Lots of you share your views on issues affecting people with MS in the letters and emails you send us, your phone calls and on our social media channels. Here we focus on a couple of burning issues that have got many of you talking.
‘Will I end up in a wheelchair?’ is often one of the first questions people ask when they are diagnosed with MS. For most people, the answer is NO, but if your mobility is affected by MS, you may find that a wheelchair - or other walking aid – actually gives you the freedom to continue doing the things you love and overcome some of the barriers MS presents. Jerry Burnie, diagnosed in 2004, recently wrote a guest blog about his experiences of using a wheelchair and the positive difference it’s made to his life with MS. We posted the blog on social media, and many of you got in touch to share your own positive stories, which you can read below.
“Getting my walking frame was one of the best things I did. Yes I can still walk but it’s really hard work and the walking frame relaxes my legs, gives a visible sign to others to give me time and space, and increases my mobility. To all those who resist walking aids or are afraid of them, don’t be, embrace the support and extra freedom they give. You don’t have to use them all the time f you don’t want to. It’s just there as an aid.”
“In the end I had a choice – take to my sofa and never go anywhere or use a wheelchair and get on with life. I opted for the latter but it certainly wasn’t easy. Sadly, there are many people who can’t bring themselves to use a wheelchair and miss out on the rest of their lives. As far as I am concerned, my wheelchair has become my legs but that doesn’t mean life is as it was before. Nothing like it.”
“My motobility scooter has given me back my legs and some independence!”
“I compete in dog agility and also have MS. I have been worried that if my symptoms get worse I may not be able to carry on with my hobby which is my social life too. A fellow competitor posted how she has competed on a mobility scooter and has won into nearly the top grade of our sport. What a positive post and such a boost. I am looking forward to carrying on whether on legs or wheels.”
Back in February the country went into meltdown (literally) following the ‘Beast from the East’. Some people with MS find that their symptoms get worse in cold temperatures, while others find that heat affects them. We asked you to share your experiences. . .
“I’ve been functioning better in the winter while I’ve been pregnant. This past summer was excruciating. Hopefully it’ll be better. I haven’t experienced the winter while I was on Tecfidera.”
“I have problems if it’s a cold windy day, 2C or less. I chill very quickly even with plenty of layers and everything shuts down, particularly legs and feet. Never really noticed cold before MS. Unfortunately on summer days if temperature 25C+, I over heat and have balance and other issues. Ho hum....it’s spring or autumn for me”
“Cold is fine, just a few extra layers and some reusable heat packs if needed. Now summer I’m pretty much bed ridden. Need to become rich so I can pay someone to wheel around an air con unit.”
“I found that my MS team didn’t warn me of this issue, either hot or cold weather. I spent a whole summer thinking my MS had deteriorated to later find out that it was temperature dependent issue.”
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- EastEnders MS storyline
My Vespa adventure for the MS Trust
13 May 2019
For his next fundraising adventure, our supporter Nick Jolly will be riding 2,500 miles to Hungary on his Vespa scooter. He tells us about the inspiration behind his challenge.
"When you lose something, it makes you appreciate what you have"
13 May 2019
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.