Here I am; the large smiley bloke in the wheelchair. I don’t have a picture here because I’m a narcissist. I’ve posted the picture so that you have a better image of how disabled I am. This is about my wheelchair accessible adventures, with other bits thrown in about my MS journey.
I’m sharing my travel experiences so people can see how a fat bloke in a wheelchair copes experiencing the travel delights of the world in a way that an able-bodied person doesn’t. So, that the bumps in the road that I’ve experienced can be avoided by others, making their travel experiences ‘smoother’.
Different Strokes for Different Folks
Wouldn’t wear hiking boots to run a marathon? No one person’s disability is the same as another person’s. I have gotten to know many people with MS over the years, and, surprise surprise, none of them have MS symptoms that affect them in the way that mine affect me. This blog is my warts and all explanation of how my MS, my disability, affects me; not how MS affects people generally, and certainly not about a totally different disability, e.g. blindness.
I won’t write about the limitations that other people experience through their disabilities when they come across, for e.g. a hotel room adaptation. I can only comment on how I’m affected. So I’d better start off by explaining what disability is for me.
Me & My MS
I have MS, a progressive, debilitating disease of the central nervous system, (your brain and spinal cord). It can cause problems with vision, balance, mobility, muscle control and other basic body functions. Hurrah! I have a tick in every box.
There is no cure for it; I’m stuck with it, so I’ve had to get used to it. No two people have the same MS symptoms; e
I was diagnosed in 2001, but with syptoms dating from 1999. So, I’ve had a long time to get used to being ‘health labelled’, with all the insurance and bureaucy limitiations that ‘labelling’ brings; and, a long time to experience and get used to various parts of my body gradually shutting down and stopping.
Progressive is the ‘keyword’; what I’m like today is not a pointer to how I might be in a month, a year, or five years’ time. I’ll update the blog as my condition progresses.
What am I Like Now?
I’m still a manual wheelchair user, (just). My blog went live on 02/02/2019. As of 05/10/2019, my MS has progressed. The progression isn’t an improvement. That’s not what MS does. I’m worse today than I was in February 2019. As things stand today:
I still have reasonable upper body strength. But I no longer have core strength. I struggle to maintain an unsupported sitting position.- I sometimes can twist open the tops on most screw-top bottles. And I can sometimes manage most ring pulls on cans. I say ‘sometimes’ because I can do these things on my good days. But my good days are getting less and less frequent;
- I can still self-propel my wheelchair. But primarily this is now around the house. And only for minimal distances outside. Gone are the 2km pushing sessions. My pride, (selfishness), is dented by the reality of my situation. I still believe in the ‘use it or lose it’ mantra, and I still have the lungs to push myself. Unfortunately, my spastic arm now means that I can really only push strongly with one arm. This is great if you want to go in a constant circle, but…;
- I can’t climb into a bathtub – I can’t lift either of my legs to do this. Thank God that I hate a bath. A wheely shower commode has been my salvation for the last 6 months;
- I can transfer from my wheelchair into a chair, onto a bed, etc.;
- I have shocking balance and frequent falls, (and a ‘Careline’ subscription so I can be scooped up when I, (frequently), fall in the house). It’s a good job I have enough blubber to protect me when I fall;
- I can shuffle, inside the house AND with the assistance of a zimmer frame for about 0.5 to 1.0 metres;
- I can still drive. BUT only in my car. It’s been adapted so it can be driven by hand, no feet are involved. Also, I continue to drive only if there is a 3rd party with me to load and unload my wheelchair into and out of the car. This is one of the biggest changes. And the one that’s probably robbed my independence most. So, if there’s no ‘willing’ 3rd party to call upon, I can’t go out of the house. Period; and yet,
- I can still laugh at
myself .
Update: Me in May 2022
Oh boy, have things changed. As things stand in May 2022:
- I am now in an electric powerchair.
- I am struggling to transfer between my (hospital) bed and powerchair. Depending how I am at the moment of transfer I use a mixture of banana board, ReTurn or hoist to transfer – this is the main issue that is impacting my ability to travel. We’re getting around it by travelling more with friends, (it gives Lisa the comfort of many hands making light(er) work). A mobile hoist might be a future travel solution, but at 40kg ‘mobile’ becomes a bit of a stretch.
- I no longer work. I am consensually, medically retired.
- I still drive. I have a fantastically adapted WAV (Wheelchair Accessible Vehicle) – I’ll do a separate blog on this so you can see just how fantastic this is.
My Adventures
Despite my disease progression, I still travel. Mainly with my wife, (my fantastic carer), but sometimes as a family unit, with my two great teenage children. They accepted Dad’s ‘funky’ feet years ago, and they all help with the pushing – I am now a
Does There Need to be a Reason for Iggy Pop?
I’ll continually revisit my lust for travel, (my lust for life). The last 8 months have made me realise that at some stage, (I have no idea when this might be), it’s likely that I’ll need full-time professional carers. At this stage, my ‘boner’ for travel will likely go limp, and I doubt there’s a type of Viagra on the market that will rekindle my travel limpness to give me a travel stiffy. But, I’m not there yet.
My kit
My wheels – my ‘legs’ – continue to change. Some of the blog posts were written when I was in a folding wheelchair. In October 2018, I transitioned to a rigid, manual chair – a Quickie Argon 2. In January 2020, my progressing MS moved me out of my manual wheelchair and into an electric power chair – a Quickie QR200. As with my manual chair, this is through the amazing, continued support of the Bolton Wheelchair Service. You are a Godsend.
The Freewheel is Dead…
The readers that have been with me for a while, know of my love for the Freewheel. I called the Freewheel my ‘bit of ESSENTIAL kit’.
The Freewheel retains a special place in my heart – it opened my eyes to the terrain a wheelchair can traverse. Consequently, I had to look for a new piece of ESSENTIAL kit. I found it.
…Enter the Batec From Stage Left
As with the Freewheel, the Batec Mini has a large front wheel that lifts my front wheelchair casters off the ground by a couple of inches. This enables me to wheel over most surfaces.
Add to that a lithium rechargeable battery that gets my wheelchair up to speeds of 18km/h for 12-15 miles a charge. It’s a cure for any miserable day. If you’re curious, click on the Batec web link on the front page of my blog. But, I had too little time with the Batec – when the manual chair stopped, so did the Batec fun.
My ‘legs’ are now my Powerchair – the Quickie QR200, and it is amazing.