Has anyone else here loved long walks in the great outdoors before MS entered the picture?
Last summer I was still able to go on long walks without any problems. In March this year, I was diagnosed with MS.
Now, in December, I can walk for about 30 minutes at most. After around 20 minutes my legs become extremely heavy, and shortly after that they feel too weak to continue — sometimes even to stand up properly. I’m finding this incredibly hard to cope with and deeply miss being able to head out into nature.
I love photography, and to be honest, looking at my beautiful old photos hurts — they remind me of what I’ve lost.
My question is: what can I expect in the months and years ahead?
Will the amount of time I can walk gradually continue to decrease, or is it possible for things to stabilise?
I know no one has a definitive answer — not even my neurologist — but I would really value hearing other people’s experiences.
I have spinal-cord dominant MS. For me, everything started with bladder problems, which eventually progressed to full retention. I’ve been using intermittent catheters for five years now, and I cope well with that - no problem.
But the idea of a life without walking in nature feels almost unimaginable…
I can empathize with not getting outside and immersed into nature. If you’re not able to physically manage to much walking now would you be up to trying a wheelchair? None of us want that for ourselves, although there’ll be plenty amongst us who have no other options but for that. You might be able to find a suitable wheelchair option for yourself that would enable you to get out there taking the photographs that you so obviously enjoy taking.
No one knows what lies ahead, but if you are open to adaptation you can carry on living a full and interesting life.
I still manage to do most things with crutches or a walker. Sitting down on a walker gives a much more stable platform for taking photographs than trying to keep your balance when holding your camera.
Many places, such as NT properties, loan mobility scooters allowing longer trips. Again, the mobility scooter provides a stable platform for photography.
We can be stubborn and end up stuck at home or live and adapt. Early adoption of aids means you adapt rather than wait until it is too late when you are utterly reliant. Vary how you do things.
Having to plan ahead is something that is difficult to get used to, but sitting at home in the front of the TV is all too easy.
Morning milojka, I too was the same before MS came along, loved walking with my hubby in the Dales and Northumberland, Whitby, loads of different places, but not any more, haven’t done for years.
When walking became more difficult I was given a great bit of advice from an MS physio, she mentioned a wheelchair to me, oh the look I gave her, but she didn’t mind, we’d known each other a while by then, anyway her reply to me changed everything, she said, “well Jean you can sit here looking out that window, or you can get a chair and get out” that was the push I needed, we bought a manual chair, but like a lot of here I’m very independent and so ended up getting a scooter, best thing I ever did, now I can enjoy certain walks with hubby and little dog in the right weather.
No one on here can tell you how things will be for you, my advice, take one day at a time, listen to your body and just do what you can, good luck to you.
Jean x
I have always had an active lifestyle. Always busy doing something, I am not someone who would be sitting at home and watch TV. In fact I don’t have a TV
I am still active now for as much as I can. I walk every day - short walks of just under 30 minutes, and I do exercises at home. (Continious walk of 30 minutes = crash)
Where I walk there are no trails or paths - it is not accessible. Stunning views though.
How long ago did you start using crutches and a walker, do you remember how it felt when having to do that? How long after the first symptoms of weak legs did you have to transition to walking tools? I hope you don’t mind me asking.
I know that I can’t compare me with anyone else - but I am interested in how others have adapted to their mobility getting worse and worse.
I can still walk - and I work 2 or 3 days a week. So I don’t think I need a wheelchair chair. I am probably lucky compared to many others with MS. I hope I am not offending any one who is not as lucky.
I have found so much joy in immersing myself in nature, very far away, on my own. These places are not accessible in a wheelchair - and it feels like a huge loss.
And long may that be the case for you, without the use of a wheelchair. Like yourself I don’t use a wheelchair either. Lots of others here have no choice in that if they want to get out and about. But, as @crd said, it’s about making adaptations and it’s never too early to make them whilst you are still able.. mobile.
Wishing you well @milojka and hopefully you’ll be able to get out in the wild with nature taking those photographs for many years to come.
Hi @milojka have you been referred to Physio yet, if not ask your MS nurses to put in referral to a Neuro physio.
I have similar to you, heaviness after about 20 mins continuous walking and struggle to lift leg/foot at all after about 30 mins. So I get through work okish but walking dogs or leisure walks was really hard.
I got given several months of physio and through them got a referral for a FES machine (which I initially struggled with but now love thanks to help on this forum). This week with the FES I have managed to walk for ages and I now know why people rave about it.
Hi @Cavworld I am in a very remote place, which comes with poor health care - a nurse that doubles as a MS nurse who hasn’t been very helpful, and no access to neuro physios and the like. Very greatful for the MS Society and the availibility of their support.
Your story is so beautiful and hopeful - just brilliant and I am so glad you were helped. I didn’t really know what a FES machine is - it seems to be aimed af people with dropfoot, which isn’t me.
I am on the list to get Fampyra though, but at the same time was told I can’t expect a big difference in the walking distance. We’ll see!
I wish you many long and happy walks with your dogs!!
I’m another one who loved walking and walking holidays. On the subject of DMD’s here’s my personal experience. My mobility had been damaged by the time I finally got on a highly effective DMD, unfortunately. But for the past 12+ years, I have had no more relapses and while (as you say) you an’t get the toothpaste back in the tube once permanent damage is done, the absence of relapses has allowed me to strengthen those bits of me that do work. Over recent years my walking range has definitely increased a bit as a consequence - not because a miracle has occurred, just because the bits that do work can compensate a little bit for the bits that don’t. If you’re lucky, that is. My proper walking days are over, alas, but then I have had MS a long time. But I an do way more than I feared I would be able to, in the middle of my last relapse when I could barely shuffle along. With a couple of hiking poles, the hills and woods are within range now, just not for very far. It’s a terrible loss, though, and it takes some dealing with. I really feel for you.
I was a late developer only diagnosed at 62 and I would not have identified anything wrong before 60.
I noticed my range had reduced but GP advised to take more exercise! Difficult to be certain as I had broken a metatarsal a few years before and had attributed my problems back to that.
I had an undiagnosed relapse at 61 which I interpreted as post viral syndrome and a more severe one when I was hospitalised after falling over repeatedly and was diagnosed in a day. After IV steroids I recovered very well. I took to using a trekking pole which gave me a third point of contact for proprioception. COVID did me no favours through reduced activity and I added aids to allow me to resume life. Finally succumbed to COVID and it resulted in symptoms akin to a major relapse from which recovery was only partial.
How I felt was overshadowed by the impact of COVID on the world around me.
My message is adapt and survive. Enjoy what you can do and don’t grieve what you can’t. Perhaps being older helps (my perception was something was always going to get you so do stuff while you could). Also having diverse interests helps rather than having one thing that defines you.
I found that learning to adapt was key and you just need to look at ways of doing things differently. You need to plan your routes according to your ability and not fuss about what is no longer possible. If that means shorter, less demanding walks and using walking aids as necessary, then so be it. Keeping your muscles as strong as possible can only help prolong getting you out there.
Where you live sounds truly wonderful and hope you get to enjoy it for a good while yet.
*** Would an off road electric trike improve your options?
@milojka I am sorry to hear you do not access to services in your area, it really is a post code lottery sometimes
It might be worth contacting your GP though as even if Neuro physio is not available, standard physio could be? It was a standard physio in the first instance that noticed something was not at all right that set me on the path to a MS diagnosis.
Also, it might be totally different but I didn’t think I had foot drop as I didn’t feel I had the “traditional sign” of toe dragging all the time, but MS nurse and physios, followed by FES physio confirmed it was indeed that with a more atypical presentation but nether the less foot drop.
Hi @crd Being a late developer certainly helps, I know that, because I am one myself! I was 60 when is was diagnosed in March this year. I am very, very aware that I am so lucky to only have it now!! But this doesn’t mean I don’t struggle adapting to this changed body - which was still strong and fit only last year.
Hiking has become very important to me since I lost my husband and soulmate, 10 years ago. I then moved to this place, after which I have become much more outdoorsy - in a way I guess it was kind of a new identity for me. But I do have lots of other things I like doing, and also love being at home, with inside and outside hobbies and interests. And I love my work out in the community.
It was interesting to read your story, thanks for this. It shows, again, that we are all very different. I never had a clear relapse, although the neurologist says I do have RRMS. Solumedrol didn’t help with any of my symptoms. I should also say that I was diagnosed with lupus in my 20’s, which mainly has manifested as CNS lupus, but it hadn’t bothered me since more than a decade.
Hi again @Cavworld I think your suggestion to see a standard physio is really valuable. I can self refer, and I might give them a ring tomorrow, though I suspect a long waitinglist. I always thought: unless they come with me for a walk of 20-30 minutes they won’t see anything wrong with my legs - but that might not be right.
Already years ago, I’ve had instances of falling because I could’t lift my foot properly after a long walk. First this was after 3 hours, later much sooner - so definitely something similar to a dropfoot has been going on.
I really loved reading this - it is ofcourse what I am hoping for… and it’s what I would wish for anyone. It is certainly why I keep walking the shorter distances (while enjoying it!) and doing daily exercises at home too. And making and eating healthy food, and trying to rest and sleep well.
Could you give me an idea of how much the increase would have been - maybe in minutes, or yards, or a percentage? Yes, hiking poles - that’s a good one, might try this.
Once again@ alison100 that’s a good post and I for one am so glad you and others can still do this.
when I was first diagnosed 20yrs ago, they didn’t know what label to attach to me, so I was monitored for about 18mths, only then to be told I was SPMS and didn’t qualify for DMT treatment, so consequently with 3yrs my mobility had crashed, walking sticks, then manual wheelchair or scooter, in those 3yrs I tried so hard to keep things going, but MS won out, I still try and do what I can, so now I walk on a walking plate indoors, only manage 5/6mins at a time, but I figure it’s better than nothing. do I get P**SED off that I didn’t get a chance a DMT’s, you bet I do.
Keep on going, keep on enjoying the lovely outdoors, I do, just froma scooter now.
Take care and keep smiling,
Jean x
