Sensory symptoms

MS Plus acknowledges the traditional owners of the land this podcast has been recorded on, the Wurundjeri people of the Kulin Nation. We pay our respect to their elders past, present, and emerging.

Kim: Welcome to the Learn from Me podcast series. Many people with MS experience sensory symptoms that can have a huge impact on their lives. Today, Mark is joining us to share how he manages his sensory symptoms.

Mark: Hey, Kim. How are you?

Kim: Good, thanks, Mark. Can you describe the sensory symptoms that you've experienced and perhaps when they started?

Mark: Yes, definitely. I've experienced quite a few over the years. I made a list: I've got numbness, I've had tingling, I've had hot and cold sensitivity, I've experienced Lhermitte's, (I think is how it's pronounced, which is like an electric shock kind of going down your spine), I've experienced itchiness, I've experienced the MS hug as well. And when I was thinking about putting this list together, I reckon when I first started experiencing MS symptoms back 10 years ago is when these sensory symptoms were at their worst. In the first year I experienced MS hug and I experienced Lhermitte's and itchiness.

I remember I used to have like a scratch on my collarbone that just would not go away. I would itch it and scratch it and scratch it and it would not go away. And it drove me a little bit crazy at the time. But it seemed to fade, the hug and the Lhermitte's and the itchiness, after a few months, those definitely faded and I've not really experienced them much since that first year or two.

The numbness and tingling in my hands, that's where that feeling is most acute. That's sort of persistent. I've had that since day one and I reckon I'll have that for as long as I have MS. At least that's what I imagine anyway.

Kim: So it sounds like you've experienced quite a few sensory symptoms, Mark, that people can relate to there.

Of the symptoms that you've experienced, what would you say has been the most difficult to manage?

Mark: Well, I suppose the hot and cold sensitivity. I don't know if temperature sensitivity goes into this, just like being sensitive to a hot day, that has really caused me issues over the years, having to make adjustments to the type of activities I do, and just making sure that on a hot day I'm prepared, you know, I've got my cooling vests or enough liquids to keep me cool.

Other things that have been difficult is just having that numbness in my hands, which has led to having less ability. So, things like tying my shoelaces or clipping my nails, those became more difficult, or using pens and pencils, or even using utensils and cutlery when I'm trying to have a meal.

So, those have probably been the tougher ones to deal with, but I've been able to find solutions over the years to the various problems that I've encountered.

Kim: So, looking at those couple of examples, Mark, what sort of things do you do to manage the numbness and when you're trying to eat and things like that?

Mark: So, for trying to eat, I've found cutlery that have thicker handles, that fit in your hand a little bit better that make it so it's easier to grip the spoon or fork. I've also found forks that actually have, almost like a hook, so it kind of loops over the side of your hand, and that way you don't actually have to hold the fork the whole time. The fork just kind of hangs off of your hand, and it sort of slots in between your middle and ring finger, and I find it a lot easier to handle.

When it came to shoelaces, I actually replaced all of my shoelaces with these elastic bands, they're called ‘hickies’, where you take out the shoelaces and you put in these elastic bands and you can just slide the shoes on and off.

And then later, actually, more recently, I've completely abandoned, commercial or off the shelf shoes. I buy my shoes from a brand called Billy. And the reason I do is my feet swell a lot because I don't move my feet a lot. These shoes are a lot roomier and basically you can actually even take out the insoles so you have more space in the shoe. And they have a zipper on the top of the shoe. So instead of having to slide the shoe onto your foot, you can actually unzip the top of the shoe, your foot pops in, and then you can close the flap and zip the top of the shoe.

So it's a lot easier to put on if you have grip issues, or you can't really flex your ankle very well to slide your foot into your shoe. But yes, those are some of the things and for clipping my nails, there are electric nail clippers, and if you do a bit of Googling or, I saw a really cool occupational therapist on Tik Tok who designs assistive technology and she 3D prints things like an external grip for a spoon. Let's say she can 3D print those and you can slot them onto your everyday device and turn it into a more accessible utensil or device.

Kim: Fantastic. It sounds like Mark, you're looking at ways all the time to make things easier, to keep your independence and keep doing what you enjoy.

Mark: Yes, definitely. Definitely. That's so important to me. It's one of my goals. One of my most important goals is to maintain as much independence as I can. But in addition to that, because I do receive a lot of help from support workers and family to make sure that their job is made as easy and safe as well, from an sort of occupational health standpoint, like if someone's trying to put my shoes on for me, I don't want it to take them 10 minutes to put two shoes on if they can just unzip it and slide my foot on and, we're in and out in a minute.

It makes it easier for everybody. But yes, the other reason for finding solutions to the problems is that I haven't really had a lot of success finding medical treatments for some of my symptoms that would alleviate the symptoms, so you have to find ways to overcome the reality of, and find ways to do these tasks that medication might not help you with.

Kim: That's a really good tip, Mark. So it's really, I guess, researching what's available. You mentioned Google, and I know you also talked about your support workers, and it sounds like you get a lot of support through the NDIS. I wondered if you might chat about how that helps you in managing your sensory symptoms.

Mark: Yes, absolutely. I wouldn't be able to operate without the NDIS and without the help of my support workers. I got a lot of help early on from MS Plus to set up my initial NDIS plan and to go through the application process to get enrolled onto the NDIS. But since 2017 or 2018, that's when I started there, I've been using those services extensively for support, workers for professionals like exercise physiologists and occupational therapists and for assistive technology, like the utensils and special shoes and, more complex stuff like my walker or my wheelchair. Yes, I couldn't live without it really.

Kim: That's great, Mark. I know eating out sometimes can be a bit of a challenge. What tips do you have with that? Just say you're feeling some numbness in your hands. What do you do in that situation?

Mark: Yes, I do enjoy a night out whether it be drinking or eating, and, or both. I go prepared. I bring my fork and spoon and my straw in a bag with me. I usually carry around a little Ziploc bag with my utensils in it. And another thing for me is that I really struggle to drink soups with a spoon. I find that I find it really hard to scoop this spoonful of soup and bring it to my mouth, so, I use a straw usually to actually drink my soups. I always have my own things with me. Also, when I go to pubs or bars, I tend to bring a stubby holder with me because I am sensitive to holding cold things. If I hold a cold cup, I tend to have like a bit of a spasm or reflex to it.

And the same with very hot cups. So I sometimes will travel with a sort of travel cup coffee cup with me. Because if you go to people's houses, and they offer me tea or coffee, I find I can't really hold a mug with a handle or it just doesn't work for me with the way my grip is, so I bring my own cup to these sorts of social occasions and it seems to work for me. It seems like a lot of work, but if you have a backpack or a bag with you, and I always have one with me, these things tend to fit pretty well.

Kim: Sounds like preparation's key.

Mark: It definitely is. It definitely is. I, but again, it's turned into a routine for me. You do it a few times. It seems like it's extra work, but I always find I'm more comfortable and confident when I have my equipment and my devices with me. I've even started carrying around a bib or an apron with me so that I'm not worried about spilling food on me while I'm eating, because that was an issue for me. I felt like I couldn't have a meal without getting stuff on my clothes, and now that I have the bib or the apron, I almost never drop something on me. I'm not worried about it, and if I do, I don't really care. I just throw the apron in the wash and everything's fine. And I feel much more comfortable and confident.

Kim: That's great, Mark.

People have said that they can often pinpoint triggers for their sensory symptoms. Can you pinpoint some of the causes for your sensory symptoms?

Mark: Yes. Some of them just seem to show up out of nowhere. I think the numbness definitely gets worse when the temperature goes up.

So in the summertime when I'm outside, the numbness will get worse. My spasms or my, yes, my spasms, I guess I call them, when I touch something cold or hot, they're triggered by that. The Lhermitte’s is when I would look down, that would trigger that. I couldn't really say for the MS hug and itchiness and that sort of thing. It just kind of shows up out of nowhere, and just lingers. But for me, thankfully, these sensory symptoms haven't been debilitating to the point where they’ve really prevented me from living my life.

There's things like writing, I can't really write with a pen anymore. So instead of writing with a pen, I just tend to take notes on my phone. So there's always solutions, that's what I try to think, that's how I approach it. But I can't really say beyond temperature if there's things that really trigger these sensory symptoms for me.

Kim: I know a couple of people I spoke to mentioned stress, that stress could trigger some of their sensory symptoms. I wondered if that resonated with you at all.

Mark: Yes, it definitely does. It definitely does. I've had this experience watching sport, actually. I was watching the cricket a couple of weeks ago, and it was getting quite tense, and I could feel my legs tightening up and spasming, and I think it was quite clear that that stress brought that on. I've definitely felt that, particularly watching sport, but I've felt it in other situations too where, if I'm having a particularly frustrating conversation on the phone with, I don't know, with customer service or, with work or something like that, and that sort of anger can lead to my symptoms feeling worse, so, there’s definitely something there with stress and MS symptoms.

Kim: That's a really important point. I wonder if there's any tips you could share. Stress is something I think that we can't avoid in our lives. What do you do, Mark, when you are stressed, perhaps with someone in customer service or, having a difficult time, what do you do?

Mark: Well, I think part of it is just sort of embracing it, realising that, it's okay to be angry. Be angry. Be fully angry for a few minutes and then try to go back to your even keel, your steady state, whether it be just taking a few minutes to breathe and go back to normal. You have to learn to roll with the punches I think, with MS. And that's probably the best advice I can give, is just, learn acceptance, I guess.

Kim: Thanks, Mark. Some people say that when they're first diagnosed, you can be really sensitive to all different sensations and worry that everything's MS related. Is that something you can relate to, Mark?

Mark: Yes. When I was first diagnosed, I was definitely more sensitive. In that first six months to a year my symptoms were definitely heightened, and every new sensation you think might be caused by MS. It takes time for things to level out and then you gain that familiarity with your body and your particular sort of strand of MS.

It takes time. There's no secret to it. There's no quick fix because everyone deals with MS differently as well. So eventually you get used to it. Things tend to be a bit scarier for sure, in that initial phase of MS because you're so unfamiliar with it and there's no real handbook for it.

But, I think one thing that I missed when I was first diagnosed, or when I was first experiencing MS, was that I didn't know anyone who had MS, so it was very difficult to find those people to talk to who could actually relate to what you were going through. But nowadays in Australia we have so many resources that you can access through MS Plus where you can speak to people who have MS, and who are dealing with MS who can help you learn to deal with MS and help you just learn about MS and what it's like and make it easier to make that adjustment to this sort of new way of living.

Kim: That's a great plug for the MS Plus peer support program, Mark, and peers like yourself that people can chat to, I guess, feel reassured that they're not alone and also learn the tips and tricks that you're sharing today.

Mark: Yes, absolutely. I think people feel so much better. I facilitate a group that meets monthly and you can tell some months that people show up just feeling stressed and overwhelmed, and after having hour of talking to people who are going through it, and know some coping mechanisms, they feel lighter, they feel just a little bit more at ease and they feel like they have a plan. You can feel like it's hard to find solutions, but there's a whole group out there that have already done it, so you don't have to come up with all the solutions yourself.

Kim: Great. People have said that the hardest thing can often be that others can't see the sensory symptoms. Friends might say to you, “Hey, you look great” but inside you've got lots of different sensory symptoms going on. How do you manage that?

Mark: Yes, it's difficult. It's difficult. I think it's a good opportunity to educate a little bit on what MS and invisible disability is, if you want to. You don't have to give a symposium on MS every time someone asks you about MS, it's totally up to you, and also, I don't think we have to justify the way we feel to other people. It can be frustrating. But, if people want to learn about MS, they can learn from us, or they can find resources everywhere, on the internet, where they can learn about MS, but I feel like we can advocate or we can just choose to sort of turn the other cheek, I guess. It's just a matter of, it's a fact of life that people are going to be ignorant about subjects that they don't know anything about.

I think over time, I've learned to live with that. It is difficult because you don't always want to talk about MS, and I totally understand that, especially when I was first diagnosed in those first couple of years where my MS was much less visible than it is now. I didn't like to talk about it and it was upsetting to me, and I didn't want to share that feeling with other people. But nowadays I'm quite happy to share and discuss, and I'm more familiar with the disability as well, with MS, with the condition, so I feel more comfortable talking about it and educating about it.

So that's how I look at it. It's just an opportunity to get the story of people with MS out into a wider audience whenever I can.

Kim: That's great, Mark. And I love the piece about you don't have to tell everyone and perhaps it's a choice. And does this person need to know, and I like the fact that you mentioned you can educate others and it might be good educating, say your support worker, as to why you're feeling a certain way, as to why the numbness is causing this particular problem, and that it's better that it's a warmer room than a colder room, or whatever you might need. That education, I think, is so important in some situations.

Mark: Yes, it definitely is, especially because it's so different for all of us though, how we experience MS. So yes, you have to tell people, people are not going to be able to read your mind.

And even when it comes to work as well, I think that's one of the more important spaces where MS being invisible can work really against us. Sometimes being comfortable with telling people how you're feeling is definitely an important part of advocating for yourself and making sure that you're able to have as much success in those different sorts of situations, I guess.

Kim: What advice would you give to someone newly diagnosed who's experiencing sensory symptoms?

Mark: I would recommend speaking to your MS nurse for one, if you can, to see if there's any treatment that they recommend, any medical treatment.

Secondly, I would recommend speaking to other people with MS who are going through these problems to see what solutions they've come up with because, a lot of the times with the sensory conditions, at least in my experience, I haven't found pharmaceutical solutions to the problem. So you have to find ways of getting around it by doing your activity differently, or doing the task differently, finding a new device that can make the task more easy for you.

So yes, it's just speaking to people, speaking to your OT, (occupational therapist), if you have one, or if you don't have one, just scheduling maybe an hour or two hours with an occupational therapist where they can educate you on what's available. That would be my advice.

Kim: Fantastic. Thanks so much, Mark. It sounds like there's lots of things you can do to help manage sensory symptoms. You've mentioned a whole range of different things, including linking into NDIS, peer support, reaching out to the MS Plus nurse.

Fantastic advice, Mark.

For those listening, if you'd like to talk to someone like Mark to get information and support for your own situation, please contact MS Plus Connect on 1800 042 138. There are peer support volunteers like Mark who are more than happy to offer you support. Don't be a stranger.