You may know Martyn from his previous blogs. In this blog post, Martyn discusses his mobility and medication journey.
After getting a diagnosis I was prescribed Acetazolamide and Topiramate. I was also referred to a MRI scan (all my MRIs have been clear).
Over the years, I have been on a number of different medications but have had problems and side effects from many, or no effect that I could see. Whilst on Topiramate I couldn’t even write my own name at times. Acetazolamide is the only one that helps, and I know it’s helping as there have been a couple of times when the chemists couldn’t get it for a while, and I was much worse.
I have had genetic tests but so far nothing has been found, and I am part of the 100,000 Genome Project, but again, so far they haven’t found anything, but that is what I was told to expect as they still don’t know all the genetic causes.
I also suffer from Visual Vertigo, so certain lights, bold patterns, moving advertising boards and more cause me to go extremely dizzy and collapse – and strangely, if I go to walk into an escalator that isn’t moving, I hit the floor, my brain just can’t handle it.
I’m really lucky because I have a group of people that are more than willing to help if needed, whether that’s helping with campaigning to get elected or a lift to hospital appointments.
As a councillor, people want to see you on their street or doorstep, but that’s really difficult for me as my powerchair only has a limited range and can’t get up and down steps or be used in heavy rain, so I run monthly surgeries. I might not be knocking on peoples doors but I make it possible for them to see me somewhere close to where they live.
I am also becoming more confident about accessibility issues and highlighting them and trying to resolve them.
The council have just had some EV charging points installed and one of the site’s has two wide bays to help disabled drivers charge their cars, the chargers themselves have been chosen to be accessible, but there’s a 4 inch kerb in the way and no route to actually get to the chargers, so I am trying to get level access at those, especially as many Motability customers are choosing electric due to limited choice and higher costs of vehicles.
Don’t let pride stop you from using whatever aids you need. Don’t worry about what other people might think, if it helps you get around safely and allows you to stay as independent as possible, that’s all that matters.
Get specialist advice, Neuro Physio or Neuro Rehab specialists would be best, but Occupational Therapists are a great help too. Using the wrong equipment can be more dangerous than not using any.