Maybe? Not Yet

When is the right time to start using a wheelchair?

It’s something I have been contemplating a lot.  You don’t want to start depending on one too soon.  But then, should you increasingly limit what you can do simply for lack of one?  And what to do with the pride factor?

My mobility has been on the decrease. I can walk short distances, but even walking up to my daughter’s school, just around the block, is now too hard.  I use a cane most places I go.  It helps me a little with balance, gives me something to lean on when I feel weak and has a little fold out stool so I can sit when I need to.

Walking anywhere, with the cane, or without is exhausting for me. It takes the lion’s share of my energy. I can still drive, which I am grateful for.  It’s just that doing much of anything once I get to my destination is so hard.  I’ve been using the complimentary scooter at the mall for the last few months, it’s been a big help.  But when should I start thinking about my own wheels?

When I went to Adelaide last weekend, I organised a hire chair for the duration of my stay.  I didn’t want my limited mobility to stop Erica and I from getting out and enjoying the city. I also didn’t want her to have to push me around, I’m an independent sort of person, so I wanted to ‘drive’ myself.  Walk on Wheels didn’t have any scooters available, so they hired me an electric wheelchair.  I figured it would give me the perfect opportunity to try out using a chair for future reference.  It was vastly superior to a scooter in terms of manoeuvrability; turning on a dime. Somehow, because it is smaller than a scooter, it is less conspicuous too.  It cost me $25 a day to hire the chair, plus fully refundable deposit and a delivery charge. I had the larger “Maverick” electric chair, I’m a bit of a big bird. It was the perfect size for me.

Me with Maverick(3)

The Maverick and I got acquainted very quickly!  So easy to move around, steering is a doddle and the joystick style controls really are intuitive. I liked the little horn.  It wasn’t so loud it scared people but was enough of a beep to let them know someone was there if I needed to discreetly get their attention.  I took the chair for a spin down to the tram station.

Trams in Adelaide are perfectly set up for people in chairs.   The stations are all ramped, and once on the platform, you just wait on the little blue mobility park.  As the driver approaches, he waves to let you know that he’s spotted you.  Then he pulls the tram up, hops out of his seat and lowers the ramp (some trams have folding ramps and others have pull out ramps).  There is a spot in the tram for the chair and an accessible stop request button right next to your park. The driver asks where you are hopping off and returns to assist you off the tram when you reach your destination.

Victoria Park Tram Stop

During my stay, I took the tram to Glenelg (about forty minutes away), Black Forest, and to hop around the city centre. Because I could power down my chair while in the tram, I was able to save battery power too. The excellent tram system saved me and my chair a lot of energy!  I was really impressed with the warm and friendly staff on the Adelaide Metro Transport system.  I’m sure it isn’t policy, but every time I went to pay for a ticket I was waved away. So nice to be treated with such kindness when you are staying in a foreign city!  Whoever complained about Australians hasn’t visited Adelaide!

I encountered a few problems with accessibility along Jetty Road in Glenelg.  It’s a shopping street that leads to the famous jetty and is lined with gorgeous shops, at least half of which I couldn’t get into with the chair.  But Adelaide Central caters beautifully for people in chairs.  Almost all of the shops I went to in Rundle Mall were easy to navigate without damaging the furniture!

I felt liberated in that chair. I could go where I wanted to go without worrying that I would ‘crash’ mid outing and have to get horizontal in a hurry. I felt free to move at a pace that was more natural than my own snail’s pace.  I could relax and enjoy my surroundings more.  It was slightly strange to be short though!  I am six foot tall when I stand on my own two feet.  But it was so good to be able to MOVE distances for longer. I loved it.  Being in a chair is still taxing, so you still need to budget your energy, once you are used to how much it takes. But oh, not nearly as spoon bending as trying walk distances. It felt so good to feel part of things in a much more active way!  Now that’s ironic.

We have decided to wait and see what happens in the next wee while.  In spite of the huge difference in what I was able to do when I was in a chair and my happy experience of things in Adelaide… I am just not ready yet. Our big hope is that the steroid therapy and possible IVIG makes a difference in the area of muscle weakness and neuropathy.  If that happens, I might be able to be more mobile on these legs of mine and the whole need for wheels might diminish.  Here’s hoping!

If it doesn’t work and things continue to decline, we’ll just have to find some snazzy wheels for me to buzz around in.

If you have Dysautonomia, or another medical condition that requires you to use mobility aids, do you use a chair? What made you decide it was time?  How do you feel about it?  Does it change the way people relate to you?  So many questions…!

FREEDOM!(1)