seeing MS

spacticity

I’ve recently found Seeing MS, a site that tries to help explain some of the symptoms of Multiple Sclerosis through photography and a short video of each symptom. I think they’ve done as good a job as possible at showing others what the symptoms feel like to those of us that are experiencing them.

For the past few months, I have been off work while I recover from an MS exacerbation. For the past few weeks, I have been dealing with another increase and worsening of the symptoms. The cane that I have been using for the past few months has been replaced by a walker. It’s not very sexy, but it is much safer and has helped me to be able to get out of the house occasionally without using a wheelchair. I have received some steroid treatment and hope that it will help turn things around soon, along with the exercises that visiting occupational therapist and physiotherapist have been teaching me. In the meantime, I spend a lot of time in doctor’s offices trying to explain what is going on in my body. I have often wished that it was possible to project the way it feels for a few moments, to avoid trying to explain it, but I also wouldn’t necessarily wish the feelings on anyone else.

Right now, my main symptom is spasticity. The photo above is one photographer’s interpretation of that symptom. It does a great job of showing the feeling I’ve had this winter of trying to get outside with the slippery ground while using a cane. The other photos on the website are also good representations of the other main symptoms of MS. I’d recommend having a look if you know anyone affected by the disease.

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51 thoughts on “seeing MS

  1. Oh Heidi, you have had such a bad run with it lately, especially with all you have shared that is going on in your busy life. I hope the symptoms ease for you as the weather warms up. It is such a fickle disease, you never know what it is going to do next.
    I feel so blessed that at this stage it doesn’t affect my ability to get on and do things, so long as I listen to my body and stop when I need to. But the ‘what if…’ is always in the back of my mind.
    Thanks so much for the link, it is always reassuring to know that others understand. I’ll share it with my support group.
    Take care of yourself.
    God bless
    Sarah : o )

    • I didn’t know that this is something that affects you too. I recommend keeping on normally and ignoring the what ifs. My normal lasted a long time, only this year becoming an issue. I’m also gearing up to try a third disease modifying drug (the first couple had side effects that didn’t work for me) in hopes of getting back to normal sooner.

      • Yeah – I’ve had it 8 years, but it doesn’t normally get in the way too much – except the fatigue so I have to be really careful not to over do things. The up side is we wouldn’t have moved to the country other wise and now I have a great career gardening, writing and speaking that fits in around it.
        I hope your new treatment works well and you are back on your feet in time to get the most out of summer.
        Cheers Sarah : o )

  2. Sorry that you are still having difficulties and really hope the steroids begin to help you improve… There is a blogger that I follow that primarily writes on M.S. but positive things as well as the challenges…. Her name is Catherine… and she’s very nice… I’m going to give you a link in case you’re interested… take care Heidi … Diane

    http://soihavemsnowwhat.wordpress.com/about/

  3. It must be so frustrating to be held captive at home… The walker sounds a good way to go if it gives you safer mobility.

    It is good that you shared this information about MS – seeing how it is for those outside the pain and restrictions is so important. Hope the steroids work.

  4. Explaining symptoms to some one else is really hard – when I had my thyroid removed I went into a spastic state and it was extremely frightening – my legs, arms and hands went rigid and I just had to wait until it passed which was only about 5 minutes until they got the oxygen but long enough. I watched the videos and they are very interesting to see what you feel. My mother in law has Parkinsons Disease and there is a brain – co-ordination deficiency with that and I often used to ask her how she felt inside before the dementia set in. I am sorry that you have had a long stint of feeling unwell and I hope you see a big improvement with the steroids and are able to get about more easily. Take care.

    • That must have been extremely frightening. It makes us grateful for feeling well when we do.

      • I wouldn’t want it to happen again although it could but I would at least know that if I just wait my muscles will soften again eventually. Is there anything that makes your MS worse or is it literally out of the blue when you suffer a set back? It must be so frustrating.

        • It seems to be out of the blue, but I do notice that temperature changes make the spasticity worse. Hopefully some warm dry weather will make things better, but even that is new for me. The weather never really had an effect before, except maybe for humidity making things a bit unpleasant.

  5. Thanks for sharing this, Heidi. I’m going to pass it along to my sister-in-law, whose father deals with MS.

  6. Catherine says:

    Thank you for visiting my blog! Brought me right back to yours :) I’m happy that I did! Hope your steroid treatment moves things along with your relapse! Glad you have good exercise program to keep strong! You mentioned spasticity, can you tell me if your doctor is treating to help you? Not trying to pry here, just sharing what works for me if it’s different. :) Enjoy your evening!

    • I do take Baclofen for the spasticity, which helps somewhat, and something for pain as well as just having finished some pre-testing for a relatively new DMD that I hope to start soon. And physio exercises. I’m interested in hearing about anything you do that might be different.

      • Catherine says:

        Thank you for responding Heidi! Sounds like you’re doing good things. Do you also stretch? I stretch typically 3-4 times per day, depending on how it’s going in additional to Baclofen. What areas of bothersome? Which new DMD are you considering? Lots of good options today! :)

        • I do stretch, but often skip it when the pain is worse. Right now my legs and back and hands are most affected. The OT has also given me strengthening exercises for my hands. And the DMD that I am supposed to start is Aubagio. I’ve already tried Tecfidera (made me nauseous) and Copaxone (couldn’t tolerate the daily injections).

          • Catherine says:

            Thank you for your info Heidi. Has anyone shared that the pain may decrease once strengthened? Has neuro ever mentioned Botox or Phenol injections to reduce, eliminate spasticity? Understand your concerns with DMD. With the tecfidera, did they slowly introduce amount – this often will reduce side effects. Just an fyi…in the states, Copaxone is converting to 3x a week injections. I take Rebif. It works for me. I admire you’re being your own advocate while continuing to find a good fit for you! :)

            • I did start the Tecfidera at a low dose – and never made it to the increase, it made me so nauseous. It also affected my blood pressure, so the Dr. said to stop taking it. I have a bit of a hatred of needles too – even 3x/week seems a bit too much for me. I did try it, but found I worried about the next injection continuously.

              I have heard of Botox, not the other – but they don’t seem to be therapies that are used up here very often. Definitely not in the clinic that I attend. Glad to hear that Rebif works for you – I hope to have success with the new medication too.

            • Catherine says:

              Sure sounds like you have a great Medical Team Heidi!
              I completely understand the fear of needles. That’s very common, isn’t it? Good news, the orals now available to try and one is bound to be a good fit. I’m excited for you to begin!

              Botox is indicated primarily for upper extremities but some physicians will use for lower also, depending on your spasticity. Mine was bad, hence, Phenol was preferred. I never heard of it either but it worked for me.

              I’ve been taking Rebif for 12 years. My 3rd DMD. Based on MRIs all these years, no new lesion load and a couple of small flares. Blessings right there. Currently, I’m dealing with damage occurring from early on lesions of the spine. Not always easy but I must process, adapt and move forward. One day at a time for us all as we strive to live our life the very best we can. You’re doing just that Heidi! After all, you have hockey games to get to!!! Enjoy your weekend!

  7. naimavanswol says:

    Wow. This is awesome and inspiring. Hope you’re on the mend soon.

  8. jmgoyder says:

    I am so sorry you are having such a terrible time. My thoughts are with you.

  9. escharae says:

    I have been submitting photos to the user gallery of the website and I did one on spasticity. To me spasticity feels like naked tree branches trying to reach for the sky but beeing frozen in a rigid position. You can see the picture here http://escharae.wordpress.com/2014/03/22/seeing-ms-my-first-take/. I hope you start feeling better soon.

  10. Thanks for posting the link, Heidi. No one close to me has MS but I have friends with chronic fatigue and fibromyalgia. I have learned a lot from them about paying attention to your body and advocating for your health care. I hope you are back to sitting in the bleachers soon!

    • Thanks! I still managed to sit in the bleachers throughout the month, it just took a little more effort and help than before. CFS and fibromyalgia are also very similar to MS in that they are mysterious and invisible to most.

  11. Thanks for the link and the discussion you have started here. My cousin has MS and this helps me understand his problems more. Here’s wishing you improvement soon.

  12. my heart goes out to you – you are such a vibrant human being and to be slowed down by this must be just awful–but here you are, helping us understand what you are going through–wishes and hugs for you

  13. Hi Heidi

    Sometimes when someone I feel close too is going through a rough time I just have no words, or at least no words that are sufficient to show how much I care. It is odd to feel such a closeness to you but I feel we have become friends through our blogs–and it is a testament to the fact that some blog friends are truly friends. I wish I lived closer so that I could visit you and bring over some chili (my only signature dish) — so until that is possible know that I am with you–and if ever I am silent it is only because I do not have the words. Wishing you a spring of recovery – love Lou

    • Thanks LouAnn – that comment made me feel great. It has been wonderful to meet people like you and have a conversation this way and through emails. I’m pretty sure this will pass shortly and I’ll be back in the garden by the time the snow leaves.

  14. Have any of your drs tried food modification? Just curious.

  15. Everyone in the comments above have already expressed how I feel. Please know you are on my mind. Thank you for introducing me to the unusual hard to explain symptoms. I have learned alot

  16. Really sorry that you are having a bad time – I agree with Lou about feeling close to and caring about those whom we have only met through blogging. I am so impressed with how you have kept up with your blogging and visiting – which I have found hard this winter.

    I found that 30 second video very illuminating and powerful. Thank you – and I wish you all the best in the hope that your new medication and the coming Spring will help. :)

  17. Lyn says:

    Hi Heidi. It’s wonderful to see how this Seeing MS awareness campaign has travelled around the world and touched many people. I was diagnosed nearly 4 years ago and always found it very difficult to explain what my symptoms felt like. My husband is a photographer and during one of my daily afternoon rests I mentioned to him that it would be great if others could see how I felt? Our daughter is in advertising and we included her in our discussion. The project was born from this and we are thrilled that it is having such a wonderful response. Some of our neuro’s and doctors are showing it to newly diagnosed people. That’s such a comfort to me. I was devastated when given my diagnoses! I didn’t have much of an idea what it was or anyone I knew that had it!! Anyway, enough from me, stay well and fight the good fight. The only thing we can be sure of is that we won’t give into it.

  18. chef mimi says:

    A great post, but I’m so sorry. I had no idea. For what it’s worth, it’s one of our favorite charities.

  19. so sorry to hear you are having a rough time. I know how frustrating and all consuming it feels to be dealing with MS issues all the time. Just an FYI, my switch to Tysabri has been nothing short of miraculous. So, perhaps, that might be an option at some time?

  20. Lois Field says:

    Heidi, some how I missed that you posted this month. I’m sorry things are getting worse for you and I know exactly what you mean about wishing you could project what you are going through. Even for my symptoms I never could have imagined how my body would be responding at this point so if I couldn’t imagine it how can I explain it to others.

    I hope your new medication starts working soon and you can get into the garden. I know what this winter was like for me being stuck inside so I can only imagine how it was for you.

  21. Christine says:

    Thinking of you and hoping your situation improves soon. Thanks for sharing the pictures, they were so helpful to understand MS a little better. Hugs xx

  22. Lynne Ayers says:

    Thank you for the link Heidi. The photo of numbness actually made me cry as this is the one that my daughter speaks of the most. I am sad to hear of your difficulties these past months and hope you stabilize soon.

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