I am still here!!


I am sorry to say it has been a very long time since I wrote a post, 2016 has been a very up and down year with our family, from great events to very sad times. In all this I lost the urge to write even though I had created posts in my head I could not get them down on paper.

My main goals for this year had been to manage my new wheelchair better and to gain more independence. To this end I entered Royal Rehab here in Sydney to learn better wheelchair skills and to work on my upper body strength. I spent 5 weeks doing intensive physiotherapy, working hard to achieve my goals. Although I am paralysed I am not classed as a spinal injury, my injury is classed as degenarative, therefore I cannot access the spinal injury ward or gym. I found this very frustrating as I was in a ward with hip and knee replacements, spinal surgeries and strokes. All of whom I watch regain their ability to walk, while I remained in the chair, I did feel a bit disconnected from the other patients. It would have been so much better in the spinal injury ward as then I would have been working with others who were similar to me.. health red tape does get very frustrating at times..I did however manage to get much stronger while I was there plus learnt to do “wheelies” and to master kerbs and gutters a little better.. I also did a great deal of stretching as the muscles get very tight from sitting all day. The stretches are an important part of my exercises now I am home.. I did not manage to get from the floor into my whelchair yet but my transfers are much better and upper body strength has improved..

My rehab doctor while in hospital was great as she was a specialist in spinal injuries, what ever the cause. She ensured I had a full physical check up and I was able to ask about any problems I was having .. I also had the chance to connect with a social worker, occupational therapist and dietician. One if my favourite things to do while I was in hospital was using a hand cycle with the recreational staff. This gave a real  feeling of freedom as you sit in it with legs out straight and cycle with your hands. The grounds of the hospital are all set out for doing such things with lots of space.

While there I tried out a Power bike that fits on the front of my wheelchair. This allows me to give my arms a rest sometimes. Plus it gets over more difficult terrain..my Power bike arrived a few weeks ago and it is great. This is me learning to use it!! It does go up to 23kmph but legally I am only supposed to go 10kmph!!!

I am still adjusting to this new life in w wheelchair… there are ups and downs… it can be very very frustrating and for me I get very anxious getting out and about. Until you are in a Wheelchair you do not notice all the rough bits on the pavements or the things that get in your way!!! I hope sometime soon I can except all of this and move on with a full life. …I know that others  do but it does take time … I will get there…

One thing I am very happy about is that our Facebook group is growing. I feel sad that others have Radiation Induced Lumbar Plexopathy, but it is a great help for us all to connect with others in a similar situation…


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8 thoughts on “I am still here!!

  1. Hi Helen, it is great to receive a blog once more and hear how you are going. I can’t believe our health system. Where is common sense? I think that is an issue to pursue (or maybe for Adam if you are too busy). I hope your next blog is sooner rather than later. Cheers Jan.

    Liked by 1 person

    1. It is not something that will change..my dr was very sympathetic to the situation but a line has to be drawn somewhere!! Sadly when you have a rare problem you end up belonging no where which is very hard…it is something I just have to except or drive myself crazy!!! Will try to write more again xxx


  2. It is good to read a post from you. We all seem to have times when time isn’t available.
    You made the comment, “Although I am paralysed I am not classed as a spinal injury, my injury is classed as degenarative, therefore I cannot access the spinal injury ward or gym.” We have the same issue in the US. Only recently did one of the large rehab centers begin accepting patients who are paralyzed from MS. Resources are too hung up labels and not responsive to actual needs. Thanks for saying this so well.


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