My name is Fran. Ive had MS since Sept 2002 and this is now SPMS. Was still mobile up until 3/4 years ago, then I had to start using a stick. Im now housebound and looking forward to sitting outside in the summer. My back garden is a veritable woodland (seriously!). I don’t deal with heat very well hence air con units at home when its too hot. Despite all of this, Im a member of The MS Gym. Would love to hear from other MSers.
Just wondering about you saying you are housebound…?
Do you have a scooter or a wheelchair? These can be borrowed from Shopmobility… How do you get to the gym? Do you have carers who could take you out?
I used Shopmob until I got my own.
Hot weather and MS are not a good mix, I know.
Basically I no longer go outside - a lot of this has been due to the pandemic and not wishing to mix with anyone. Both myself and my husband felt uncomfortable about this - he does the shopping and still wears a mask. Of course things are finally easing up now - and we are still careful. I use a walker indoors during the day as my balance is pretty rubbish - Im unable to walk unassisted at present. I do have a scooter for outside which I use when I can for short distances within my village, Ive also got a smaller one which I used to use when we went to the local shopping mall. Moving around is uncomfortable - the only way to describe it is it feels like Im on a trampoline in my head! (Im OK when Im not moving). The gym sessions I go to are online . Im a member of The MS Gym. Its US based and run by a guy called Trevor Wicken. There are also lots of MS Gym videos on Utube if you want to take a look. Im currently doing a program that alternates beween desk and bed exercises. I have been on more powerful programs but had to go back a couple a while ago after having a flare up/relapses. Its great they are always able to give me help and advice. Ive been with them for about 3 years and never regretted it. A few years back I was walking dogs around the village - still with the weird balance thing but didnt need a stick - this was gradual. I don’t have carers. Ive not wanted them. I can get myself on my scooter if I need to and hopefully if the weather permits. I was driving my VW WAV vehicle until recently. My husband takes me out if I have any appointments. (We did go out to Nymans Gardens recently and I used my scooter there). I try to do lots of video calls with friends and some do come over. It looks like its getting hotter over the next couple of days but Ive got an aircon unit for in here if it gets too bad. So enough of me How about you?? Whats life like for you?
That’s a pretty shocking decline in your mobility and a shrinking of your range in a short time. I am very sorry that things have gone downhill so fast for you, and it sounds as though the pandemic is still affecting your lives. I hope that you soon feel able to be out in the world a little more. I usually find that’s good for morale although my preference is always - always! - to stay at home where I feel comfortable and secure. I am sure you know what I mean by that.
Hi, oh I see now, re the pandemic still affecting you. Glad you do get out a bit now and then chick.
I have 2 carers, plus hubby. can do very little for myself, incl all personal care.
I lost mobility 20 years ago. I am hoisted for transfers. Hands are difficult.
I do get out 3/4 times a week…church, shopping, theatre, visiting friends.
Jesus is my constant companion and life is good.