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Susan at home using a wheelchair

Everything went downhill when my physio stopped

Susan Shand

Before the lockdown, I was making great progress with my physiotherapists. Since then, I feel like I’ve taken a huge step back.

I live in Morayshire in Scotland and I have secondary progressive MS. With my MS, walking is not impossible but I can’t walk far. I’ve no feeling in my feet and get pins and needles in my calf muscles.

MS physiotherapy before the pandemic

Before the pandemic, I’d been going to physiotherapy and it was so helpful. At one stage I was even out of the wheelchair and walking. We were really making headway. But everything has gone downhill again as my physio has stopped.

For example, I did a 2.6 challenge at the start of the pandemic. I decided to walk 26 steps a day. When I was doing my physio I could walk that far, but without the physio I was struggling. I did it, but my legs were dead for two or three weeks afterwards.

Everything changed during lockdown

Over the past few months, very little has happened. The clinic is in one of the local colleges so when they closed, the clinic closed.

I’ve tried to keep up with the exercises at home, but it’s much harder to do without the specialist equipment. The physios were running Zoom sessions at the start of the pandemic too, but I don’t have the space to do them at home. And if I was to fall here, there may not be anyone around to help me.

The physios have started doing house calls now. They’ve been here 2 or 3 times over the past few weeks, but that doesn’t seem to be enough for me.

Since I’ve not been going to physiotherapy, my MS has got worse. I've got more pain in my legs, and I’m getting pains in the joints now that I haven’t had for such a long time. It’s like I’ve taken a big step backwards.

I need more help to move my legs when I transfer from the wheelchair to the toilet or to a different chair. Even when I’m getting in and out of the car, I can’t get my left leg moving. I need a lot more help than I did before.

I live with my parents and my 12 year old daughter. She’s registered as my carer, so she has to do a bit more to take care of me since the physio closed.

MS, anxiety and difficulty sleeping

My sleep has been affected too. I’ve had more trouble sleeping over the last couple of months than I’ve ever had before.

And my anxiety levels have been through the roof. At the start of my MS journey I had some anxiety, but the last few months have been really tough. My hope is that we don’t get put into lockdown again.

I really hope losing the physio as a result of the pandemic doesn’t affect my symptoms in the long run and that I can go back to my weekly sessions soon. But for now it’s going to be a case of trying to do what I can from home.

Everyone with MS should get the support they need, during the pandemic and beyond. Ask your local health leaders to take our pledge now.