Then there are phantom symptoms, where we “feel” the sensation of such things as bugs crawling or water dripping on our skin, when in fact there’s nothing there.

I’ve recently had a go with a phantom sensation that had a real effect.

Pruritis, Otherwise Known as ‘Itching’

Some members of our Life with MS blog community have mentioned pruritis — also known as the MS Itch — as a symptom of their MS. This isn’t an itch caused by anything external; rather it’s caused by yet another short circuit of our central nervous system wiring.

I’d never experienced MS-related pruritis before, and I didn’t like it when I did. Neither did my skin.

I was watching our county football team in the provincial championship match when Caryn noted that I was occasionally rubbing and then scratching my right forearm. She pointed it out to me, asking if I’d been bitten or something, but I hadn’t.

Like pain from no injury or many of the other MS sensory symptoms, there was no obvious cause for this itch. But scratching didn’t stop it, nor did topical over-the-counter treatments.

I tried to rub more than scratch, because I didn’t want to scrape myself raw. And then I just tried to let it go … until the next morning.

One Itch Begets Another

As I woke, I found that my arm was itching again, but in a different way than the previous day. When I looked at it I realized why.

My phantom MS itch — or rather my response to it — had left a patch of my arm covered with a pattern of tiny dots of scab that, taken together, looked like a child’s drawing of a map of the British Isles (though the Hebrides were a bit misplaced and quite out of proportion).

This patch of scabs was itching “for real” now, while the surrounding area still offered the MS itch. The interesting thing for me as I did my morning MS inventory was that I could tell the difference.

The North Atlantic area of abraded skin itched in a tightened-skin, trying-to-heal, “something caused this” itch. But the area around it felt more like a muscular sensation. It was as if the fascia beneath my skin was what I wanted to rub. It was something I might even put onto the MS pain spectrum now that I think about it.

Hoping Awareness Will Help Me Stop Scratching

And think about it I will. Now that I know what this phantom symptom feels like relative to a real itch, I hope to be more aware of how I respond to it. Fingers crossed that this awareness keeps me from spotting the bedsheets with drops of blood.

Caryn would appreciate that.

If you have stories to share of pruritis, the MS phantom itch, leave them on our Facebook page.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Maria Fuchs/Alamy

We’ve all seen the sliced images of our brains produced by those noisy MRI machines. They look somewhat like X-rays but show the soft tissue of the body rather than just the bones.

Those of us with multiple sclerosis have also — unfortunately — seen lesions on our white matter in the MRI images and perhaps even brain atrophy, or “black holes.”

I suppose that we’ve all also imagined what that stuff really looks like, and scientists at Cardiff University’s Brain Research Imaging Centre (CUBRIC) in Wales now have an answer for us.

Special MRI Reveals Structure of White Matter

Their advanced MRI machine, coupled with highly specialized software, has produced computer images of the white matter — just the white matter — of healthy brains and those of people with MS.

A BBC health reporter had his scan done and reported on the process and its outcomes this week. There is a short video in the linked report along with several still shots from the scans that show the structure of the brain’s white matter.

I guess I had imagined the “cables” and “wires” that make up the white matter to look more like some biological version of a mad doctor’s lab from a sci-fi film. I figured that the axons went from the inside of the brain outward and then down the spinal cord. The images from the CUBRIC MRI show the exact opposite — which, now that I think about it, makes perfect sense.

The images can even show which direction the signals travel on those axons, which may help establish which functions of the body are affected by which lesions in the brain.

The density of nerve fibers (so thin that it would take 50 of them to equal one human hair) is shown in exquisite detail.

Excitement, Morbid Curiosity, and Sadness

The feeling I got when looking at the images on my screen were not unlike those I felt when I attended an exhibition of preserved bodies in 2006. There was excitement, morbid curiosity, and a bit of sadness.

After all, for a person whose brain fibers are compromised by multiple sclerosis, it’s a stark reminder of how intricate the brain’s systems are and how difficult the task of curing this disease is.

Still, it’s another tool for researchers to use in searching for that cure. It’s a tool for our clinical teams to understand and explain the disease, what it’s doing, and how it is doing it. And although very few of us are likely to get this scan given the scarcity of these machines, the images help to explain to those of us with MS the part of us that is being attacked, and why we show symptoms the way we do.

At least, one can hope that will be the result of this progress in imaging technology.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Alfred Pasieka/Getty Images

I had an opportunity to talk about invisible MS symptoms this week.

While recording a two-part radio program (I’ll put up a link when it airs) in support of the Irish edition of my memoir, Chef Interrupted, earlier this week, the host of the show asked quite a few questions about multiple sclerosis (MS). He observed that my obvious symptoms seemed much less severe than those of someone else he knows who has MS.

It wasn’t the “but you look so good” or “you don’t look sick” sort of comments, but I knew where your man was going. So I brought up the analogy of the MS iceberg and told him that he was only seeing about 10 percent of what I was experiencing at the time. He seemed to understand that a bit better.

Resources for Explaining Invisible Symptoms

Invisible symptoms of MS are some of the most difficult to explain (and be believed about). The National Multiple Sclerosis Society has a great, two-part video about these symptoms (here’s Part 1, and here’s Part 2). They’ve also just printed a piece about some of the less common symptoms of MS in a recent issue of Momentum magazine.

The Frustration of Not Being Believed

I suppose having someone interview you and ask about these invisible symptoms is quite a bit different from having a family member (or friend, or employer, or insurance company) question whether we’re really experiencing these difficulties.

Just because they can’t see my vision problems or bladder symptoms or know that I cannot feel my left side (or be aware of so many of the other symptoms we experience), this does not diminish their existence. (Oh, how I wish it did!)

I wrote a piece for the MS Society of Ireland this week about the importance of not focusing on MS all of the time. It helps so much to not think about MS whenever we can. But when we feel that people don’t believe us (or we’re directly confronted by those who don’t), we can be forced to face the facts about MS more starkly than ever.

I can’t see atoms, but they’re there. I’m not able touch a star, but they are real. I cannot demonstrate everything that MS is doing to my body, but it is doing those things.

Some people may never understand that, and I really shouldn’t bother with them. But sometimes we must bother with those people, and it can be exhausting.

An Opportunity to Educate

I’m glad I had the opportunity to talk about some of the invisible symptoms of MS with someone who could get the word out to a wide audience.

I sure hope it helps.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo courtesy of Trevis Gleason

But I try to focus on the time in between the literal and figurative multiple sclerosis (MS) falls in my life.

Cherishing My Time Between Falls

A slow stretch of the legs down the laneway with my pack — my two Wheaten Terriers, Sadie and Maggie — today reminded me of that time between falls.

Yesterday was one of those soft, damp days that Ireland is known for. Thick, gray mist hung in the air all the day, and the long light of near midsummer through the thick clouds made for a constant shade from 5:00 a.m. until after 10:00 p.m. Days like that can make it difficult to tell what time it is.

The girls still needed exercise, but going out for long in that soup wasn’t high on my list, so I just threw the ball a bit for them. Our older girl, Sadie, came up a bit lame during our catch, thus (along with some MS sleep-related stuff for me) the short, slow walk this morning.

Even Songbirds Fall as They Fly

As Sadie and I hobbled (and Maggie darted about like a bunny on speed) down the bóithrín, a brace of songbirds shot past overhead in a flight pattern that reminded me of how I get on between those falls.

Their pattern of flight wasn’t graceful. The two did not glide effortlessly as they passed by. They wouldn’t be listed as players in any avian ballet. The birds flapped their wings once or twice to gain loft of a few meters and trajectory, and then folded their wings and fell.

They fell downward. They fell forward. They fell near — sometimes below, sometimes above — where they had first flapped. At times these birds were flying, but at times they were falling, just like I do … just like we do.

Like the Songbirds, We Move Forward

We flap when we can, as hard as we can, and try to gain a relatively stable place in our lives. We move forward in not always the most graceful of manners, and we move up and down in our world physically, emotionally, financially, spiritually, factually, and metaphorically. But we move.

To other birds — more graceful, more majestic, more suited for floating on currents of air — this couple of cousins may have looked odd at best, silly at least. And I must admit that I noted them for the oddity of their aerial maneuvering as well.

But they were flying!

So the next time I feel myself falling in one form or another due to this stupid disease, I’m going to try to remember those birds.

They make their way in the world the best way they can. Sadie and I were doing the same this morning.

And you know what? Even though Maggie might have liked to alter the way she played on the lane, she was happy just being with us … no matter how poorly we flew.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Vicki Jauron/Getty Images

Many of those reporting it have multiple sclerosis (MS), while others have ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) or migraine.

Leave it to me to be in such a small minority.

Far more people with MS report anosmia — a lack of or reduction in the sense of smell — and research seems to lend credence to these reports.

Artificial Scents Can Be Overwhelming

For me, it’s like my sniffer is on overdrive.

Particularly when it comes to artificial or “refined” scents, I am overwhelmed to the point of not being able to function. Laundry detergents (I can smell it off someone’s washing on the line three houses down and across the lane), soaps, “air fresheners,” and the like have been known to induce migraine and general malaise.

Natural Odors Are Also Strong

Natural smells, like flowers in the garden (or any of the neighbors’ gardens), cooking smells (from down the road), or the scent of the sea from miles away are strong, indeed, but don’t have the same adverse effect as those fake or overly enhanced odors do.

But still, I can smell something from another room as if it’s on the desk in front of me. I experience the smell of cut lumber from the construction site down the boreen (Irish for “country lane”) as if I’m holding the saw myself. Slurry (semiliquid manure) being spread on the hay fields miles away … well, I suppose all of us can smell that!

I Have Some Control at Home, but None Outside

We have changed the products we use in the house either to be unscented or to contain only natural oils as fragrance (although not all of those are as “natural” as they advertise). We use white vinegar to do much of the household cleaning. As much as possible, we avoid bringing powerful smells into the house. But that’s just home.

I go to the theater much less frequently than I’d like because I can smell soaps, shampoos, makeup … you name it. Even peoples’ deodorant can be an overpowering smell and, in a closed space, forget about it!

Is There Anybody Else Like Me Out There?

Like many others I’ve heard from, this state of being abnormal in my abnormality is a little disheartening. Sure people with MS have issues with smells, but why can’t mine be the same “issues” as everyone else’s? I just want to be normal in my being not normal!

As about half of the people with MS are thought to have reduced sensitivity to smells, I’ll not expect too many of you to be able to relate. It is nice, however, when someone else can say “ME TOO!” now and then. It feels much less lonely. So if you have MS-related hyperosmia, you can know you’re not alone.

I smell what you’re cookin’.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Getty Images

Why is heat such an issue for those of us with MS?

Multiple sclerosis is a condition affecting the central nervous system — the body’s “electronic system” — and electrons don’t function efficiently when heated (which is why your electronics have little fans in them to keep them cool).

Similarly, when the body’s core temperature rises even a little, a nerve that’s missing its protective myelin sheath (as happens in MS) has even less ability than normal to conduct electrical impulses.

Not everyone’s MS is affected by heat. Some people report that muscle stiffness and spasticity are eased in warmer weather and that they have a more difficult go of it in cold weather.

But for many of us, hot temperatures are a problem, and they demand strategies for staying cool.

Tips for Keeping Your Body Cool

The National Multiple Sclerosis Society lists the following as a solid start for avoiding overheating if you know that you’re in for a hot spell:

• Stay in an air-conditioned environment during periods of extreme heat and humidity. If an air conditioner is needed to help minimize MS symptoms, the cost of this equipment may be tax deductible if your physician has written a prescription for it. Your state may also have an energy assistance program for people with medical needs.
• Use cooling products such as vests, neck wraps, and bandanas during exercise or outdoor activity.
• Wear lightweight, loose, breathable clothing.
• Icy drinks or popsicles can provide temporary relief.
• Use an oscillating fan or air conditioning during indoor exercise.
• Exercise in a cool pool (water temperature lower than 85 degrees) or a cool environment. If you are exercising outside, pick cooler times of the day — aim for early morning or evening.
• Try pre- and post-cooling your body to decrease the heating effects of exercise. For example, get into a bathtub of cool water and continue adding cooler water over a period of 20 to 30 minutes to cool down before activity. A cool bath or shower can also help reduce core body temperature following activity or exposure to a hot environment.

Tips for Keeping Your Home Cool

Among the suggestions I’ve received are opening and closing drapery and windows to keep the sun and warm air out while allowing light and cooler breezes in from shaded parts of the house. I’ve found this can be of great use if it’s just a one- or two-day spell of heat. It’s also helpful to close off rooms that are not needed or simply can’t be kept cool.

For longer stretches of hot weather, spraying patios and pavement with water a few times during the day keeps them from storing as much heat, only to radiate it back later in the day. This is particularly helpful if you live in a brick or masonry building. It’s not so helpful if you live in an apartment or flat on a higher floor.

‘Precooling’ Before You Get Hot

Like our homes, the key with our bodies is to keep them from getting too hot in the first place. In addition to precooling yourself with a cool shower or bath, drinking iced drinks (but not, as much as it pains me to say this, those containing alcohol or caffeine), eating frozen treats (pop a bunch of grapes in the freezer and snack on them throughout the day), and even taking cool foot baths or wearing wet socks from the time you wake will make a BIG difference later in the day when the mercury climbs.

I began typing this blog in the early(ish) hours of the morning, before the heat set in. I didn’t, however, start early enough and, even with precooling, crashed at 11:30 a.m. — about three hours earlier than normal.

The best laid plans, methinks…

Keep cool, dear friends.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Jordan Siemens/Getty Images

Normally, my large collection of walking aids is kept in a corner by the front door. Depending on the weather outside and the way multiple sclerosis (MS) is affecting me “inside” that day, I pick one to use as I head out the door.

When I’m in the house, I usually use the same cane or do a bit of wall and furniture walking to make my way around — though I’ve now added a walking stick in the kitchen that comes in handy when I drop things.

Lately, though, I’ve noticed there are assistive devices stashed all around the house — next to the bed, the dining room table, the sofa, the fireplace chair, and in both bathrooms.

I Thought I Was Doing Well…

I’d been feeling pretty good (relatively speaking) for the past month and thought that I still was. All of these canes and crutches left about the house, however, are telling me that I’ve been having more trouble getting around than I think I have.

Caryn, my wife, confirms that I’ve been finding the walls to be insufficient support of late. Seems I’ve been leaving walking aids around so that when I need one, they are there … everywhere.

Caryn wasn’t the only one who noticed them. The woman who comes in once a week to help me out noticed the transplanting of my walking stick forest around the house as well.

One thing I can say is that I haven’t fallen this month. (Huzzah!)

Perhaps this new, and rather subliminal, coping mechanism of leaving supply depots around the house like some Antarctic explorer planning his return route has kept me off the floor.

But the Canes Tell a Different Story

Last month when we checked in with our Life with Multiple Sclerosis Self-Evaluation Scale (LWM3S), I rated myself a 5.

The LWM3S is a simple 1-10 scale in which:

1 = The best my symptoms have felt since my diagnosis with MS

10 = The worst my symptoms have felt since my diagnosis with MS

Given that I’m apparently needing a bit more help getting from point A to point B, and that I’m coping with that need without thinking much about it, I’d have to rate myself back up at a 6.5.

How about you? Using the LWM3S, how’s your MS today?

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Alamy

The sensation only lasts for a few moments to a few minutes, but when it happens, I have to wonder if I’m going to be able to stay upright, even if I’m using a forearm crutch.

While I don’t feel nauseated when these episodes hit, I can see how someone might. For me, it’s like the world is moving in a way I’m not used to, and I am trying to move through it the way it used to be.

I perceive my vertigo as something of a physical manifestation of what I’ve seen visually represented in film — like the ripples in the air in The Matrix — or something I’ve seen myself, like the view up into the sun from the bottom of a pool on a bright day.

It’s as if my body is experiencing things that previously only my eyes have seen.

While these recent episodes of vertigo have slowed me down a bit, they’ve been nothing like what I experienced before being diagnosed with multiple sclerosis (MS). Early on, I had a bout of world-spinning vertigo that had me in bed for a week and crawling to the toilet with my eyes closed to vomit. Thankfully, I haven’t experienced it to that extent again.

Creating Our Own ‘MS Symptom Thesaurus’

But why go to such effort to describe this symptom of MS? Why not just call it “vertigo” and leave it at that?

As many of you know, the symptoms of MS can vary not only in their occurrence, but in how each of us experiences them. And sometimes describing our individual experience of a symptom is difficult.

Back in 2013, I hit upon the idea of creating our own “MS symptom thesaurus” to allow each of us who has experienced a particular symptom to describe it in our own words.

Over the years, we’ve published entries on muscle weakness, fatigue, spasticity, speech problems, the “MS hug,” depression, and more.

The words you’ve supplied have helped others who may be having the symptom for the first time describe what is happening to them. Doctors, families, employers, and friends have all benefited from your explanations.

What’s Your Experience of Vertigo?

So what about vertigo? Remember that your description can help other people express what they’re feeling or even help them realize that that is what’s occurring.

As the comments section of this blog is still under construction, please use our Life With MS Facebook page to leave your descriptions of how vertigo affects you and to help build our MS Symptom Thesaurus.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Getty Images

Whatever the reason, I’ve liked gardening for a good while and find it a wonderful way to enjoy a fine day. And now that I have MS, gardening is nearly the perfect hobby for me, for a number of reasons:

• The best hours to work in the garden are before and after the hottest parts of the day, which are also the best hours for a person with MS to be active.
• Even a little bit of work in a small patch (which might be all that an MS day will allow) can show itself as a fine, weed-free patch.
• When (not if) I fall over, there isn’t far to go if I’m on my knees planting or weeding.
• Raised beds are the perfect height for leaning over or even sitting while puttering in the dirt.
• Gardening can be inexpensive if you start plants from seeds, and especially if you harvest your own seeds from flowers, fruits, and vegetables.
• We have some lovely shade beds as well as some partly shaded beds and full-sun areas, so I can cater my day to the weather (and my MS).
• There is no need to rush in the garden.
• Gardening gives me something “normal” to do alone or with my wife (and the dogs usually like to be involved on some level, too).
• A little bit of work in the garden on most days can make a difference that even the neighbors will notice and enjoy.

Face-Plant Averted — By a Rake!

But I learned a lesson in the past couple of weeks that I didn’t realize would help me in living with multiple sclerosis, and it had to do with an incident in the garden.

After tending one of our raised beds and getting to some of our seed starts (rainbow chard and escarole), I was using the long-handled claw rake that I’d been using to turn the soil as a walking stick on my way back to the garden shed. The wind from the night before had knocked down several fronds from our New Zealand cabbage palms (Cordyline australis), so I decided to use the trek to the shed to clean up the mess.

As I bent down, I leaned on my rake-cum-assistive device, and it’s a good thing I did.

For whatever combination of MS “things,” I became quite unstable and was headed for a face-plant into the gravel. Had I simply been using a cane — my usual walking aid — a meeting with the ground would have been inevitable. But the heft and length of my rake allowed me to hold on and stay somewhat upright.

I steadied myself and was able to collect one — and then several — of the palm fronds and deposit them into the compost without a fall. I adjusted my posture, held the rake like the lifeline it was, and was up and down more than a dozen times. New discovery!

Yes, That’s a Hiking Stick in My Kitchen

When I cook or write (or do just about anything, really), I always seem to drop things. Retrieving them from the floor can sometimes have me down on the deck along with my quarry. Rather than relying on countertops and walls, I’ve now placed a long, sturdy walking stick (an old-timey, wooden hiking stick) in the kitchen where most of my dropsies occur.

With a large rubber tip to give me a solid base, the heft to hold my weight, and longer length so I can use it at variable angles, this new tool has saved me from at least three falls just this week.

Nothing Like Stumbling on a Good Idea

Who would have thought that the hobby I use to pass the time and give me a little bit of purpose in the neighborhood would lead to this fall-saving discovery?

It may not work for everyone, but if you fall as much as I do and have a large walking stick around, it might be worth a try.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Tetiana Chugunova/Alamy

I like to think that I have put many of the managerial skills I gained in running multiple kitchen facilities to use in living with MS. However, my “chefing” skills are oft asked about to help people living with the disease. I try to offer what tips I can.

In the past, we’ve posted a few healthy and easy recipes here on the blog. From savory oats to easy brunch favorites and simple roasted sweet potatoes, we’ve had a good time sharing some cooking notes over these past years.

My Secret Weapon From the Kitchen

But it’s time to share the No. 1 chef’s hack I use to help me live with MS.

Like many of you, my coordination is not what it once was. I often experience tremor of intent along with spasticity from time to time. Couple this with occasional nystagmus and I can sometimes have an issue getting food from plate to fork to mouth without making a mess.

Enter the bibbed chef’s apron.

I have used a chef’s apron since my early days in kitchens. It used to be that I would fold them in half to make a waist apron, leaving my chest uncovered. Only when doing something rather messy, like filleting fish or stirring great pots of something, would I flip up the bib part. But that was before multiple sclerosis.

Now I find that I’ve lost so many shirts, cardigans, sweaters, and ties to dropping, dripping, and otherwise airborne foods that an adult version of a child’s bib would be helpful. Well, for this former chef, that’s what an apron is.

Oh, Did I Forget to Take This Off?

When cooking for friends, I wear an apron and “forget” to take it off before coming to the table. When asked over for a meal, I always bring something (even if it’s just a loaf of bread) that will require a bit of kitchen work so I can don my apron and, again, seem to leave it on at the table.

I’m wondering if there is a way — other than ordering the lobster every time I go out for a meal — to use the idea in restaurants.

Just Don’t Call It a Bib

I was eating a meal of tapas with Caryn, my wife, on Sunday evening (a great way to get rid of leftover bits of this and that, by the way), when some juicy-saucy-oily mouthful of something didn’t quite make it to its intended destination and spilled all down the front of my apron. We laughed, wiped, and carried on, but it dawned on me how effectively this little addition to my dinner attire has saved so much of my wardrobe.

I figured it was time to share my favorite chef’s tip for living with multiple sclerosis: Wear a bib … but you can disguise it as an apron.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Photo: Stephanie Rausser/Getty Images