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| Exercise to keep on cruising |
Continuing to feel good is my goal. So, I exercise! I’m addicted to the “natural high” I get.
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| Jeanne, plans my workouts |
The Olympics are over. Who are the winners? Certainly the medalists, but also all the Olympians. What is your Olympic challenge? Mine is MS and working to overcome the debilitating effects of the disease.
The most obvious issues are physical. I’ve been going to a trainer for years. Since starting back after Covid, my trainer has been Jeanne. When either of us see a new area of weakness, she makes a plan to address it. Recently, I told her , “I want to be stronger so I can walk farther and faster. Donnie says I act tired after three miles. He notices my toe scuffing, slowing down, and being unsteady. I want to be able to do four strong miles in one walk.”
At piano lesson
Once upon a time, I could dance, play piano with reasonable skill, certainly keep a beat and clap, but then I couldn’t. Had I paid attention to losing my beat, maybe I would have gotten diagnosed sooner. All the issues turned out being Multiple Sclerosis. One lesion in my brain impacted my rhythm.
Early in this journey, I heard that music was a great therapy for MS. My neurologist concurred. He said, “Do it if you can. One of my patients can't play anymore because she lost her finger strength.”
Taking lessons again after forty years, I understand. My finger strength is okay, but spasticity is the problem, throughout my upper body. I never knew! Hands, shoulders, fingers, all are stiff, slow and awkward. I found that repetition and finger drills help. Piano is all about practicing, trying to improve and knowing it’s therapy. is, there is some transfer to walking! My ear for hearing pitch also improved. What happens in the brain is a mystery, and all good.
Walking with Donnie
In an article about music as therapy for MS, I found validation for:
I am seeing results in all these areas, but I notice tremendous improvement is walking. This year I’ve been focused on my walking stride and gait. After falling several times relatively close together early this year, I became tentative and fell into some bad habits. I consulted with my physical therapist and asked, “What do you think about going back to basics?” He suggested several strategies that began working quickly.
At physical therapy with Thomas
Then, Donnie had an idea while we were walking, (He’s always thinking.)
“What do you think about listening to music while we walk?”
I don’t know. I like the idea, but I don’t know how to get started. Maybe Thomas (physical therapist) has some ideas on this. Maybe he can help me get started.
“Good. Athletes listen to music while exercising and I see gym people with headsets or earbuds. There must be something there.”
Thomas did have thoughts. He thought it was worth trying even though he wasn’t aware of any research based articles on the subject. He suggested earphones that fit on the bones outside the ears. They operate on the principle of vibration
“I like that option! I didn’t know and much of my reluctance to embrace earbud is because they have always given me ear infections.” I’m going to ordered them.
Dancing at nightclub on cruise
I can use my phone where I walk at home. After two weeks, I’m having great results. Everyday, I have fewer missteps even on our long walk. My pace seems to be improving as well. Any upbeat music energizes my step. Even the fourth mile is relatively smooth. The genre of music doesn’t seem to matter. We both like the same music and surprisingly, upbeat classical is one of our favorites.
Why did I wait so long to try music for walking? Small issues got in the way. I’m so glad Thomas helped me get started. I can’t explain why music works for me, but it does. I’m a believer now. The brain is a mystery and it’s all good. Wish I had gotten on board years ago! I see more dancing in my future!
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| Caribbean Cruise - St. Kitts |
Are you listening to me? You have compelled me to take drastic action. You are tentative, discombobulated and totally uncooperative on this walking thing. You know how encumbered I feel being tethered to Donnie. I hate it, but I had to on the ship so I wouldn’t fall and create a scene. Now, I’ve had enough! What do you have to say for yourselves?”
Body
We had lots of extenuating circumstances on the ship. We’ll start with the narrow track. It was a nice track with a smooth surface, but it was tacky. Feet were prone to catch on the toe-up motion. It was wide enough for two people, walking side by side, hand in hand on most of the track. It was the narrow, curvy places that really put us on edge.
The biggest problem was all the people! Walkers and some runners, all going faster than we can go. We must complain too about the gale force winds that kicked up several mornings. There, that’s most of our issues that hindered performance.
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| Wide, straight stretch of track |
Body
No, not walking school! We thought we were done with that years ago.
Mind
Think of it as a refresher course. After just one lesson, you are already improving. We all want the same thing and we’ve come a long way since we started. We started this journey at least eight years ago. You surprised me a couple years ago when you began moving fluidly. That’s why I’m sure we can do better.
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| Working out on the ship |
Body
Alright, we admit to getting distracted easily. We noticed your new pre-walk drills. We cooperate at the gym. We will do our part, but we need you to keep us focused. We’re all in. Just tell us what you want us to do.
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| Sunset and cocktails |
Body
That definitely sounds right. So your job is to get our motion started?
Mind
Well, I’ve only had one lesson, but theoretically you are correct. Starting the motion seems to be the hardest part of my job. We need lots more lessons because everything still feels awkward. I can feel when you are moving in a relaxed fluid motion. I am easily distracted too and forget to concentrate. I am hoping we will all learn to walk without thinking.
Another thing, since I’m in charge, I’ve decided to ramp up massage and acupuncture treatments for several months. Let’s just see if these therapies do what I think they do. I don’t see a down side. We’ve got this! Right?
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| Relaxing time before dinner |
Another factor we have to consider is aging. My neurologist suggested that some decline may be attributed to the type of MS I have - Primary Progressive. She prescribed focusing Physical Therapy totally on balance and stability while walking. You’ve already noticed the drills he has me doing. I think they are working.
Regardless, we’ve come a long way. Keeping everything in perspective, since we are expected to be declining, we are doing well to hold steady. It all takes a long time and we work on it everyday. I’m confident his strategies will strengthen the mind, body connection.
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| Walking independently - before |
We seem to have a tit-for-tat relationship. Your main thing is to trip me up. I on the other hand rant, rave and plot to keep you in hiding. Just when I started feeling really good in my gait, sure footed and relaxed, you decided I needed to be given a good dose of humility. I’m just guessing that ’s why you threw me a zinger. On the other hand, maybe I was wrong giving you all the credit. Is aging trying to get in on your action? What do you think?
MS responds
Calm down. I mean no harm. Do you get hurt when I throw in those zingers? Sure, aging handicaps recovery time, but to give aging credit or blame seems to be a stretch. Age also likes to zap your energy. Right? Do you bounce back with the same zest and confidence you use to? Way back, twenty years ago, aging wasn’t so much an issue. When I first started messing with your psyche, you tried to ignore me. My goodness, we’ve been through a lot together!
Working on balance and agility
Yes, and it’s not all been good. To this day you are on my mind, sun-up to sun-down. When I’m walking, working around the house, exercising, you are always there. My goal has always been to minimize your effect on me. The first fourteen years, I learned to live with you, but lost ground in terms of your effect on me. Now, since I know I have the Primary Progressive form of MS, people say,“You’re doing great! You’re suppose to be getting worse, right?” I say, “No, I can do better.”
Lost my grip on a full quart jar
You and aging both seem to enjoy attacking muscle strength slowly, at a snail’s pace. All of a sudden, a muscle group doesn’t function like it use to. For example, recently I noticed my grip is too weak to open jars! Handling heavy objects is a big problem. Recently, I dropped a full quart jar of juice on my foot. That really hurt. Was that you or Aging? I think you also play equal roles in cognitive decline. Losing my mind is the scariest. Anyway, I work hard to minimize both physical and cognitive decline.
I guess you’re right, but I had not thought about us having much in common. As you age you are suppose to have issues with balance and you are supposed to lose muscle mass.
Hot Yoga outing in Laguna Beach, CA
No, MS, you exacerbate everything! I have friends in their nineties who are doing incredible physical things. They still travel the world, ride elephants and skydive. Not me. My goals are basic: keep moving and feel good.
Just to do that, I need lots of people.
To your credit, doing that hot yoga, really slowed me down. I think you might be in a wheel chair or using a walker now if not for that therapy. I lost traction on those physiological issues like frequent headaches and constipation and excess gas. I can see you are happier now. I really hate to give hot yoga so much credit, but they did minimize spasticity and joint stiffness. I think that was the tipping point allowing your walking to improve.
You ganged up on me with all those therapy people. One treatment at the time, you cut me out. I had to up my game. All I have left is playing with your walking and messing with your mind. Right?
Incentives! Loleh and little brother
MS, you are too much! NO, NO, NO! I won't let you mess with my mind! Absolutely, I have ganged up on you. Now, Donnie and I are double teaming you. We have a plan to increase my walking confidence by improving my gait even more. For example, we know that I’m more vulnerable to your evil ways when I’m fatigued, distracted, or going to fast. I’m using all my tools intentionally to regain independent walking. It’s coming back.
I know that my reality is living with Primary Progressive MS. I figure that I am probably more prone to the effects of aging than other people my age. On the other hand, the same therapies and interventions I use to manage MS are reported to also slow down aging. Best I can tell, I’m in a win - win situation. I’ll keep doing what has been working.
I am obsessed with walking. It’s true. Actually, I have been obsessed for a long time. What I want is comfortable, effortless walking. I remember what it felt like and occasionally, I feel close to that. I started noticing my walking way back before I knew I had MS. By the time I was diagnosed, I had to think about walking constantly. 
Walking up driveway
For twenty years I have been identifying problems. These are the big ones:
1. Walking straight without listing to the left.
2. Picking up my right toe. Flexing the right ankle
3. Relaxing my shoulders to swing my arms naturally
4. Looking right and left while walking
5. Controlling the hyperextended knee
6. Controlling the toe from kicking out
PT session with Thomas
Thomas Minton, my Physical Therapist has helped me work on these specific issues. He has been helping me for seven years. Finally, I feel more natural walking most of the time. My knee flexes in coordination with my ankle and foot. I can look right and left and talk at the same time.
So, my goals have shifted to focus on improving strength, speed and distance. I use my I-phone heart app to keep track of my progress. Everyday is different. Improvement is slow.
Our driveway is scary. It’s gravel and steep. Going down and up is challenging. I have fallen walking down. Sometimes the gravel slips and slides underfoot. It's easy to get overbalanced when I am not paying attention. I prefer to wait for Donnie to hold onto going down, but occasionally I’ll be audacious and start going down alone. But, I concentrate on each step. “Thomas said to go slow and take small steps. Do the zigzag. This feels okay so far but the slippery area is approaching. Slow down more; take smaller steps. Good, I hear Donnie coming. I’ll just wait here.”
A cool morning walk
Today the temperature was perfect for a morning walk. There was a slight breeze and not hot yet. When I get hot, the nerves literally melt. My leg muscles feel exhausted, heavy and limp.
I wanted to see how I would feel taking a longer morning walk. We had already done hot yoga and then I did a strength workout. When we started I was dubious about meeting my goal. I thought, “Legs, I’m sorry about the workout. Did we do too much? You are already complaining. Well, let's see what you can do.”
The more we walked the better legs seemed to feel. We walked a little beyond where we sometimes turn around. Donnie looked at his watch and said, “We should turn around. Look at the time.”
I did and said, “Let’s go a little bit farther. I’d like to see if I can make two miles.” After we turned around, I talked to legs again. “I’m impressed. You feel okay right now. Maple Swamp hill will be challenging. It's okay if you start complaining. I expect that so I'll help by concentrating."
Satisfied rest and water on front porch
That’s when I double down talking to legs. “You’re doing great! I have only noticed a few toe taps, right leg. Left leg, stay strong. This hill is always tough but it’s all downhill after we reach the crest in just a few more strides. We’ll stop for water when we get to the top. It's not much farther and then the big push up the driveway. Don't make Donnie get the car for a rescue. We can do this!”
My distance is slowly increasing. Confidence in my stride is coming back. I know I can walk by myself, where it’s safe. How far I can go at one time is evolving. What I like is feeling empowered and strong each time I beat my distance goal. I like knowing I can handle myself when traveling. And, I like feeling the strength training kicking in. I’ll keep checking my distance average on the I-phone app. I won’t set a limit on what’s possible. Who knows what the next milestone will be? I’m open to all possibilities.
Fenway Park Baseball game Vacations give me permission to play even though I shouldn't need permission. I work hard trying to sustain...
