Tag: Multiple Sclerosis

Some new light

Previously

A few weeks ago I talked about being sick and having extreme tingles. I was beginning to think I might be experiencing my “new normal.” This must be how people with chronic pain feel most of the time.

Getting help

It occurred to me that relief could be found with the help of a chiropractor, so I made an appointment with the doctor my brother and sister-in-law see.

First, Dr. Morrow talked with me about my issues. Then he examined me and found that the range of motion in my neck was far below what it should be for someone my age (almost 48.) He took some x-rays and scheduled me for a follow-up appointment for the next day.

Diagnosis

My neck is a mess! A normal cervical spine has a curve like this:

Case courtesy of Dr. Andrew Dixon, Radiopaedia.org. From the case rID: 32505

Mine curves the other way. It’s called retro lordosis. I also have some disc degeneration, spondylosis, and a few other minor things that I won’t bother mentioning.

The fix

Luckily, things can get better. I’ve started getting spinal adjustments, ultrasound treatments, and traction three times a week. I’ll be getting physical therapy as well.

I’m feeling so much better. My range of motion has increased, and I no longer feel so broken.

I’ve been feeling angry at my body for having MS, being overweight, walking weird, etc. Nothing good can come from thinking that way. I need a paradigm shift!

Moving forward

Now that I’m feeling like a human, I can get back to regular blogging. I never realized how much energy you need to sit in front of a computer and type and think.

Coming soon

I see the Hematologist find out if my MGUS has progressed to Multiple Myeloma.

Sneak preview: My M protein number is higher than it’s ever been. 1% of people with an MGUS go on to develop Multiple Myeloma each year. The odds have got to be with me.

Illustration of dice

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A YouTube channel about MS

I’m always on the lookout for information about Multiple Sclerosis. Recently, I found Dr. Aaron Boster’s YouTube channel. Boster is a clinical neuroimmunologist specializing in multiple sclerosis (MS). He is based at OhioHealth in Columbus, OH.

Here’s a recent video from Dr. Boster about MS symptoms. He explains how one symptom can effect other symptoms. I recommend visiting his channel for more useful videos.

Look for Aaron Boster on these social media channels:

The not so common cold

I think I’ve been suffering from a cold for the last week or so. It’s hard to tell with me. When I think I have a cold, I get a little post-nasal drip and congestion behind the eyes. I don’t get the traditional stuffy nose. My energy level is lower than usual, and I need to sleep longer than I usually do. During these more prolonged periods of sleep, my dreams are more intense and involved.

I think that my colds last longer because I have MS.

Do a search on ‘MS and the common cold,’ and you’ll find tips on avoiding a cold like staying away from sick people and washing your hands. Some sources hint that a cold might trigger a relapse. When I see that, I start to wonder if I’m having a relapse. I tell myself that probably isn’t the case and then start Googling.

So much and so little

It seems like there are tons resources for learning about MS. It seems that way, but I keep running into the same info. Maybe I’m looking for something that will apply to me specifically. That’s not going to happen, because MS is different for everyone who has it.

Rest is important

All of the experts emphasize the importance of rest. I was looking for something definitive about overdoing it and having a relapse. I couldn’t find anything, but it seems like it’s a good idea to treat yourself well. Get regular exercise, but don’t push yourself to exhaustion. That’s good advice for all of us.

Here’s a brochure from the National MS Society on managing MS fatigue. It doesn’t have the personalized answer that I’m looking for, but it gives me permission to take a few naps every day. I might just give that a try.

The quote is from Lalah Delia. Learn more about her here.

Keeping your balance when you have MS

Balance problems and difficulty walking are two of my most troublesome MS symptoms. Luckily, there are exercises I can do to reduce the impact these symptoms have on my everyday life. 

Cat walking on a fence

Even if you don’t have a neurological condition it’s a good idea to add balance training to your fitness regimen. Start improving your balance with the help of these articles and videos. Consult your doctor before starting a workout program if you haven’t been active for a while. 

Living with MS: Avoiding Falls

Multiple Sclerosis (MS) is a neurological condition that affects a person's brain and spinal cord. Some of the most common symptoms are fatigue, visual disturbances, altered sensation and difficulties with mobility (balance and walking).
This list features articles about improving balance, strength, and mobility.

Free From Falls : National Multiple Sclerosis Society

This eight module program is designed to increase your knowledge about risk factors associated with falls and provide you with strategies to reduce your risk of falling.

Exercises to Improve Balance for People With MS | Everyday Health

Balance problems caused by multiple sclerosis can make walking a challenge, but some simple exercises can help.

MS: Exercises for Better Balance and Coordination

Not only is exercise is a good way to improve some of the physical effects of MS, but it can also help you regain balance and coordination. Here are several moves you can try.

Improve Your Balance : National Multiple Sclerosis Society

In order to improve your balance, you may have to lose your balance! You CAN address balance problems by challenging them. By sticking to a program that is safe, yet pushes you to your limits, your balance can gradually improve.

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Improve your balance and stability workout | Move more with MS

Improve your balance and stability workout | Move more with MS

Join Dom, Koz and Samia while they demonstrate some simple leg exercises that help teach you how to stabilise your body for better balance.

Balance Exercises For MS: 3 point Toe Touch

This is a great exercise to improve balance while changing directions. Often times, people with MS feel are fearful and non-confident in their body due to fe...

MS Yoga Balance

A short yoga practice that uses a chair for balance.

Body Balance Meditation — Meditation Oasis

A mind/body approach to physical balance.

Yoga and MS

I started doing yoga in the 80s when I bought the book, Raquel: The Raquel Welch Total Beauty and Fitness Program. I practiced on-and-off over the years and got a little bit serious about it when I lived in Champaign, Il and took an Iyengar class from Lois Steinberg.

I’ve taken classes on and off in Bloomington, but mostly practiced at home with my trusty Rodney Yee DVDs. I took a class for about three weeks at the YMCA a couple of years before I was diagnosed with MS. I had trouble keeping up because of what I now understand was MS-related fatigue. I found that my legs worked better after taking the class.

These days I find myself downloading yoga apps to my iPad. There are a few good ones, but sometimes the pace is too fast for me. I know enough to be able to practice without step-by-step instruction, but that keeps me in my comfort zone. I’m more likely to do the asanas that aren’t so easy if I have the guidance of a video.

In my quest for a way to make yoga work for me, I stumbled upon Adaptive Yoga Moves Any Body (Created for individuals with MS and neuromuscular conditions) by Mindy Eisenberg. I’m not sure if it’s exactly what I need, but it should be useful. I’ll post about the book sometime in the future.

Exercise is so important for people who have MS. Yoga can help build strength, flexibility, and peace of mind.

Looking to get started with yoga? Check out 5 Yoga Poses for People with Multiple Sclerosis (+ Easy-to-Hard Variations) from Yoga Journal.

Woman in vrikshasana (tree pose)
Photo by Nathan Cowley on Pexels.com

Fun with imaging

I got my yearly brain and spine MRIs on Monday. I’m fine with being in a confined space for a significant amount of time (the whole thing takes about two hours). You even get music these days. I think they use Pandora. I chose music from the 80s. The 80s and the 90s were my eras for music by the way. I was treated to some Janet Jackson, Dream Academy, John Mellencamp, Duran Duran, Roxette, Chicago, Julien Lennon, and Power Station. There must have been more, but that’s what I can remember. I fell asleep for a little bit.

MRI on screen
Stock image of an MRI in progress

Anyway, the worst thing about the MRI experience is the feeling of nausea and sometimes near vomiting that happens when they inject the contrast. I warned them at the start and had the lab tech bring a receptacle for me just to be sure. She started the contrast and asked how I was feeling. I was okay. Then she said they had begun using a new formulation of the contrast that had fewer side effects. It was like a miracle. I did not feel any nausea. For once, this yearly check on the lesions on my brain and spine caused by MS was a reasonably okay experience. The worst part was having to get there at 8:00 in the morning.

The doctor’s office called on Tuesday to say everything looked stable. I’d say the three Copaxone injections each week are doing the trick. I’m hoping I can get on an MRI every five years schedule. If that’s a thing they do.

Three years until my first colonoscopy! Huzzah!

Thinking about the body

Yesterday

I’m at my local Planet Fitness recovering from my 20-minute treadmill walk and a smattering of strength training. I need this recovery period to get my legs working a little better. I’m uncomfortable crossing the road to get to my car.

Treadmills at Planet Fitness

Today

I’m at home on the couch continuing the post.

I’ve been thinking a lot about body image. I’ve gained weight over the last couple of years and I find myself not liking my body. I’m letting myself get worried about the food I eat. I feel guilty when I consume unnecessary sugar.

I don’t want to be that person.

My body has served me well for 47 years. I can say that even though I have MS. I could berate my body for betraying me, but I’ve gotten past those feelings (mostly).

I know from experience that a good way to improve body image is to use your body and appreciate how that makes you feel.

I sleep better at night on days I’ve worked out. My mood improves. I feel proud because I’m taking care of me.

I think if I focus on taking care of myself, the good feelings will follow. That means not worrying about every gram of sugar I ingest and letting my body rest when it needs to.

Funny how things become more clear when you write about them.

“Lighten up on yourself. No one is perfect. Gently accept your humanness.

Walking the walk

I can’t remember exactly when it was that I realized I forgot how to walk correctly. I don’t know that there is necessarily a “correct” way to walk, but a time came for me when walking didn’t feel natural. Now I know this was a symptom of my undiagnosed MS.

I looked for gait training resources on the internet. I picked up pointers from The Gait Guys, and Core Walking with Jonathan FitzGordon. I started to pay attention to the way my feet were striking the ground. I adjusted my posture. I tried to walk with my toes forward instead of turned out like a dancer. I thought about hip flexion, and arm swing, and hip rotation. All of this only served to make me more confused than ever. Trying to make your walk natural is probably the most unnatural thing you can do. It was for me.

The blogger at 2 or 3 years old
When walking was new and natural.

Now that I have an MS diagnosis and I understand why my walk is a little weird, I’m not as worried about it. I still try to be mindful of posture and heel strike. I have a little bit of foot-drop on the left side, so I make an effort to dorsiflex to reduce the risk of tripping and falling. I guess it’s possible that my body and brain have made adjustments to overcome the neural miscommunication that MS causes.

That being said, I still feel self-conscious about the way I walk. I tell myself that people are not watching my walk and judging me on it, but I also feel that people must be watching and judging.

Nothing to do but take life one step at a time.

Shopping blues

I tell people my MS symptoms aren’t that bad. Many people with the disease have it much worse than I do. All that is true, but for me it’s the small inconveniences that get me down.

Shop ’till I drop

Shopping for clothes used to be fun. I can’t count how many hours I spent with my mother in malls and big retail stores. I remember us going around looking for bargains on back-to-school wear. Designer jeans were a must for me in the early 80s. I owned the requisite headbands, neon sweatshirts, and even a pair of parachute pants.

Tangent

The blogger in 1980s attire.

I’m reminded of how much I loved paging through Seventeen Magazine. I thought that having the right clothes would make me feel the way the models looked. Unfortunately, trying to emulate those fashion models only led me to feel too fat and not pretty enough.

Anyway

These days shopping is difficult because MS fatigue makes it so. Things will be fine for the first 15 or 20 minutes of being in the store. If I know exactly what I’m looking for, I can make my purchases and get out without a problem.

Trip to Goodwill

I went to Goodwill the other day. The goal was to buy some jeans. I like shopping for clothes there because it feels like it’s somewhat removed from the sweatshop produced clothing that I might find in one of the popular chain stores.

So, I easily found some jeans (supposedly) in my size. I brought 5 pairs to the dressing room. Two fit and three did not. I was beginning to tire at this point, but I was on a mission.

I found another four pairs and went back to the dressing room. This time all of the selections fit (for the most part).

Now my legs are fairly fatigued and my balance is getting a little wobbly. The hard part was over, but I could use some tops. So now I’m browsing the shirt racks while holding six pairs of jeans. Luckily my husband is there to relieve me of my load while I continue shopping.

Finally, I decide to call it quits. We head to the checkout and stand in line. My walk to the car is slow and careful. Uneven surfaces are not my friend.

Time to go home and sit for about half an hour. I’ll have to rest before taking a shower, because that can take a lot out of me too.

Little Meltdown

I felt a bit broken the other night. I was watching Crazy Ex-Girlfriend (like I do). They did a musical number that was a Soul Train. takeoff. You know the bit where the dancers make two lines and people. take turns showing off their best moves for the camera. Heather, the character played by the gorgeous Vella Lovell, took her turn. As I watched her, I started feeling sad that I can’t dance like that. I started feeling sorry for myself because MS has taken away my ability to do what I want to do with my body.

The truth is that although I have a Bachelor’s and Master’s degree in dance, I was never a great dancer. So me thinking that I could dance like before MS Vella is ridiculous.

I was in bed with my husband when I had my crying meltdown. He reminded me that I can still dance. I can. I don’t use a wheelchair or a walking aid. He also brought up the fact that I’ve been a bit burned out on dancing for several years. He also suggested that any dancing that I want to do would be easier if I lost some weight. I do need to lose about 30 pounds, but let’s not get into that right now.

The day after the meltdown I felt some measure of shame. If it’s true that I chose to have this illness (when I was between lives), as a means of fostering spiritual growth, I have no business whining about it.

Also, there are so many people who have it worse than I do. I should be grateful for the strength that I do have. I’m not broken. I am perfect.

Laura McCain Reed
Non meltdown moment

Vella Lovell
Here’a Vella