Beginning to STEP out of the wheelchair...
and back into my Life! 

Let me introduce myself.  I am Nickie and I hail from Lower Hutt, which is just outside Wellington, New Zealand.  I also have Spinocerebellar Ataxia, the cause is yet unknown, and have been in a wheelchair for four and a bit years, of which three and a bit have been in a power chair. 

When the hospital gave me my recycled power chair, I was told not to walk.  The doctors in A&E told me I must do as I was told or I would end up in care.  I have since found that the aim is to keep people in their own homes.   Anyway, we all know what happened, I began to lose any strength I had left and I was getting fatter and fatter.  Ughh, those muffin roles were awful!

 I began to fall when I was transferring and just knew something had to be done.  The thought of going into care horrified me!  I am very proud and very independent. 

Well, I went ahead with a choice that was against people’s wishes and joined a gym.  Nice girls don’t go to places like that, but something had to be done.  And I had nothing to loose.  The gym was super and gave me a student membership, and it wasn’t long before I realized it was a life long choice.  If I stopped I would loose more than I had when I started. 

In those first few days I was flicking through the National Ataxia Foundation magazine when I came across an ad for www.walkingwithataxia.  Being rather inquisitive, I pulled it up and had a look.  I thought, you know, this Dr. Thomas Clouse has got something.  If he can do all that, I can get a little stronger.

 I started slowly, and used my rates rebate to have a personal trainer once a week.  The idea of this was to make sure I was doing things properly.  I go to the gym three times a week and have a day in between where I do something else.  One of these things is craft (stitching) which is great for hand/eye co-ordination.

 Fairly soon after starting the gym I found I really looked forward to going.  I needed the environment of the gym to make me do the exercise I knew I so badly needed.  I didn’t realize that there would be other spin-offs as well which included my confidence growing, my body functioning better, and my sleeping better.

 The lady I had for the first six months was not tough enough, she seemed to think I couldn’t do anything because of the wheelchair, and I ended up pushing her.  It was a frustrating time because I wasn’t achieving anything.  Then I got a male who was much better and after having him every three weeks, I no longer need a personal trainer, but he still keeps an eye on me.

 I started by using bands for my arms, shaking my shoulders to free them up, and using a leg press.  Well, I soon got bored with that, and added the grinder.  You should have seen people’s faces when I stood up!  It is terrific when you make a mockery of their preconceived ideas.  I knew I was safe.  I had my chair behind me, and was holding on to the handles.

 With Bernie, I started progressing.  He was introducing me to things that strengthened all of my body, and he made a point of straightening up my torso, as we tend to slump in the chair.  My goal changed and became that I could use the rowing machine.  It took a year before I had the strength, and then being given a balancing hand on an off, I would do four minutes.  Now I do 20 minutes at the hardest level, and get myself on and off using my power chair to help balance me.

 I am thrilled to bits.  I have been walking on the treadmill for the last week and a half!  I started at three minutes and the lowest speed possible.  Now I am up to eleven minutes and 1.5 k /h.  It is not fast, but it is important to get the walking right.  Always I have the safety cord attached to my clothes. 

I am also waiting to hear about a mobility scooter, on which I will take a wheeled walker.  Yes, I can now walk a little on a walker.  It is totally unbelievable and quite intoxicating.

 We are all at very different stages, and some of us will always remain in our chairs all day, but we owe it to ourselves to try and strengthen a little.  We are so very fortunate to have this gift of knowledge Dr Clouse has shared with us.

 If any of you would like me to answer any questions you can contact me on brown_bear@xtra.co.nz.  (brown_bear@xtra.co.nz)