S8E32: Webinar Highlights – Symptoms with Vickie Hadge

Vickie Hadge (00:00)

Sensory symptoms. This one. numbness and tingling and that burning sensation or the nerve pain, the neuropathic pain. I get this in my left foot, especially when I’m exercising. I know if I’m going hard, I’m going to get some pain and tingling in my foot. So being aware of the triggers is really important. for me, temperature is a key.

 

Gina Beach (01:05)

If you’ve been to one of these before, you might know that I’m Gina Beach. I’m your host for this evening.

If we haven’t met yet, I am an OMSer. I live with Relapsing MS. I am joining you today from the UK in Bristol. And in a moment, I am going to be welcoming the wonderful Vicky Hadge, who is an overcoming MS program facilitator. She is an OMSer, she lives the program, she’s super knowledgeable, the title is MS Symptoms Made Manageable: Practical Strategies for Daily Life.

Vicki, come on up, come on to the virtual stage. So nice to have you back. Lovely to see you. How are you doing?

 

Vickie Hadge (01:49)

I’m doing great, Gina. Thank you so much. And thank you for the lovely introduction. And it’s good to see you again, my friend.

 

Gina Beach (01:56)

Same likewise. I’m gonna turn it over to you for our symptom management webinar. Take it away, Vicky.

 

Vickie Hadge (02:03)

Thanks, Gina. Hello, everybody. Thank you so much for joining us today. I’m thrilled that you’ve joined us today. We’re going to talk all about our symptoms and some practical strategies and how we can manage them. A little background about me. I have been living with MS for over 20 years and I manage a lot of my symptoms with diet and lifestyle changes, but that doesn’t mean that I don’t have symptoms. I do.

And there are practical things that we can do every day to help make our symptoms better.

How does MS affect us and why do we have all these symptoms? MS is a neurological condition. I’m just going to review a little bit for those who might be new. The myelin sheath, which is the coating on our nerves, gets attacked by our own immune system. And this causes inflammation and it also affects our nerves. So our central nervous system goes everywhere in our bodies.

And any nerve can be affected. It affects our brain and our spine and our optic nerves. So if those signals get interrupted by this inflammation or the scarring after the inflammation, we can have symptoms anywhere. And a lot of things can affect our symptoms day to day. So when the myelin sheath gets damaged, our signals can’t get through as they used to.

And a lot of times people will refer to this as thinking of it as an electrical cord or a charging cord for our phones. We have the wire on the inside, which is our nerves, and then the coating on the outside is like our myelin. And if we have a crack in the plastic of the coating that charges our phone, our charging cords might not work as well. So that’s how it can affect our central nervous system.

So we can have a lot of variation day to day, and there’s a lot that can affect our symptoms. And we’re going to go over a few of these today. One of them is the heat. And we all know the heat can really affect us. And I know that when I get overheated, my symptoms really do flare, especially my fatigue.

So heat can definitely affect us. If our internal temperature goes up less than half a degree, we can have increased symptoms. And this can happen when we’re exercising as well. Our core body temperature goes up, and then we can start to feel those symptoms increase. And stress is another big one for me. When I get stressed, my cortisol levels go up. And when we have long-term cortisol, elevated cortisol, our symptoms can definitely flare. Our bodies aren’t designed to have cortisol in them all the time. Cortisol is part of that fight or flight hormone response that our bodies get, but it’s also part of our natural daily rhythms.

And if we stay in an elevated state all the time, this can definitely make our symptoms flare. Our moods. I know if I get angry or sad, or even if I get excited or really happy about things, I can notice that my symptoms are going to be a little very variable as well. So mood can definitely affect our symptoms and sleep.

When we sleep at night, our brains clean house. We have spinal fluid that will go through our brains and clean out the plaques. And this can really help us with our symptoms. And also when we’re sleeping at night, we repair from any damage that was done during the day. So we’re not getting good sleep. This can affect how our nerves fire and how we feel the next day, especially with that fatigue.

And speaking of fatigue, if we’re fatigued, it can affect our symptoms as well. And this is like one of those compounding things that happens. If I’m fatigued, I’m not as likely to do my regular daily activities. So I’m not doing the physical activities that I usually do, and I’m not doing the mental activities that I usually do. And I may not be cooking the healthy food that I usually do. So fatigue can definitely contribute to our symptoms and how they can vary day to day. And comorbidities, that’s kind of a big word. Comorbidities are other conditions that we have. It could be diabetes or heart conditions, it could be another autoimmune disease. So if we have comorbid conditions, this may affect our symptoms as well. And they have their own symptoms. Sometimes it’s a little hard to distinguish which is which.

So there’s a whole lot that can go into our symptoms day to day. So fatigue, it is one of the most common MS symptoms. And it’s also one of the most common symptoms that leads us to leave the workforce. Many times when we’re first diagnosed, we think, no, that wheelchair disease. And we’re going to become disabled and we’re not going to be able to work anymore.

But more than likely fatigue is going to lead us to not work anymore more than our physical disabilities. So fatigue is one of our more troubling symptoms. But there are tips and strategies that we can use. Pacing ourselves. Has anyone heard of the spoon theory where you wake up in the morning and you have a handful of spoons that are representative of the amount of energy that we have to do all our tasks during the day? And just getting up and getting showered can take a spoon. And getting breakfast ready and maybe getting our kids ready for school or getting ready for work can take another spoon. And by the end of lunchtime, we’re all out of spoons and we have no spoons left for the rest of the day. So if we can pace ourselves throughout the day and really pay attention to how many spoons is it going to take for me to do that activity.

This can help us manage our fatigue throughout the day. Next is energy conservation. This one is a little bit more tricky, but there are little things that we can do every day to conserve our energy. One of my favorite things to do to conserve energy is to sit down. I can sit down while I’m doing my makeup. I can sit down while I’m drying my hair. I can sit down while I’m preparing food. Just standing can take a lot of our energy, especially if our MS is affecting our legs and our ability to balance and the energy that we need to put towards staying upright. So sitting is one of my favorite ways to conserve energy throughout the day. The next one is to take a little rest. I think in a lot of Latin countries, that afternoon siesta is a great idea. You know, schedule time for that 20-minute relaxation in the middle of the afternoon.

This can really help us conserve our energy and help with the fatigue. And physical activity, I know it sounds counterintuitive to get active, to not be fatigued, but there are a lot of studies out there showing that physical activity and exercise are really good to help us with symptom management. So moving our bodies daily, purposefully moving our bodies daily, whether it’s a walk or strength training or going to the gym or stretching or yoga.

These can all help with fatigue as well. And good sleep. We talked a little bit about sleep on that first slide. And sleep is so key to managing fatigue. And there’s a lot of hygiene tips that can help with that. And the first one is the first thing that we do in the morning. I know it sounds a little odd, but the first thing that we do in the morning can really help us sleep at night. And that’s to get natural daylight into our eyes. Our bodies naturally spike cortisol first thing in the morning helps us get ready for our day and take on all the activities. And getting outside and getting natural daylight into our eyes will help start that rhythm first thing in the morning. And at the end of the day, our cortisol levels will drop and it will help us to sleep better at night. Another thing that we can do for our sleep hygiene is to train our bodies that in the evening we are getting ready to sleep. So dimming the lights after dinner, this is a visual signal to our bodies. it’s almost rest time. Not eating food a couple of hours, maybe two to four hours before bed, will help us to sleep better as well. Our guts aren’t churning and trying to digest a big meal as we’re trying to go to sleep. making our rooms as dark as possible. Try this activity tonight when you go to bed: Turn off all the lights, close your eyes for a few minutes so your eyes can acclimate and then open your eyes and look around the room. You might be surprised at how much light is in your room. Look for the LEDs on clocks and electronics and any devices that might be in the room. If you can cover those LEDs at night and get room darkening shades, this will help you to sleep better as well. And if you can lower the temperature at night or have a fan going. Getting a few degrees colder at night will help us to sleep. And the next tip is not a popular one. No screens in the bedroom. I know, I know, it’s hard. But if we have our phones and our TVs in our bedroom, the blue light from the devices or our tablets, the blue light from the our devices signals our brains to be awake. And also the activity on the screens and the noise and the stimulation of watching TV also signals our brains to be awake. So if at all possible, make sure there’s no screens in the bedroom. Keep those outside of the bedroom. And again, this is another signal to the body. I’m in the bedroom. The bedroom is for sleep and your bodies will sleep better. Mindfulness and stress reduction. I love this one. I have been practicing mindfulness for years. After my first relapse in 2006 I started doing yoga and at my yoga studio, there was a mindfulness practice at lunchtime. And it was just 30 minutes. And I was amazed how wonderful I felt after and how rested. I didn’t sleep, but I was still and I was focused on the present moment and how much that helped me with my fatigue. I have two small practices that I do every day in the morning before I get out of bed. I take five mindful breaths. And then again in the evening, when I get back into bed, I take five mindful breaths. And mindful breathing is just inhaling and exhaling and paying attention to the breath. It doesn’t mean stopping all your thoughts. That’s not what mindfulness is, but focusing on your breath can help you be very mindful of how you’re feeling and how your body’s feeling. And it does help to relax us as well. we talked about keeping cool, Some things that can help keep us cool, a neck wrap. you can use a tea towel, just get it nice and wet, bring it out, put it around your neck. This will help. Putting it on your wrist anywhere where you take your pulse, this can help cool you down as well.

Fans, of course, fans, if you have access to air conditioning, that can help a lot too. I like to sip ice cold water, especially if I’m going to the gym. I have ice cold water that I sip frequently at the gym to keep my core temperature down. And this will help to manage the symptoms as well. Journaling. Yeah, journaling is a really interesting way to help us with fatigue because if we journal when we’re feeling fatigue, and then we go back and look at it. We can make associations of what’s causing our fatigue. Yeah, we could say, I had such a great day today. I went to a party, it was outside of the park, but I’m feeling really fatigued now. Or I just recently attended the Overcoming MS retreat recently, and I had a great time and it was so exciting and so much fun. And then I got home and I had increased fatigue, and it was just a lot of activity. A lot of mental activity, a lot of emotional activity. And then I crashed afterwards. I had some fatigue that in the days following. So keeping a journal or an app to figure out what might be causing our fatigue can be very helpful. And of course, diet. many of these symptoms, we these seven pillars of the overcoming MS program can help with. And diet is a really big one. Eating a primarily plant-based diet can help keep our guts very healthy. And this can help alleviate our fatigue as well. Mobility and balance. This is one of mine. My left leg is affected by my MS. And so it can be weakness or spasticity or stiffness and all kinds of coordination problems. When I get tired or I’ve overdone it, I catch my toe all the time on my left foot and trip and stumble.

But there are things that we can do to help with this. Stretching is a great one. It seems so simple. But if we regularly stretch every day or try to have a regular stretching routine, this is going to help pull those muscles, release some of that spasticity and that stiffness. I find if I miss a few days of stretching, I can get this tightness in my left leg. I like to say I get the MS hug around my thigh. It gets really tight. It feels like my skin is too small for my leg. But if I’m stretching regularly, that can really help me. Strengthening work. When we are using our muscles and we’re keeping them nice and strong, this is going to keep us more stable. Like I said, they said exercise is the second most effective non-pharmacological treatment for our symptoms, right behind our medications. So keeping strong can really help us with our balance as well. And balance work. One of the things that I saw recently, a doctor was talking about sneakers and how there’s a lot of new sneakers out there that have really thick soles and they’re very cushion-y and they’re marketed that they make walking easier. But for people with MS, those thick soles can interfere with our balance. And what happens is we’re not feeling the ground. And if we can’t feel the ground, we are not able to keep our balance. And if we’re not able to feel the ground, the smaller muscles that are in control of the balance work around our knees and our ankles, they’re not getting worked out as much. So they continue to get weaker. So balance work is really important. And working with a physical therapist. I work with a physical therapist, I have for years. She’s amazing. She can watch, watch me walk. She can analyze it and she can suggest different exercises to help me. One of the ones that I didn’t really know that I needed to work on were my hip flexors. I always thought it was down in my foot and my ankle, but it turns out my hip flexors needed a little bit of work. So working with a physical therapist, especially one that specializes in MS, can be very helpful.

And assistive tools. How many of you, when you were first diagnosed, thought, no, a wheelchair? Over the years, I have had a shift in my thinking about assistive tools. I think it might have been George Jelinick in one of the overcoming MS books, who talked about a wheelchair being a mobility device, an assistive device. And many times people refer to it as being confined to a wheelchair. And we aren’t confined to a wheelchair. We’re liberated by it. Without it, we would be confined to our homes and confined to our beds. So assistive tools are amazing. I use hiking sticks when I go off trail in the hiking because I can’t always feel what I’m stepping on. And those hiking sticks give me that little extra confidence that I can hike on the trails.

Sensory symptoms. this one. numbness and tingling and that burning sensation or the nerve pain, the neuropathic pain. I get this in my left foot, especially when I’m exercising. I know if I’m going hard, I’m going to get some pain and tingling in my foot. So being aware of the triggers is really important. for me, temperature is a key.

Cause of my numbness and tingling in my foot. And it used to scare me away from exercising, but I now know what causes it. So I know it’s going to go away. So being aware of it is part of how I deal with my sensory symptoms. And again, I sip that ice cold water to keep my core temperature low when I’m at the gym. Relaxation and grounding. I like this one.

Talking about grounding, getting your feet on the ground and feeling where you are is really important. And the relaxation that mindfulness again can help us when we’re having pain. If we can be mindful, it can help us cope with that pain much, much better with meditation and even mindfulness breathing. Dr. Gretchen, who is a physical therapist, Dr. Gretchen Hawley and also a friend of overcoming MS, you can search for her on our website and find lots of resources from her. And she has a tip that she uses with her patients for sensory, and she’ll put items in a bucket for people to put their feet in or their hands in wherever they’re having symptoms. And it can be beans or uncooked rice or even cotton balls. And putting our feet or hands in them and getting used to the sensations can help us decrease that numbness and that tingling and that pain if we do it over and over again. I actually have a device under my desk for my feet. I’m really short so my feet don’t reach the ground. And this device just lifts my feet up a little bit, but it rocks back and forth and it has little balls on it. And I can rub my foot on those little balls and that helps a lot. And medications, medications can be very effective with some of our pain and our extremity problems. So don’t discount medications. Medications is a part of the Overcoming MS pillars and we encourage you to work with your doctors on that.

Vision changes. This one’s a tough one. Optic neuritis. The optic nerve is one of the nerves that can be affected by our MS and it can cause blurred vision, double vision, and we can even lose some of our sight. So one of the things that we can do is rest our eyes. Especially in modern times, we’re on screens all the time. We’re working on screens, we have tablets, we have phones, we are looking at these bright screens all the time. And if we can rest our eyes occasionally, we can help with some of these vision challenges. Have you heard of the 20 20 20 rule? If you’re on a screen for 20 minutes, look away at something that’s 20 feet or more away for a minimum of 20 seconds. This will give our eyes a chance to rest and rest and relax in between all the work that we’re doing. And we can also change the brightness of our screens. Sometimes you could have settings on our phones where we can change the brightness and even change the color so it’s a little bit easier on our eyes. And also not making our eyes work so hard. Using the accessibility tools on our computers and our tablets and our phones make the text bigger, make it easier to see, more contrast. So that can be helpful as well. And again, keeping track of those changes, using a log or some kind of an app to track when we’re having vision disturbances.

This can help us when we’re working with our doctors. We can go in and say, you know, hey, when I was outside for a long period of time, I noticed I was starting to see some vision changes. And they might be able to tell you to use sunglasses more or hats more. So if we can figure out what’s causing our symptoms, we could definitely work with our doctors on those symptoms.

Bladder and bowel changes. Many, many people with MS have urgency or frequency with bladders and bowels, and it’s one that doesn’t get talked about enough. We have many things that we can do to help with these. Diet is one of our pillars, and having a healthy gut will help with the bladder and the bowel, especially the bowel. many people do not get enough fiber in their diet.

I read that 96% of the people in the UK do not have enough fiber in their diet. And in the United States, it’s 90 to 95%. So most of us could use more fiber in our diet. And the fiber does two things. It feeds our guts to help us have a healthy gut microbiome and keep the leaky gut from happening, but it also helps move things along so it can help with the constipation. So dietary considerations are really important. And hydration.

I know it sounds counterintuitive to drink more to pee less, but it’s true. If we are restricting fluids, our urine is going to be more concentrated. And when our urine is more concentrated, our bladders get more irritated and they want to get rid of it. So we’re peeing more often. So staying hydrated can help with that. And it can also help lower the risk for urinary tract infections. So definitely stay hydrated. Exercise. This is another big one I keep coming back to. When we’re sedentary, our pelvic floor muscles are sedentary too. So if we’re sitting a lot, our pelvic floors aren’t getting the exercise that we need to keep them healthy and strong. So exercises are really important. And seeking the advice of a physical therapist, I’m gonna go back to Dr. Gretchen Hawley, because I love her. And she gave a tip recently that really helped me. She said, when you’re sitting to pee or you’re peeing, pretend you’re blowing through a straw like this. And it will help empty your bladder. And I thought to myself, no way, this is not going to work. And sure enough, it works. It helps me to more completely empty my bladder so I don’t have to pee as often.

Cognitive issues. This is a tough one. I have some cognitive problems, and I often go to my doctor and say, Is it MS? Is it menopause or is it long COVID? And she says, Yes. So we’re not really sure, but it can happen for us. We can forget words, we can have memory issues, we may take some more time to process things and figure things out or remember words. So having organizational tools. I rely on my phone so much. I have everything on my calendar in my phone to help me remember what needs to be done. And I’ve been known to use post-it notes. I’ll leave them around the house to remind me or I’ll put it on the door so I don’t forget something when I’m leaving the house. So use those tools. There’s lots of apps out there that can help us as well to remind us when to take our medications and when our doctor’s appointments are I use one that helps me remember which day of the week to do my medication. So that’s really helpful. And cognitive training exercises. I do a crossword puzzle every morning while I’m drinking my coffee. And I also do other games like the wordle game and the word association game. So those can really help with our symptoms of cognitive issues. And, you know, work with your doctors. If you’re having cognitive issues, they can help you as well.

Moods and emotions. Having depression and anxiety is a symptom of MS. We’re not depressed because we have MS and we don’t have anxiety because we have MS. It is a clinical symptom of MS. Depending on where our brain is affected, it can be a symptom of our MS of our MS. But there are things that we can do that can help with that.

 

Coming back to mindfulness, these are such great tools. I took an eight-week mindfulness-based stress reduction class based on the teachings of John Cabot Zinn, MBSR. If you want to search for MBSR courses near you, I highly recommend it. They give a lot of tools to help us manage our stress and also be mindful. And mindful simply means being in the moment.

Being where you are. A lot of times we use breath as a tool in mindfulness because it’s the only thing we have with us at every moment of our lives. So mindfulness can be very helpful. Having peer support and shared experiences. I talked about going on the retreat recently. Definitely look into the website, look for upcoming live events. There’s going to be a Live Well Live coming up, and also there’ll be another retreat next year, I believe.

If you can attend these events, they are amazing. Being in a room full of people who get it, who understand, who you don’t have to explain what your moods are or why you’re fatigued, and they totally understand how our symptoms can affect every one of us every day, and we all experience it differently. Having that shared experience can really help us to cope.

With the stress of living with MS and psychological support. I started seeing a therapist shortly after my diagnosis, and I still see her today. I don’t see her as much, but she was really key in helping me sort out the emotions of living with this disease. When we’re diagnosed, we’re often told it’s a progressive, degenerative, incurable disease. And that got stuck in my head.

And I thought to myself, I’m never ever going to get better. I’m only ever going to get worse. And it was really daunting. And I was grieving a lot. And having someone to talk to outside of my friends, outside of my family, an objective person who’s trained in dealing with these kinds of things was incredibly helpful. We go to the doctors to take care of our physical health all the time.

Seeing a therapist to help with our psychological health can be just as important.

All right. Thank you everybody. That is the end of my symptom management. I hope that you enjoyed it and we are going to talk about questions and answers now. Welcome back, Gina.

 

Gina Beach (30:25)

Thanks, Vickie. That was so great. I feel like you covered a really broad array of topics and things that a lot of us can really relate to. So I think more than anything for me, I’m like, at least I’m in good company. And I know that all of the things I’m doing holistically, in addition to medication, they do help. There are absolutely things we can do to ease our symptoms, to make life better. A little bit more enjoyable, a little bit easier.

 

Overcoming MS (30:57)

Are you ready to connect, learn, and feel inspired? Register your interest in our latest events and courses by visiting overcomingms.org slash events to find out more.

 

Gina Beach (31:11)

So should we dive into some of our pre submitted questions?

 

Vickie Hadge (31:17)

Absolutely.

 

Gina Beach (31:18)

Great. So here’s our first one. It says, how do you deal with exhaustion and fatigue, especially when you’re working, if you’re in employment, if you can’t take sick days, if you have limited vacation allowance? I know you might empathize being in the US where there are fewer vacation opportunities perhaps than some of us on this side of the pond.

 

Vickie Hadge (31:43)

Excellent question. You know, a lot of times we feel like, I’ve got to give my all at work. And then we have nothing left. We’ve given everything we can to work. I really encourage everybody to work with your employers. Let them know what you’re experiencing and ask them to make accommodations for you. You might be pleasantly surprised. They might give you an extra break during the day, or an extra couple breaks during the day where you can go out to your car, or you have a private place where you can sit down or lay down at work. Most employers really value their employees and they want to help them. So definitely work with your employers on that. And there are so many things that we can do to manage our fatigue. MS is a multifactorial disease. There’s so many things that go into MS.

 

Living well with it is a multifactorial exercise as well. So if you look at the pillars of the OMS program, all of them are evidence-based. And if we work a little bit on all the pillars, it’s going to help our fatigue a lot.

 

Gina Beach (32:50)

Yeah, absolutely. And you know, we have had some great resources on employment and MS. Yasmin Neves, who is another one of the facilitators, has done a podcast with us. There’s an employment study that is going on currently. Hopefully we’ll have some results from that soon to share, but I cannot iterate enough please talk to your HR department about making some reasonable adjustments so that you aren’t totally fatigued by the time you’re done with your work day. So Vickie, are there ways in which we might unintentionally worsen our cognition and brain fog despite our best efforts?

 

Vickie Hadge (33:40)

Yep. So like I said, multifactorial and so is living well with it. You know, if we are not sleeping, if we’re eating garbage food, if we are not keeping to a good schedule, if we are stressed all the time, all of these can contribute to it. So being mindful of how we’re living our days moment by moment and bit by bit.

Unintentionally, yeah, we can cause ourselves harm. Keeping a log of when our symptoms are flaring. If we’re having a really tough day with cognition, think, all right, I need to write this down and I need to think about what happened prior to this. I went away last week, Thursday to Saturday with some girlfriends, had a great time, did not sleep as well as I usually do, didn’t eat as well as I usually do, may have had a glass or two of wine, then came home and I had an event to go to Saturday night. And Sunday was Father’s Day here in the states. And I spent the day doing those two events. And on Monday, my memory was terrible. I could not remember the names of people. I couldn’t schedule things. It was really tough. So I used a lot of my cognitive reserve on all those events. So yeah.

 

Gina Beach (35:00)

Yeah, so it sounds like both some self-compassion, like know thyself and say, okay, if this is really important to me, I might need an extra day of rest and reset because obviously cog fog is a form of fatigue and we don’t always lump those together, but this is fatigue, it is a symptom, it is not your fault, but we can do some prehabilitation, like you were talking about having a schedule, a diary, I have so many alarms and reminders in my phone so that I’m not then beating myself up. I still miss stuff, whatever. I still show up late or I still, you know, it’s not perfect. It’s not a perfect system. But if I can preempt, okay, this is a time when I think I might have a mental slip up, then I feel just like less bad because I have my systems around me to bolster me up.

This person’s looking into Botox bladder injections, which have been recommended by their neurologist. They’ve looked into the research. It seems like a good option for them. Do you know of any concerns to be aware of?

 

Vickie Hadge (36:11)

Yeah, so we can’t give medical advice, but I will share that I do know some people that have used Botox and they’ve had varying degrees of success. I don’t have personal experience with Botox.

 

Gina Beach (36:26)

But I do so I can share my personal experience. I think the first thing, and I wasn’t, I don’t think I knew that there was gonna be a risk of not being able to void, but I didn’t take it maybe as seriously. So I think first really making sure that you are comfortable using an intermittent catheter, that you are psychologically prepared for the possibility that catheterization will become a part of your daily life because for some people the Botox works a bit too well and you’re unable to completely void. And then for other people, the Botox is actually unnecessary. And using the intermittent catheterization helps with urine retention. And suddenly you don’t have the frequency or urgency problems. So which might be a path of least resistance. So maybe consider doing that for a month or two working with your bladder nurse or your neurology team. And then with Botox, there’s also a risk that you may not feel the symptoms of a UTI. So some people with Botox get more frequent UTIs, and so being mindful of that, especially if you’re someone who has a history of struggling with that, which can be really debilitating. So lots to consider. but it definitely can work well for some people. And it wears off after a year. So if you really hate it, you know, it’ll go away. And then you can decide whether you want to re-up. And it usually works a little bit less well with each subsequent application. So, you know, you can decide whether you want to do it again or whether you’re like, actually, I want to manage this in a different way.

 

Yeah, good luck with the decision. It’s there’s always pros and cons to every intervention. This person learned about exoskeletons, which might be beneficial for long walks. Any experience or advice here?

 

Vickie Hadge (38:36)

I think they’re amazing. I haven’t used one myself, but I have seen several exoskeletons or stimulators that are external that are amazing. at the retreat that I was on, one of the attendees had the

 

Gina Beach (38:52)

Hypershell maybe?

 

Vickie Hadge (38:54)

No, the stimulator, the sleeve.

 

Gina Beach (38:56)

A neural the newbie? No, the neural link?

 

Vickie Hadge (39:02)

Yeah, see, this is the cognitive stuff. Yeah, the neural sleeve that has multiple sensors on the external, they can definitely help. And the exoskeletons are great because they take some of the load off and they support us. I actually saw one that was really neat, that it was an exoskeleton. And when you sat down, a leg came out so you could actually sit while wearing the exoskeleton. So if you’re hiking and you’re getting tired you can take a break and not have to find someplace to sit. There was a cool. Yeah, very cool. So I think the exoskeletons are a great idea as an assistant design device.

 

Gina Beach (39:37)

Yeah, and while they are not necessarily right now being used medically, there’s lots of research undergoing and there’s lots of great online communities of people with MS who are using these to go further to support their walking. So definitely find I haven’t used one, but I you know, I’m super, super interested.

 

Vickie Hadge (40:02)

You brought up communities, Gina. I’m gonna plug our online community. Overcoming MS has an online hub, which is our community. If you go to our website and you look for community or online hub, you can join there. There’s lots of great people on there, very helpful. I’m sure someone on there has used an exoskeleton. So make sure you make good use of the online community with overcoming MS.

 

Gina Beach (40:28)

Great, great plug. Thank you. this person says, Some days I feel like my fatigue is really well managed, but this is few and far between. How can we make these days happen more often?

 

Vickie Hadge (40:42)

Follow the pillars of overcoming MS.

 

Gina Beach (40:45)

Yeah, and I think exercise is underrated. I think it’s really hard to exercise when you’re fatigued. This does not mean you have to do like a thirty minute intense vigorous exercise. You can space it out five minutes here, five minutes there, do some stretching, do some bed yoga, do like the minimum threshold to get to your to your exercise, it really does make a big difference. And then keep that fatigue diary. Because some sometimes you just don’t know. And you then you realize, I ate this thing or I did this activity or this person is draining me. And every time I see them, somehow I have a bad fatigue.

 

Vickie Hadge (41:33)

And on the good days, saying, hey, I had a really good day today with no fatigue. the temperature was great. I didn’t overdo it. I ate this for lunch. Figure out the things that support you individually. MS is called the snowflake disease. We all have it differently, we all experience it differently. So keeping the log of what affects us negatively and positively is a great way to manage our symptoms.

 

Gina Beach (41:57)

Thank you for that reminder. I am very, I think we all are kind of negativity biased. but it’s actually, you’re right, it’s really good to celebrate those wins and to unpack that and say, how can I replicate this between these great days that I’m having. All right. Let’s hear your best tips for overheating. Summer is the worst. We want to be able to regulate our body temperature better. A lot of us deal with Utoph’s phenomenon where we cannot regulate our body temperature. What works for you?

 

Vickie Hadge (42:28)

Yeah. So I mentioned it a couple of times, sipping ice cold water. I’m having a good thermos that’s full of ice, ice cold water, keeping it on hand all day long and just continuing to sip that throughout the day will definitely help. Having a cold neck wrap, something that’s wet, the evaporation will help keep us cool. A neck fan is nice. I have one. A lot of times people will have it blowing up. So it cools their face, but you can also turn it over and it can blow down.

So it can help evaporate the sweat off our bodies as well. I also have a cooling vest. The one I have is made by a company called Therm Apparel. And I really like the Therm Apparel vest because it’s discreet. It can be worn underclothes. So it doesn’t look terrible. It’s very easy to re-chill and it’s quick to re-chill. And it’s cool without being frigid. You don’t feel like you’re putting ice on your body. It lasts a good hour or two for me. It’s great if I’m going out like to an outdoor concert or if I know I’m gonna be working in the garden. So this can help. But being aware of shade or bring your own shade with you. Get a big floppy hat, bring an umbrella. anything that we can do to help with the heat is good. And of course, if you can find air conditioning, stay in the air conditioning.

Gina Beach (43:50)

Yeah. And I think preempting this, I’m sometimes guilty of not realizing I’m like the frog in the pot. And then suddenly I’m already too hot. So having ice with you or like knowing like where you’re gonna be and where the shade is and putting ice on your pulse points and dipping your feet in, you know, cold water, whatever you know, whatever you need to do by those. And you just have to say, Okay, this is this is me taking care of myself, because if I’m too hot, I can’t think, I can’t work, I can’t do anything. So making that a priority.

 

Vickie Hadge (44:32)

Yeah. And another tip for fatigue is we don’t always know it, but when we’re taking showers, it can really fatigue us. And then we get out of the shower, we are exhausted. The heat of the shower can take it out of us. I really encourage you all to experiment with turning your shower to cold for as long as you can stand it before you get out of the shower. You might be pleasantly surprised at how it can boost you up and you can still get dressed and go to work.

Gina Beach (44:57)

Yeah, I will second that for sure. this is an interesting question.  How can you tell whether a symptom is caused by MS or if it’s caused by something else?

 

Vickie Hadge (45:10)

A lot of times it’s recurring symptoms. So if we’ve had a relapse, like I said, my left side is affected mostly by my MS. And my first relapse in 2006 resulted in profound foot drop. And I know when I’m having symptoms in that left leg and that left foot, that’s my MS. Sometimes when I’m fatigued or I am having cog fog issues, I’m not exactly sure if it’s MS. And I do communicate with my doctor.

I try to keep track of how I’m living my life. Has it been stressful? Have I been sick? If I come down with a cold, sometimes my symptoms will flare. So the short answer is you can’t know 100%. But a lot of times, if it’s a flare of something you’ve already had before, chances are it’s your MS. If you have a new symptom that lasts more than 24 hours, definitely call your neurologist, your MS nurse.

 

This could be a a sign of a relapse and you really need to be seen.

 

Gina Beach (46:11)

Yeah, I think that’s all very sound advice. what exercises are good for mobility? You talked a little bit about steadying yourself and balance issues. This person wants to stop falling so much and gain more confidence.

 

Vickie Hadge (46:31)

The answer to that is functional exercise. And I learned this from Dr. Gretchen Hawley as well. Please check her out on our website. She’s done a lot of webinars and she continues to provide content for us. Functional exercise helps us with the function we want to do. So if we’re having a hard time going up and downstairs and we’re working out on a recumbent bike, that’s not going to help us climb up and down stairs. We might get really good at working on the recumbent bike and we can go for hours on it, but it’s not helping us go up and down the stairs. So we need to work on the exercises that are going to help us work the muscles that we need to use to do the function. Many times we have problems with strength and standing and working on specific exercises to get us from sitting to standing. That’s very different than going to the gym and lifting weights and pushing heavy weights with our legs. Strength training is important, but doing functional exercise that’s gonna help with the function that we want to improve is really important.

 

Gina Beach (47:41)

Yeah, great. so our next question do symptoms change as we get older or is it totally individual, person to person?

 

Vickie Hadge (47:53)

I’m gonna say it’s individual, person to person. Our symptoms can definitely change, but they can change for the better. Again, glass is half full. Things can get better. I have mostly recovered from my foot drop from 2006. So things can get better with time, but things can also get worse with time. I am now postmenopausal. I don’t have the muscle strength that I used to have, and I don’t have the endurance that I used to have. I’m working on it.

I’m working with my physical therapist and I’m trying to get the get used to lifting weights all the time, which I didn’t have to do before menopause. So yeah, age can definitely affect our symptoms for sure.

 

Gina Beach (48:36)

All right. And then can you help us with explaining fatigue to people who seem to dismiss it and say, yeah, I’m tired too. This is a common one. How can we describe this neurological symptom of fatigue in a way that the people around us can better understand?

 

Vickie Hadge (48:59)

Wow, that is a tough one. I personally don’t try to explain anymore. I can say that I’m having symptoms, and if they say, yeah, I’m tired too, or I didn’t sleep well, or yeah, if you just sleep better, no one can understand our symptoms. I can’t understand Gina’s, she can’t understand mine. We can sometimes do ourselves a disservice in trying to over-explain.

It frustrates us. They’re still not gonna get it. So I just have kind of given up trying to explain. If I can’t participate in something, I will let them know why. I cannot go on that hike because my leg is symptomatic today, or I can’t attend that outing because it’s going to be too hot. So I need to stay home. but I don’t try to justify or explain the symptoms because people aren’t really gonna get it.

I love my husband. I love him to pieces. But even he admits he doesn’t understand. He doesn’t get it. He’ll never experience MS fatigue. He’ll be tired. He gets ill, like when he had COVID, he experienced fatigue with COVID. But people aren’t going to really understand. If there’s someone really close to you, I invite you to say, hey, this is important to me. Can you hear me? And if you say it’s important to me sometimes that clues them and then they go, I need to really listen.

 

Gina Beach (50:32)

I actually really love that, just saying I’m having MS symptoms, I can’t do that, versus trying to label it or trying to over explain yourself and just letting it be a little bit vague, maybe, is actually self preserving.

 

Vickie Hadge (50:50)

A tip that that is related that my therapist gave me years and years and years ago. When someone says something controversial, trying to drag you into an argument you don’t want to be in, or is being confrontational and says something to you, a very acceptable response is, huh? And that’s it. You acknowledge that you heard them, you don’t agree with them, you don’t disagree with them, and then you can change the subject.

 It has freed up my emotions so much. I just say, huh, and then I move on because I know I’m not gonna change them and they’re certainly not gonna change me.

 

Gina Beach (51:32)

That’s great. And then we know that that rumination then leads to stress, which leads to more symptoms. So the more we can distance ourselves from anything that is causing distress in the body is probably beneficial for us. What tips do you have for managing spasticity in the legs?

 

Vickie Hadge (51:52)

Stretching. Stretching helps me the most with my spasticity and staying hydrated helps me with my spasticity. I also take baclofen. It is a muscle relaxer. Work with your doctors if you’re having spasticity that’s interfering with your life. One of my favorite, favorite things to do when I’m having spasticity in my legs is to do a yoga pose called up the wall. You lay on the floor, you put your butt up against the wall, you put your legs up against that wall.

And just lay there for a few minutes. And this really helps calm down my spasticity.

 

Gina Beach (52:26)

Yeah, that’s great. I like my massage gun. I take electrolytes, especially magnesium can help with spasticity, gentle movement, all of that. But yeah, it’s really debilitating. So any advice for talking to young children about MS?

 

Vickie Hadge (52:47)

Yeah, I think be honest with them. Try not to go down the road that we are told when we’re diagnosed. It’s progressive, it’s degenerative, it’s incurable. That’s scary.  Everybody has something. Everyone has something. One and three have cancer, heart disease, diabetes, the everybody has something. Our something happens to be MS. And we can explain it in very simple terms.

I get tired sometimes. My muscles don’t work as well sometimes. I’m not able to do things that other people are able to do. I use a mobility aid so I can do more things with my aid. keep it simple. don’t try to hide it. I have a grandson and I have a granddaughter, and they know that meme can’t do all the things, but I instill a lot of fun with them and I do other activities that don’t require the physical output. So yeah, just keep it simple. Be honest.

 

Gina Beach (53:50)

Yeah, I think that’s great. It’s easy to do all the things when we’re reminded of MS, but what are the tips for handling the daily meditation and the exercise and eating well when you have few or no symptoms and it feels like, I’m feeling good. Maybe I can like take a break from this now.

 

Vickie Hadge (54:14)

Yeah. habit stacking is what I call it. So think of something that you do every day. Brushing your teeth. Every day you brush your teeth. So stack a habit on top of that. Every day after I brush my teeth, I’m going to do my stretching. Every day after I brush my teeth, I’m going to do my mindfulness. So stack those habits so you don’t even have to think about them. I’m going to take my supplements, I’m going to take my vitamin D every day with lunch. So it becomes a habit. Stack them together. And then they become you don’t even think about them anymore. One of my habits is I go to the farmer’s market every weekend. It’s fun. I get out, I get really good food, and I’m setting myself up for success during the week. It’s a habit that we do weekly. so habit stacking is my tip. How about you, Gina?

 

Gina Beach (55:08)

Yeah, and I think reminding yourself that this is the benefit of doing those habits. Feeling well is the goal, feeling as well as we can, living as well as we can with the least number of symptoms or flares. And so celebrating that that we’re not. The reason I’m I’m having a good day is because I did all of the things and trying to use that to maintain the momentum. Yeah.

Thank you so much for sharing your expertise, for sharing your experience with us today.

So thanks all for joining us today. Thank you, Vicky. Take care. We will see you very soon. Bye, everybody.

 

Vickie Hadge (55:52)

Bye, everybody.