The other day was a good day for me and my MS.
Not because I felt any better or any different, but because I got a few things sorted, and I dealt with positive healthcare professionals as I did so.
Firstly, I had a hospital appointment with a cheery orthotics specialist to fit me with two foot-ups. Foot-ups are essentially big Velcro bands that fit round the ankle area with a strong elasticated cord, a bit like a bungee rope, that hooks onto the top of your shoe.
I’ve noticed my foot dragging on the floor a few times while out and about, and I’ve even ended up flat on my face once or twice when the stick has failed to save me. Also when I’m fatigued, my feet tend to slap the floor with all the grace of a fully flippered frogman or frogwoman emerging from a lake, so my wonderful physio deemed that I needed some intervention. Foot-ups are designed to bring back some of that heel-to-toe smoothness in your gait, minimising the risk of tripping, and taking some of the fatigue out of walking.
They are a little bit of a faff to put on and I worried that they’d be a lot stronger than they are, but I think the trick is for me to try and ignore them and just get used to my feet regaining some control. I also noticed that I was looking ahead more with them on while I was walking, rather than keeping an eye on the ground immediately in front of me, and that has got to be a good sign. They do take a little bit of getting used to, though, particularly when clutch control comes into the equation, but at least I didn’t stall my car on the way home.
My physio had alerted me that there might be a charge as the orthotics service is now outsourced, but when I asked about this, I was met with a big beaming smile: “No! It’s all on the NHS.”
Good old NHS.
While I’m talking about walking and NHS funding, I read an article at the weekend about Fampridine. It improves walking speed in about 30% of MS patients, but it’s a bit of a postcode-lottery for who can get it on the NHS.
Fampridine has been approved in Scotland and Wales, but it hasn’t yet in England as NICE (National Institute for Health and Care Excellence) have ruled that it isn’t a cost-effective treatment. This may change next year when NICE reassess their decision, but for now it’s only available in England on a private prescription.
It’s going to be an expensive decision for me or anyone else in England deciding to access this drug privately, and it’s particularly galling that it’s available for free in some other parts of the country. Disregarding the ethical and wider economic issues regarding the availability, I’m very lucky that I do have a rainy-day fund for things like this. I thought it worth leaving a message with the MS nurse.
When she rang me back – “Hiya! Guess who it is?” – it was my very first (and favourite) MS nurse. She had ‘retired’ a couple of years ago but has been drafted back in temporarily to answer phone messages and free up the full-timers.
I miss my old MS nurse, so I was comfortable explaining what was going on. She was familiar with my case so talking to her came easily. I mentioned how I’m now stick-dependent; that I’ve been seeing a neuro-physio and that I have just acquired foot-ups. I also explained how I recently spent a weekend in Brighton exhausting myself by achieving a step count of over 11,000 steps a day, but still a few thousand steps behind the rest of my family while they raced off (walked normally).
The long-and-short of it is, I’m going to be referred to a consultant who specialises in movement disorders in neurology patients. If he thinks it’s worth a try, I’ll trial Fampridine for a month at the expense of the drug company. If I’m one of the lucky 30% that notice positive results, which apparently happens pretty quickly when it does, I could get a private prescription.
Watch this space!
It was a positive and productive day all round, I thought. I missed my gym session to go shopping with Mrs Dave, but I squared that away with the thought that I was test-driving my new orthotics so it was a worthwhile exercise and a valid excuse.
I’m just waiting for a day when I can drag myself out of bed at an early enough time to take them for a decent walk.
In the meantime, we can only hope that NICE revisit their decision and follow their Welsh and Scottish equivalents to make Fampridine available on the NHS to the whole nation.
So, it was a day of many words beginning with F: Fampridine, family, foot-ups, friendly faces and so on, but for once it was fantastic that there were plenty of F words missing.