Embrace the Journey, A Curated Blog on MS: Stay on Tra

With daughter Liz at Notre Dame

I love to travel but always worry about losing strength and flexibility while we play on our trip. You might say I’m  paranoid about maintaining strength and flexibility. Why? MS, of course. This disease weakens muscles and stiffens joints without regular work. I notice deterioration even when I let up for a week. Granted some of the problem is age, but lack of movement for long periods is bad for me. 

I know that MS is a problem for me, but we are all aging. Donnie works out with me doing yoga and weight work at the gym. While he may not be as avid on setting goals, he has commented on his need to stay on track. Traveling always presents some interesting problems, especially with long trips.

Embrace the Journey, A Curated Blog: The Grand Experiment

 

Traveling will be easy!

No meds, no problem! Right? After 25 years of taking meds, it feels really strange. The purpose of the meds is to slow progression of the disease and reduce the symptoms. 

 

Every six months I get blood tests. My lymphocyte count had been too low so he cut the dosage in half. A year later, the most recent blood work indicated that cutting the dosage didn't help. I said, “What do we do now?”

“I want you to stop taking the drug, today. Let’s do a six month holiday from the meds. Before you come back for your next visit, do an MRI and another blood work-up. We’ll discuss what to do from that point. Also, new drugs are going to be available next year that reportedly have less impact on the immune system.”

Embrace the Journey, A curated Blog: Celebrate the Effort

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.”

Embrace the Journey: Acupuncture Works

Anticipating the Facial Rejuvenation Treatment

Have you tried acupuncture? I’ve written about it before because I’ve had good results. It’s not scary. I admit to being concerned about the needles that first time, but they don’t hurt. In fact after the initial prick, it's nothing. It’s not at all like taking a shot.

Acupuncture works for me, but I can’t say specifically why. I can tell when I need another treatment. I can also state several specific improvements in daily life because of it. Does that make sense?

Embrace the Journey: Find a "Clean-Up Man"

Donnie, my "Helper"

I call him Caregiver. He says he is Helper. I like and need all he does for me. He's easy and he loves to work and  be helpful.

He likes to eat and I enjoy cooking. I do a lot of food preparation so I appreciate everything he does in the kitchen. We eat mostly at home but enjoy going out for a treat. 

Bone broth and vegetable juices are staples in our refrigerator. He has bone broth with me but not the juice. Making and/or preserving broth and juice take time and lots of standing. 

Embrace the Journey: Music Helps Me

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: 

• Improvement in movement and coordination

• Improvement in memory

• Reduction of anxiety 

• Reduction of stress 

• Improvement of digestion

• Improvement of speech and communication

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!

Embrace Your Journey: There will be stress

Grandsons back home in Paris

I now have hard, concrete evidence on how stress exacerbates my MS symptoms. I use to be flippant about its effects but I have done an about face since having an onslaught of stress this past month. Here is the itemized list of contributors to my heightened stress levels:

 

1) Sending my grandsons, daughter Liz and Philippe back home to Paris for what will be a difficult fall for them. To say I’m a bit worried is an understatement. 

2) My feet hurt! I learned that my foot has widened and the design of the shoe I was using was wrong for all of my walking issues. Physical Therapist, Thomas told me who to see and what to look for in replacements. The timing for doing this project was stressful.

Aunt Kay

3) My last aunt died suddenly. She was a favorite. We went to the funeral in Cincinnati seeing all the cousins and family. 

4) We took our first long driving trip in the EV Tesla. We didn’t know how to plan the trip for charging stops and it was almost a disaster! 

5) My twice yearly neurologist appointment in Raleigh was on tap for the next week. Still stressful even though I know what to expect. 

What are the concrete things I noticed as things started to unravel?

Physically, my walking felt bad and was bad. My pace was slower by two to three minutes per mile. I didn’t feel stable. Donnie noticed and held onto my hand more during our walk. Most days, my feet hurt from beginning to end of the walk. Donnie said it seemed like my balance was way off.

Cognitively, I was in a fog. I went through my weekly schedule on automatic pilot with my mind prioritizing my feet. Getting new shoes with more toe space ruled. Hence, I was totally caught off guard shopping for new shoes when I took the call from Sarah’s office.

After funeral lunch - Brad and Michelle hosting

Hi, it’s Holly. Is everything okay? You still have time to get here if you want to come.

Oh no! I totally forgot about my appointment with Sarah! I’m shopping for new walking shoes and can’t leave. Can I call you back and reschedule? I guess we’ll get charged for two appointments.

Sorry, but yes, call me back and we’ll get you set up.

Thanks. I really need Sarah’s treatment but I’m getting this done so, I’ll call you back.

 

The psychological issues are more challenging to identify. Aunt Kay’s death being so sudden hit me hard. She was a favorite, and was the last aunt of the Horak clan.

Out of normal routine

After we knew when we needed to leave for Cincinnati, time did funny things in my mind. It seemed to be in warp speed, yet processing information slowed down. I had trouble focusing. I resorted to compartmentalizing. Before leaving for Cincinnati on Sunday, I had to prepare for my Toastmaster duties fro the meeting on Friday following our return on Tuesday. Some meetings fall into place neatly. This one didn’t.

Bad temper and ill humor were ruling my life. I felt angry, combative and argumentative. I found myself taking out my stress on my closest friends and family. This is what I do in my dark zone. I lash out and blame others. I was not being a nice person. 

Back home, back to routine

Luckily, the consequences this time were minimal. I only took one fall ending with a bruise. I only missed one appointment that has been made up and seem to be in fair standing with friends. Donnie responds good to food and I enjoy cooking, so that serves us both well. 

Stress happens. Next time, I hope I will notice the triggers and indicators quicker. Everybody has different stressors and different indicators. I recognize the physical ones easily but the cognitive and psychological are more challenging.

Embrace the Journey: Strength Makes a Difference

We have a great place to walk

I have a lesson with Trainer Jeanne every Tuesday morning. This is typical of how we begin:

Hey Jeanne! I’m already warmed up. We got our five miles in before coming. I like to get my walking in before it gets hot. Afternoon walks are laborious! What are we doing today?

We’re going to start with the curtsy squat.

Good. I must need it because it makes me fatigued in the hips.

Mountain climber is next. Where is that padded box? 

Thomas thinks this is a great exercise for me. When I showed this to him yesterday, he suggested that I go much slower and get full extension with my legs. He also said to up-lift, un glue? What’s that term you use? Anyway, it’s much harder than moving fast!

Trainer Jeanne 

I’ve had two other trainers before Jeanne, Lacey and Evan. They were both very good. Each one had a different style, but they both worked with me at my very beginner level. Strength and walking both improved. That was my goal.

Covid 19 paused indefinitely going to the gym. Not to be undone, I set up a modified gym at home with mats, bands and small weights. I exercised everyday using the lessons I had saved from Lacy and Evan. While I probably maintained strength, I didn't improve anything. Then I fell, fractured my hip and stopped gym work.  

By the time I was healed things, had started opening again. We stayed with Gold's Gym. They assigned Jeanne to be my trainer.  We were a good match. She’s closer to my age and has tremendous experience and knowledge from other forms of exercise like Thai-Chi, boxing, and yoga. I particularly like the way she will notice a problem I have with doing an exercise. Right there on the spot, she’ll either modify what I'm doing or devise a new exercise to address it.

One of many exercises for core and abs

My current goals are to walk farther and faster with more confidence. She gives me a full hour of exercises for all body parts including the core. The weight machines and free weights are all in the big, main room. 

I can see and feel improvement as I go up in weight. Jeanne's good at picking a good weight for me then showing me how to do anything new. She usually repeats an exercise several weeks running, sometimes changing the number of repetitions or amount of weight. Some combinations work on strength building and others work on endurance.

There’s another big, open room used for group training, that we go into occasionally. 

High Alert! She's got something hard for me in there. 

Balance is needed for the hurdles

Wonder what? Good, she’s ignoring the stairs. That's scary racing (ha-ha!) up and down those steep stairs. But, there are rails, and I hold on to them. 

Oh no, she’s going for the hurdles. It’s been a while since we’ve done that. Umm, scary but good. I’ll really concentrate and think positive. Done! I’m beginning to feel more confident and Jeanne said I’m smoother. I believe it’s transferring to walking. 

I’ve written in a blog post about how aging weakens muscles. MS surreptitiously robs muscles of strength so I have double jeopardy working. I’ve also noticed that injuries heal, but the healing takes time and I wonder if we really get back to where we started before the setback. That being said, I understand I must keep walking and strength training. Starting over is daunting as well as mentally and physically challenging.

The multi-movement (Robot) machine is a favorite 

My best bet is to continue what’s working for me: yoga for meditation and stretching; gym and strength training for walking without fatigue or pain; therapies to support everything.  I’m beginning to feel my stride. That’s  my “happy place”.

Blog posts that speak about strength building with trainers:  

https://judymanagesms.blogspot.com/2018/12/embrace-your-destiny-hard-work-pays-off.html  

https://judymanagesms.blogspot.com/2022/05/embrace-journey-youve-got-to-want-it.html