Embrace the Journey: This is Your Life

Connie, Penni and me ending a special weekend

This is your life, Judy Groff. See, it’s not so bad! You do fun stuff and look fairly independent. Looks like you’ve embraced MS. We acknowledge that you have noticeable issues but, you are functioning at a high level. I’m proud of you.

Yeah, but it’s taken over twenty years to figure out how best to keep functioning well. Just when I think I’ve got things where I want them, wham, I fall or something happens to throw me back. Who are you anyway? Why am I even talking to you?

Carrying on, trying to be independent

Good question! I’m the you that lurks deep in your mind and reminds you where you came from and who you are. It’s my job to give you tough love talks when you get down on yourself. You were a mess in the beginning.You felt bad and moved poorly. We had some serious talks back then.

Those early years were hard. Actually, learning to fill the syringe and give myself the shot got me going. That gave me control so I felt empowered. My turnaround started there. I need to feel in control and independent.

You are in a good place now. What do you think happened? You tried a lot of different things and never gave up trying. 

Meditation using singing bowl

I always thought I could improve my walking. I remember getting very frustrated and angry. I’d try something then vigilantly track improvement in how I moved or felt. I experimented with alternative therapies like meditation, massage, yoga, and gym exercise. I had fun with bike riding, until I had a bad fall. It must have been you I would talk to. You always remind me that I’m the one with the power to fix me. 

What fears and hopes were driving you during that time? 

I worried most about losing ability to exercise at all. I couldn’t run anymore and swimming had to be different. Tennis and biking required too much balance and coordination. Almost everything I did had to be modified. Walking has been the one exercise I am doing better now than in the beginning.

Hot yoga in our bathroom studio

What happened to prompt this change?

Several things started coming together. Bikram Hot Yoga was the catalyst that introduced me to new therapies like acupuncture and massage. 

Then I got adventurous and tried “juicing” and bone broth. I went all in at the gym and secured a physical trainer. To challenge my mind, I joined Toastmasters, started taking piano lessons and learning French on Duolingo. 

I started feeling better physically and had more energy. Slowly my walking has improved. With the guidance of my Physical Therapist, I am learning now to walk again (second go round).

Doing Job #1 prepares me to have fun

Sounds to me like you invest a lot in yourself. Do you ever feel guilty?

I do not. Taking care of me is Job #1. Mama had a plaque hanging in the  kitchen that said, “When Mama’s not happy, nobody’s happy.” When I’m tired or feel out of sorts, I’m grumpy. Family and friends want me to feel good. In fact, my favorite quote is, “When you look good, you feel good. When you feel good, you do good.” Yes, I give myself permission to invest in me.  

This is my life! I’m beginning to write the memoir about my journey. The blog posts will be incorporated. This is a story about my struggles and joys. It’s a story about making the best possible life with life as I know it. And finally, it about all the things I can still do albeit with help along the way. 

Readers, you inspire me and keep me going. Give me some feedback. Thank-you.

Embrace the Journey: Take more Lessons

Caribbean Cruise - St. Kitts

Mind to Body 

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.

Wide, straight stretch of track

Mind
Those were really bad issues, but I still don’t like it. You wouldn’t relax. Why can’t you relax and stay that way?. I tried to do my part keeping you focused using a mantra I thought you liked. You persisted in tripping me up. When we got home, I expected you to improve. You didn’t, so we are going back to the experts. This is a courtesy notice. We are going back to “walking school”.

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. 

Working out on the ship

Those falls we took several times in early 2023 created mind issues.  Fear got into our psyche. That’s the enemy. It makes us hesitant, cautious, and generally unstable. Also, we have  all gotten a bit lazy. Yes, it’s hard work but the alternative is unthinkable.

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.

Sunset and cocktails 

Mind
Your mechanics are good. Do you realize that walking requires connected movement of every bone and joint from the feet and ankle, up through the lower leg and knee to the hip and then up through the trunk and shoulders. Feet, you need arms to relax to swing and move the shoulders. That’s what causes toes to kick up. Think of a marionette stick figure with me pulling your strings to get the motion started. When it works, it flows easily. Right?

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?

Relaxing time before dinner

Body
Right!

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.

  

Embrace the Journey: Is it MS or Aging?

S

Walking independently - before

I'm frustrated so I call out MS

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.

Embrace the Journey: Sickness Set-Back

Not sick here!

How can I completely lose a week? Did I wake up from a bad dream? Nothing happened. I cancelled everything. I had no ambition to do anything. It was an effort to force myself out for a short walk. Cooking? Not interested in eating, so why would I cook? Standing to “heat-up” a prepared dish is too much. Christmas decorations are still up? They can wait. Nothing bothers me. 

Seems like this new year started with the bug brigade in charge. The stomach bug went through our house. I heard about other bugs, especially respiratory ones bothering friends. It was a nasty end of year.

Toastmasters Betty and Jeanne

Stomach bug, you have beaten me down. I thought you were gone, but you slipped back. I know what you did. You waited till I was tired and weak. You tried to shift the blame onto MS, didn’t you? Maybe you’re a “wanna-be” lingering disease like Long Covid, lurking, lurking, lurking. You think you are winning? Ha! Not a chance. Not going to happen! 

For a moment,  I did let self pity creep in. I thought maybe you did rule earlier today. Then I rallied. Your bullying didn’t work. My good friend, Toastmaster presented an opportunity I couldn't resist. I was the Toastmaster for this first Friday after the holiday break. The only Speaker had to cancel. By Thursday, we had less than ten members coming.

Yea, I thought you would surely cancel the meeting given all the issues surfacing early this week. Usually, you think of Toastmasters as a “responsibility”. What gives? 

Toastmaster Zoom Meeting

Stomach bug, you’re just like MS. You think you can dictate results. You think I’ll let self pity and negativity in. You think I’ll become easy to manipulate and disinterested in life if you hang around long enough. You are so wrong! Ask MS if I have conceded! You can only rule briefly. Why? Because you can’t  begin to get into my mind. My mind and willpower will overpower anything you can throw at me.

Actually, I want to know why all of a sudden Toastmasters isn’t just a responsibility. What’s so special about them? 

What you don’t understand is they are part of my support team. They support me and I support them. This week I am Toastmaster of the week. That means I am responsible. It’s a challenge and I love a challenge. Starting this new year with a strong meeting is a must do.

You are stubborn! Why didn’t you just call it off due to sickness. Throw in the towel. I was a perfect excuse.

Selfie with Wendy at the Christmas Parade

You set a nice trap, but I won’t take the bait. Actually, you and your cohorts running around sickening people challenged me to be creative and have fun doing it. As it turns out, our group will be small, and in my plan, small is GOOD. Toastmasters are strong and will rise to the occasion. 

We are going to play a game. The theme is “Turn the Page”. I’ve asked each person coming to weave a tale about things left behind and visions for the new year. It’s an exercise in team building, speech crafting, and leadership. I’m looking forward to it.

Stomach bug, you slowed me down. You made me feel really yucky and weak. You tried your best to break my spirit.  I lost a week of good stuff! Therapy sessions, fun with family, exercise, and hot yoga had to wait. 

You won’t win. I’ve got your number. You will not get a negative toehold in my mind.

Grandson Loleh 

On a serious note, chronic illness and pain are debilitating on both body and mind. Having several strong support groups to keep the mind focused on others and positive things is important. There will be more set-backs, but the human spirit is resilient.

Family and friends carry us through the hard times. Let's all Turn the Page to a happy and productive New Year!

 

Embrace the Journey: Find a Role Model

Jeanne speaking at Toastmasters

She’s small, spunky, sassy, and super smart. She’s my role model. I want to be as fit and vibrant as her in another ten years when I’m in my eighties. No grass grows under her feet. She travels the world, takes on enormous projects, and still takes time out for a glass of wine with her husband every afternoon. Wow. I’m impressed.

Her name is Jeanne Resen. I am fortunate to know her through Toastmasters. I also see her at Gold’s Gym where I exercise. I caught her running up and down on the exercise stairs. I also use them for training, so I asked her if she was training for something. 

Embrace the Journey: Enjoy the Attention

Picture for the Program

The Induction Ceremony for the National 4-H Hall of Fame was special. My sister Penni, Donnie, and several colleagues from NC Cooperative Extension who nominated me attended with me. I learned about the award in March, 2022. The Hall of Fame is an on-line repository of information about each inductee for the past twenty years.  

My letter contained specific instructions and deadline for "homework". I was to submit a laureate picture, my motto, full biography, short biography and several other items. Basically my life story in brief, and pictures. I don't do pictures well now! 

Later I learned I would be doing a three minute acceptance speech. This was exciting and challenging. 

Embrace the Journey: Reinvent Yourself

At the Peace Center 

Confession. I like being pampered, waited on and catered to. Why? I have more time to exercise my brain, read, do Duolingo or puzzles. I call it “Therapy”. I am unashamedly spoiled and I love it! To be honest, Donnie likes “spoiling” me. He told me recently that it suits him. We have a nice fit! He gives and I take!

He had to have knee replacement surgery this summer. The upheaval in roles challenged both of us. Stressful only begins to describe how we felt. It's tough doing things that are hard. He would do as much as possible then say, “I’m done. I’ve got to sit down and put ice on my knee.”

Since I’ve been working on being more independent, I can say, ”No worries, I’ve got this!” “This” could be any of the many tasks he typically does around the house from dishes to laundry or tending to Sootie the cat. Mowing the big yard had to wait.

Embrace the Journey: Enjoy Yourself

Express Train was great

I'm enjoying myself reliving our exile in Italy. This post captures our last touring visits to Rome.

Eight days of exile in Italy passed quickly. We had traveled around Civitaveccia, Maori and the Amalfi Coast. For the duration till we could go home, we were staying at the Hilton at Rome Fuimicino Airport. On this Sunday, day eight of our exile in Italy, I was still testing Positive but Donnie was Negative.

The Rome airport was conveniently located so we could do day trips to Rome. There was a thirty minute non-stop Express train advertised at the airport. For our first day trip however, we took a van because it let us off in a better place for seeing sites we wanted to see. 

At the Rome Coliseum

We got to Rome early and got off close to the Coliseum. There were tourists everywhere and it was already hot. I knew two thing immediately. First we had to lose the crowds and second, we wouldn’t see much just walking.

The Hop-On Bus was easy and  outside

“Donnie, let’s keep an eye out for one of the ‘hop-on,’ type red bus. Look at that line going to the Coliseum. Wonder if they’re waiting to buy tickets or to go in? I can see all I need from right here. Let’s take some pictures and call it ‘good’. Besides, we toured a nice coliseum in Arles and learned all about the gladiators and other spectacles.”

Water stations were all over Rome

We headed in the opposite direction from the crowd toward a park. It was up a hill and looked cool and inviting. We spied what looked like a water pump. “Donnie, let’s fill up my water bottle. It’s already empty.” Donnie was skeptical.

While we were talking, a young man stopped and got a drink from the spigot. So, I asked him if it was safe to drink. He said he uses it everyday and that we would find similar water holes all around Rome. Then he pointed us in the right direction to start our walking tour.

No handrails!

We enjoy doing our own thing. I hate guided tours where you stand politely till the guide finishes the spiel and answers questions. We miss details but we wouldn’t remember them anyway. Walking the cobblestone streets and seeing the buildings told us a lot about Roman life. They walked everywhere and in summer, and it would have been hot, and uphill. 

We saw a lot of interesting architecture, landscaping, statues and gardens. Much of Rome seemed to be under construction. We found several churches and another watering spot.

We were hungry so we hopped off at what looked like a high end retail area. We walked around checking several possibilities before going back to one on a busy corner. I think it was “fast food”, Italian style. There was a refrigerated display case showcasing different sandwiches, salads and deserts. After answering our questions and ordering, we sat down and wait to be served. This restaurant seemed very typical of others we had tried. It was small, old and quaint, with friendly and efficient staff.  The service was quick and the dining experience felt leisurely and relaxed.

Loved the architecture!

Our day trip to Rome was a huge success. From our walking tour, we got a sense of ancient Rome; from the hop-on bus, we could see the big picture of ancient Rome blended with the modern city. We rode the Express train back to Rome Fuimicino Airport. It was nice to sit back and watch the scenery. Back at the airport, we had more Covid Testing work to do. 

At dinner, we relaxed and enjoyed ourselves. Our self testing showed that we both tested Negative! Let the plan to get home begin!

Embrace the Journey: Get a Grip

Home Base

“Okay, so we are still testing Positive. Well, at least we have two nights in Rome reserved. Wish we had gotten three. The Airport Hilton will be a central home base till we test Negative.”

One problem was fixed but the Covid problem lingered. Testing Positive hung over us like a heavy dark cloud. We became intimate friends with the airport during our five night stay at Hilton. One by one, we found the places we needed: rental car return, the train station, the Uber pick-up spot, food and restrooms accessible without doing security, a pharmacy and most important, the make-shift Covid testing site.

Lobby was usually packed with travelers

We arrived on Friday and the beginning of a sold out situation at the hotel. In addition to a conference, vacationers on religious holiday, a wedding party and the beginning of summer. People without rooms were trying to get a room. We had reservations for two nights but needed more. Our room wasn’t ready, but we were check-in and luggage stored.

New problem was getting more nights here. Donnie said, “Don’t worry. I’ll call Ramona to get her on it and I’ll keep on it as well. Let’s get lunch and head to the airport.”

Mall was a disappointment

Our first day was like a ‘broken play” in sports. The airport wasn’t close to anything. Transportation was either train, taxi, or Uber. I said, “Donnie, why don’t we check out the mall Ramona said is close. I don’t need anything, but it might be interesting to see what stores an upscale Italian mall has. You can practice using Uber.”

After finding the Uber pick-up place, the Uber ride itself was nice. We both thought Uber driver was taking us on a wild goose chase through literally nothing of note. We had envisioned an interesting mall with boutiques, restaurants and windows dressed with intriguing fashions and merchandise. What we got was a long ride ending at a strip mall identical to any in the states. 

It was already hot outside. We were disappointed and didn’t want to waste anymore time or money. Almost in unison we said, “This is not what we were looking for. Sorry, please take us back to the Hilton.” Uber driver wasn’t happy. 

Express Train

We spent the afternoon researching our trips to Rome. We had at least two days to tour there. Our objectives were to learn how to ride the train; see Vatican City; walk around to get the feel of this ancient city. We did our research, on foot in the airport.

Big signs promoting the Express Train going to Rome in thirty minutes were everywhere. The train station itself, was harder to find. 

Terminal A 

We started inTerminal A where our outside path led us. Inside, we looked around for train signs. There was nothing. “Wonder how we find the station. Surely there’s a way to get there without going through security. There’s an information place, let’s ask them.”

Of course, we were in the wrong terminal and on the wrong floor. We got directions and started walking. After many twists, walking sidewalks,  and different corridor tubes, we finally saw train station signs. Once in the doors, the ticket counter was easy to locate. It wasn’t a busy time, so the clerk patiently answered all our questions. 

Got a grip on mass transit

We were getting a grip on the airport. We noted our path mentally. We would get an early start on seeing Rome. Normally, our travel agent Ramona would take care of  everything. We learned that we could fend for ourselves and have fun doing it. We were slow but steady and gaining confidence. We would do Rome much like we did Civitaveccia and the Amalfi Coast. We got our daily mental exercise to boot! 

Embrace The Journey: Don't Get Stuck

First night out

I have posted several blogs about our dilemma and what proved to be a delightful “land cruise” on the Amalfi Coast. The experience was both memorable and stressful. 

We started in Civitaveccia, the port city, several days. We got lodging which was a valuable commodity at that time. We think we hit the beginning of a holiday in Italy. Securing lodging on a day to day basis was stressful. We tried to make the most of the nights we had in any one place.