Embrace Your Destiny: You've Got to Want IT

I wanted IT (normal walking) too much. I did too much. Sure it hurts, but it's suppose too. Listening to my body and my doctor is challenging for me. But, my body brought me to my knees. I acknowledge that I was wrong. The body can humble you better than anything or anybody. When the body says “Enough” that’s pretty much it, at least for me. I was stopped in my tracks. 

Walker, walker, I didn’t plan to bring you back to life so quickly.

Walker, walker, I am keeping you close again, 

You are my best friend again.

I want to leave you sitting, but that’s not safe.

I’d like to ignore the pain and move on strongly. 

But, that's stupid. I’ll keep you close until I’m sure I am stable again.

Embrace Your Destiny: Ode to Walker

Walker, Walker, I love you Walker.

You give me freedom,

You give me joy and power to walk.

When a step hurts, you support and comfort.

You are steadfast, always to the rescue.

Walker, Walker, you are ever humble,

Sturdy, strong and uncomplaining.

You go into mud. You navigate gravel.

Ka-plunk, ka-plunk, plop-plop,, schhhhh,schhhhhhh

You glide on the hardwood like a laser.

Walker, Walker, I won’t need you much longer.

Everyday, I exercises in my chair. building strength, flexibility.

Everyday I walk, squat, bend and extend that bum leg

You stay close, but out of the way.

You nurture my determination and independence.

Embrace Your Destiny: Find New Normal

Life happens. When life goes sideways like with the Covid 19 Pandemic we are experiencing, adjustments have to be made. Even my cat Sootie is having to adjust to a change in his schedule. He is very distressed. He doesn't like change. I also recognize that I’m feeling stress from all the changes. Today, I am reaffirming just how very critical hot yoga, gym work, and routine are to me. The closures, shortages, and even having to learn new skills increases stress  exponentially.

Sootie meows, and gets underfoot unless he is snoozing. I adjust by cooking. I tried two new recipes and used up all my freezer storage containers storing soup, stews, and other dishes.

Each night I am exhausted. My soaking tub bath at the end of the day is a treat for my muscles and mind.

Embrace Your Destiny: Manage Yourself

In the Arizona desert, October 2019

January  marks twenty years I have been managing Multiple Sclerosis. The first fourteen years I was adjusting to this new me. I learned what to expect from the disease physically, mentally, emotionally and physiologically. It’s a very complex disease. I have the Primary Progressive type of MS.

My biggest issues have always been physical with spasticity, balance and irregular gait being most troublesome. The mental issues are not as obvious. Reflecting back, I had them. I had plenty of physiological issues too. All the symptoms are insidious in that they creep up from nowhere. For example, in the past three years, I noticed that my core has been slowly going to mush.

Toastmasters is part of my cognitive therapy. I’ve competed in the International Speech Contest several times. After much deliberation I decided to compete again. I have something to say about living with and managing a chronic illness. I can use this platform to communicate that you can manage MS and enjoy doing it. In the past five years, slowly but surely, I am improving. First I had to get out of my comfort zone. I tried new therapies and I continued to work hard. 

Embrace the Journey: Find Your Elixer

Summer 2019 with Adi Westerman

Five years ago, in 2014, I felt like the Multiple Sclerosis was winning. From the beginning in 2000, "good" was measured as how well I was walking. I refused to accept the notion of a steady decline. The type of MS I have (Primary Progressive) projects a slow steady decline with age.

Spasticity was spreading all over my body. I  had a limp when I walked. My body alignment was yink-yanked. My range of motion in both upper body and lower body was very limited  I had a lot of migraine headaches, achey joints, and falling injuries.

Embrace Your Destiny: Track Your Progress

The aging process plus the diagnosis of Primary Progressive MS is a recipe for change in the wrong direction. According to data I have read, I should be on a slow, steady decline. I refuse to accept that fate. The only way I know to determine if I’m going forward or backward on this journey is to document specific tasks and track them from year to year. Since I do feel and walk better than I did twenty years ago, I think I am going forward. 

Looking back over this past year, I can say these things about my body and how it works better than last year at this time:

• My posture is better especially when I am tired.
• I can get up off the floor with more control and agility.
• I do many yoga postures better.
• I get dressed quicker because I step into my pants with greater ease.
• My walking is more fluid with less limp when I get fatigued.
• Getting in and out of the car is easier and doesn't hurt as much.
• Standing in the kitchen while cooking doesn't make my legs feel fatigued.

Plank for 1 minute

You may wonder, what has contributed to these changes. Good question. From all I have read about MS and other neurological diseases, the mind and body work most effectively when the process is coordinated, consistent, intentional, focused on the right things and done mindfully. Two years ago I noticed that my yoga practice was improving but the strength I needed to get into and hold postures was lacking. That’s when I decided to go back to the gym and get a trainer. I believe the work with my new trainer, Evan Camby has taken my walking and overall strength to a better place. Together, the yoga and strength training have facilitated the specific improvements I listed.

My husband, Donnie says he has noticed a big improvement in my mental acuity. He say I process information faster, which is reflected in smoother, more fluid speech. Mental sharpness has been of concern to me from the beginning. This year I have noticed focus and concentration are improved. I was President of Four Seasons Toastmasters which gave me weekly practice in leading, initiating change, making impromptu speeches, coordinating and giving programs.  I believe I work as hard on this part of my journey as the physical and I believe I see results. Here are the activities I do regularly to work on my mental sharpness:

• Piano lessons and practice everyday.
• Puzzles work everyday; word puzzles, picture puzzles, math puzzles.
• Study and practice French everyday using the Duolingo free app on my phone.
• Attend Toastmasters every week to practice speaking and leadership.
• Plan and execute parties and other events.
• Memoir writing weekly.
• Accept speaking engagements. 

Physiologically, I feel great 90% of the time. Headaches are not a problem now. I may have one once a month and Ibuprofen takes care of it. My energy level is nice so that I can do most everything I plan everyday. I give credit to diet and exercise for these improvements It seems like the more I do, the more I feel like doing.

It’s been a while since I talked about diet. I still drink a 16 ounce juice once a day, courtesy of my juice lady Katie Flannagan and Green Heart Juice. I also make bone broth and consume a half cup of that everyday. The rest of my diet includes lots of vegetables, salads, canned tuna and salmon, beans of all kinds fixed all different ways, smoothie for breakfast, and nuts. I’m monitoring the effect of gluten, cheese and sugar on joint inflammation. Recently I have observed that certain postures in yoga are not fully available the morning after eating gluten and cheese. I am following principles from The Wahl Diet and others that incorporate whole foods and plant based foods.

I look at this journey with MS as a challenge to maintain an  an active lifestyle. This work is my job. I still have lots of things to improve. My goal is to stay healthy, mentally sharp, involved with life and learning and to keep improving. Yes, it takes time, planning and some dedication. That is okay with me. I’ll do whatever it takes as long as I see changes going in a positive direction instead of backward.

Embrace the Journey: Write Your Stories

Me and sister  Penni on fun trip 

Just when I thought I had explored all therapies I might need for managing MS, I found another one. This one is memoir writing.  When I started blogging, I thought the blog would be like doing a memoir. I had no idea there is an entire genre of literature on memoirs! I joined a memoir writing class, got started writing, and love it! I go deeper into my psyche and find stuff I think might be useful to others doing this MS journey.

Embrace Your Destiny: Oh the Places You'll Go

New Year's Eve on the Silhouette

 I love the book by Dr. Seuss Oh, the Places You'll Go! The problem for me is getting the will and courage to take the plunge to go. The fear factor that always gets in the way.

"Places" conjures up destinations. But that's not all the places we can go. Other places we go are personal. These are things like leadership opportunities, relationships, starting a new venture, joining a new group. These personal "places" can be the most challenging of all. The fears, the waiting, the decisions, the setbacks and confusion are still the same.

Recently I've traveled on a cruise to the Eastern Caribbean and islands of the West Indies with Donnie. Then just a short time later I traveled to Laguna Beach for a trip with sister Penni. Both trips to delightful, warm, exotic places. Both also full of challenges.

Embrace Your Destiny: Hard Work Pays Off

Working at the big cable machine

I have been working with a trainer at Gold's Gym for fourteen months. Lacey Blanton worked with me thirteen of those months on my goals of strengthening core,  posture and of course, walking. She has passed me on to another trainer who she says can take me to the next level.
Evan Camboy is my new trainer. In my first session, he began by  analyzing what I can do to determine where we needed to begin. Not surprisingly he identified the same issues of abduction, core strength, and leg strength that Lacey had been concentrating on. 

Embrace Your Destiny: Friends Have Your Back!

Sister Penni invites me most years to a Marketing Executives' Conference or MEC. This group includes around 30 members and spouses with many of the same people coming each year. Penni invites me. I returned mid September from Detroit. My first encounter with the group was in Sedona, Arizona, I had only recently been diagnosed with MS. My walking was jerky but I was excited to join her.  Over the years I've met some truly awesome people and look forward to catching up on their lives. Some have retired and no longer come regularly. New members join with spouses.

I've made lots of friends among both members and spouses. When I go, it feels like they envelop me with their welcoming spirit. They do everything possible to make sure I move places safely. One really neat thing to discover is that there are spouses who are interested in doing hot yoga with me. Matt and I have found Bikram studios in Oklahoma City, Portland and now in Detroit.

Having a yoga buddy in strange places is really good for me. New studios are fun but also a bit daunting to figure out. First of all, getting there is an issue. Luckily this one was in Midtown Detroit and fairly close to the meeting site.

Me and Matt

Matt had my back on the first trip over to Bikram Midtown. I was fumbling around with the Uber app I had used all of one time when Matt joined me. We had agreed to meet at 5:30 am to make the early class. Immediately, Matt took charge of the Uber transport. We got to practice yoga two times. That totally exceeded my expectations.

We stayed at the Marriott Rennasiance. It was huge. After we got back and cleaned up, I had planned to go with the other spouse guests for a walking tour. I either missed the connection time or the meet up place. I was just about to strike out alone when John showed up in the same elevator with me. 

John and I at the Detroit Lions Stadium

John, another spouse friend, had my back the rest of our free time. My legs were fatigued from the hot yoga, but willing to walk. He let me hold on to his arm and made sure I didn't fall. We walked over to the sporting stadiums and got selfies. It was farther than I wanted to walk back so John suggested we take the trolly. The walk to the trolly pick up was doable. The trolly ride itself was a nice experience.

During bus rides and other free time, I took advantage of reconnecting with old friends who go way back to Sedona. I asked Erwin Furukawa an Executive member if he remembered anything about me twelve years ago. I was fishing for any observations about changes in movement, speech, or mental acuity. He offered right off that my speech is much improved from what he remembered early on. He noted that I speak more fluently and get thoughts articulated more quickly now. This opportunity to see people over time allows me to validate the things I'm doing as being worthwhile.

Another new friend and spouse shared with me that she has recently been diagnosed with the Relapsing Remitting form of MS. She was doing awesome. I would never have guessed she has MS. She told me the symptoms that got her to the doctor was that the top of her head was numb, for a couple of months. She mentioned another symptom too, but the numbness in the head was different. She told me she is taking the other oral drug and is doing well on that.

It was during the tour of the Ford Museum on the second day that Penni got called back to Boston to handle an emergency situation. She literally left mid tour. With the busy schedule, her absence didn't register. Well, middle of the night it hit me! Penni isn't here to help me get my boarding pass and transportation back to the airport! I'm on my own to get back home. The only way I got any more sleep was to take some deep breaths and convince myself that my MEC friends would have my back. 

Sure enough, the next morning, Irene the Chair of the Conference took care of all my worries. She asked her Assistant Marie to help me. American Airlines had sent my boarding pass to my email. Marie showed me how to take a photo of the boarding pass and save to my Apple Wallet. I was so relieved!

Evening dinner and games

I certainly missed Penni being with me through the whole trip and especially the last night. My enjoyment of all the activities however, was not impacted. I felt included and cared for. My trip home was uneventful too. I must admit that it took about a week to recover. I loved going to Detroit and learning about how it became great. My total experience was awesome. I continue to remind myself that there are wonderful people who want to be helpful. All I have to do is accept graciously.

  

Embrace Your Destiny: You Have the Power

Donnie and I celebrated our 47th wedding anniversary in August. We enjoy many of the same things and support each other when we have diverging interests. I really think Donnie only started doing hot yoga so he could keep an eye on me. Now, I'm pretty sure he does it as often as he can because he loves it and how good he feels after doing it. 

I was reminded this week that I am responsible for having many more anniversaries. Much as I would like to dish off this responsibility, it can't be done. Nobody else can substitute for me at the gym or at yoga. Nobody else can take on the discomfort from an injury, poor diet, weight gain or anything. Nobody else knows my body like I do. In short, what it boils down to is that if it is to be it's up to me to make my part happen. I have to stay positive, fight off negativity from all directions and just do it. I do have the power and I intend to use it.