Hi! I’m new to speaking online and also new to MS after being diagnosed with Secondary Progressive last year. I haven’t any medication apart from Vitamin D and B12 injections. This is all a complete shock to me as when I began to feel my legs were ‘weird’ when walking (about 4 years ago) no-one believed me and it took a while for the GP to do anything. B12 deficiency showed in my blood tests at the time, so I was treated for this and this is still continued today although I’ve been told it won’t help the MS.
My main concern is that I live alone. My family are miles away and I have a couple of friends who I can talk to now and again. Again no-one really understands my day-to-day life. I’m currently walking with a stick, but my legs are so heavy that I can’t stand or walk for long. I can still drive, but I don’t because I can’t walk when I get to my destination!
Any advice regarding living and managing alone would be very helpful. I have spoken to my MS nurse, but because I still have my driving licence she thinks I can still get out and about.
Crumbs, that’s a shocker for you. I am sorry. I’m about your age but 23 years ahead of you in terms of time since MS dx. How long do they think you’ve had it?
Hi alison100! I’ve had odd symptoms for about 20 years, but these were overlooked by GP’s - eg. I was numb down one side after a C-Section, I’ve had pins and needles in one lower leg, vertigo (I even saw a neurologist with this, but MS not considered), weak and tingly left arm. I think I must have had MS all this time, so on the one hand I’ve been lucky living with and recovering from these, but it’s certainly changed my life now!
Yes, maybe they could have done a better job joining the dots, but no use worrying about that now, I guess. Whether it would have been better to know or not know is all water under the bridge. What a shock for you, though.
Hi, maybe think about getting a small scooter. Or what about using Shopmobility? I did so before buying my own scooter.
You can book a scooter and hopefully, someone would bring it to your car and collect it when you’re done.
This worked really well for me.
Boudsx
Sorry for late reply. As PBMS says, would a small mobility scooter help? I have a folding one from Careco - a ‘Minimus’, not cheap but it folds down to a very small size and with a bit of effort can be put in the boot of a car. I use it a fair bit for shopping and its small enough to take into cafes, shops etc. Hope this helps. Is there an MS Society Group near you? I’ve not used my local one but they meet up a couple of times a month for coffees, cake , meals etc
Thank you for your advice. I’ve looked into Shopmobility (didn’t know anything about it), but sadly my nearest is miles away - another county! Sounds a great system though.
Thank you for your post. Sounds good - I’ll have to do some research into fold down scooters. Also, yes, I’ve looked into MS groups and there is one I can get to, not too far away - I’ll have to get myself there and see what goes on! Thank you again.
Happy to share my experience of using the Minimus and answer any questions. It’s not the most comfortable of scooters but I use it in various places - from going around the paths of local RSPB reserve , going round supermarkets and going to cafes and restaurants