility. I knew this was going to be tough on my family as they were going to experience just how dependent I have become. I needed this weekend to be fun and be remembered for a better reason. So the week before I sent out emails asking all involved in the song to arrange to do the recording in Villa Maria. It was short notice but sure enough everyone managed to be there! We had great fun learning the words and singing the song, adding a bit of early Christmas cheer to that sunny mid October weekend! Thanks Alan, you made that weekend a lot more enjoyable.

So it is time for a break. For those of you taking part in the swim on Christmas Eve in Currabinny I hope it is suitably cold!! Happy Christmas to everyone on the NKT committee. All your hard work is keeping this recovery alive and I really do appreciate everything that you are doing. Also to everyone who has been involved, organised, donated, or simply showed up to the fund raising events, showing your support in numbers, Happy Christmas to you as well! And I would like wish everybody a healthy, Happy New Year full of fun, happiness and smiles! 🙂

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On the lokomat