Embrace Your Destiny: Just Let Go!

 

My Meditation Place

Ohmmmmm, ohmmmmmm, ohmmm. My singing bowl lulls me into a peaceful meditative state. It feels good to let go, really let go. This is a space where there’s no right or wrong, no judgement, no worries. It’s just an inward focused peace.

 

I started meditating as a mindful healing practice when we lived at North Topsail Beach. I had read about meditation as a good tool to manage symptoms of Multiple Sclerosis. Needing some guidance, I started looking. I didn’t know what I was looking for but when I saw it, I knew. On Wall Street in Asheville, I saw a window display with Singing Bowls in a store with an India motif. I said to Donnie, “Let’s go in and learn about these bowls.”

Embrace Your Destiny: What Am I Doing?

 

Memoir Group Zoom Meeting

"Let’s see. This piece is going to be about memoir group. Our zoom meeting is tomorrow and I can’t go empty handed.Their feedback keeps me going.”

I have this conversation with myself often because I get confused. My purpose for doing memoir and blogging is to tell my Multiple Sclerosis story.

Embrace Your Destiny: What Is Your Goal?

I needed some inspiration to help me zero in on this blog post. My reader  blog comments did the trick. Inspiration washed over me! Thank you for taking time to comment.

What I strive for everyday is to feel good, happy and motivated. Sometimes before breakfast and hot yoga, I notice aches, pains and worries. Getting locked into my daily routine of yoga, weight work, piano practice, and healthy eating fixes all my issues. 

During this pandemic, it’s more important than ever to remain positive.  A special edition on Multiple Sclerosis of Brain and Life Magazine came in the mail recently. It was packed full of information about the disease that validated everything I do. Furthermore, since I have the Primary Progressive type of MS, I should be slowly deteriorating. My husband Donnie agrees with me that I’m not. i feel better, walk better, have more energy and can do more than when I started this journey twenty years ago.

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: Keep Your Eye on the Prize

Physical Therapy

My prize has always been walking. When I could no longer walk with ease without falling, that's when I had to find out what was wrong. First thing my neurologist had me doing after being diagnosed with Multiple Sclerosis was to see a physical therapist. That was fourteen years ago. At that time, my right ankle seemed to be frozen. My joints were creaky and out of alignment. My balance was really bad. Walking on grass was out of the question. 

Embrace Your Destiny: Anticipate Success With Neurologist

Check-in at Durham Office

I always look forward with anticipation to the twice yearly visits with my Neurologist, Dr. Scagnelli with Raleigh Neurology. I've been seeing Dr. Scagnelli for a year since my long time doctor, Dr. Gregory Bertics semi-retired. Dr. Scagnelli and I are still getting acquainted but overall, I'm pleased with him and hopefully he is with me. Much to my surprise and delight, I discovered that he has a very nice office in Durham. This is 30 minute closer on a long 4 1/2 hour road trip to Raleigh.

I usually have high expectations when I go for my check-up. I usually think I am doing good overall. What I really want though is unsolicited confirmation from him. The changes I feel in walking, strength, balance and general ability is slow to recognize. Family and friends who see me regularly rarely comment about any improvement they see. I'm sure changes in gait in particular are so slight they probably aren't noticeable. I really work hard for and appreciate good feedback from anybody, but I live for the day the doctor tells me, "You are doing great!"

Embrace Your Destiny; Find Your Voice

Join Toastmasters 

I've been a member of Toastmaster International for five years.  There are several clubs in the Hendersonville area, but I chose FourSeasons Toastmasters. We meet at Lake Point Landing retirement community in their general assembly room downstairs in the main building. The location and 8:00 am meeting time works well for me.

Embrace Your Destiny: Enjoy the Improvements

A new stretch 

Week by week, I'm getting stronger. I see improvement in leg strength almost daily. How do I know? My most immediate example is what else, just walking. 

I had done hot yoga followed by an hour workout at the gym. I had worked on leg strength that day. Normally, after doing both activities, my legs feel heavy and tired.They did feel a bit tired, but my son-in-law, Philippe invited me to take a walk with him. I love walking and it was a beautiful day. Of course, I said yes. We walked on a gravel road that was very rough in places. It had holes and uneven loose gravel and was hilly. We went to the top of a hill then turned around to go home. Even on the return hike, I had no problem with balance or leg motion. My right foot rarely toe-tapped and I didn't need to hold Philippe's arm very often. That's progress!

Embrace Your Destiny: Little Bit by Little Bit

Change happens little bit by little bit. It's easy to get discouraged with what seems to be lack of progress, with anything we do. Spasticity slows me down doing anything. For example, I have noticed very slow improvement in my piano playing. I've been taking lessons and practicing everyday for three and a half years. Practice is the key for me.  Everyday and over a L...O...N.NNNNNG period of time, I can finally see some small, but significant changes. I see the same thing in hot yoga practice, speaking at Toastmasters, walking, and building strength.

Embrace Your Destiny: Take on Piano Lessons

Starting my lesson with Annett

My destiny has taken a big right turn for the better during the past three years. I consider physical and other therapies to be my work. This work is not laborious or tedious. It's actually stimulating and fun to do, but it takes time. It's worth it! I believe that I am 90% better now than I was at the beginning of the journey 17 years ago. Why, you would ask? My evidence is this:

My walking has improved to become less spastic and more fluid and strong.
Pain and stiffness in the hips and leg joints is minimal and mostly just after sitting.
I am quicker doing routine activities around the house.
I have learned to handle stress through breathing.
I have energy again.

I believe that all the alternative therapies I do are working together to support my immune system, my neuromuscular system, my digestive system, skeletal system, and mental systems. For example, I have been taking piano lessons for three years. When I started, I discovered that my fingers were as spastic as my legs and arms. I had no idea the spasticity extended into the hands. I should have figured that out because my handwriting had really deteriorated significantly.  The regular, daily practice of piano is slowly improving this area of spasticity. I believe the physical therapy work I do has helped looses the shoulders which helps keep the hands soft and pliable. I am grateful that I am able to do piano therapy. My neurologist said it is recommended as a therapy, but he had another patient who didn't have enough strength in her fingers to work the piano keys.

My piano teacher, Annett Hudson, patiently works with me to identify problems and how to correct them. Music is the tool. We work on technique more than anything else now. Each piece I work on requires something a bit different. Some of the specific, fundamental things she reminds me of every week are:

• Keeping my fingers moved up into the black notes
• Relaxing my hands and keeping a dome shape when playing
• Relaxing my arms and using them to help press the finger on the key

The music pieces are fun to work on and challenging. I'm convinced that playing the piano works my brain in a way nothing else does. It's also a great stress reducer. Annett keeps talking about doing a recital next Spring. The jury is still out on that challenge. I've got a long way to go before feeling ready to perform!

Embrace Your Destiny: Knowledge is Power

Speaking at Toastmasters

I was looking forward to retiring at 55 being healthy, active, and able to do most anything I wanted to do. When I started falling, losing my balance, dragging my right foot and stumbling a lot, I got concerned. What a surprise to be diagnosed with MS at age 50! I argued with my doctor that I was just too old for that disease. Well, after I calmed down and digested the facts he presented, I concluded that Multiple Sclerosis is not good. On the other hand he said it can be managed by me. Okay, I can do that. I set my goal to go after this disease with all the knowledge and positive will power I could muster and see what happens. I knew I could count on my family, my doctor, my colleagues at work and my church family as a strong support system. The rest was up to me.

It's been seventeen years now since I was diagnosed. In the beginning fatigue, pain, stiffness and spasticity and headaches were the norm. My walking was limited to short walks with very jerky motion. Now, I have great energy and vitality. My walking is almost a regular gait. I have eliminated my headache medicine and another medicine for movement. I would say I feel great 98% of the time. So what's the change? That's what this blog is about. 

Over 17 years, I've learned a lot about the disease and about me. My job now is managing me. I embrace the challenge of trying things that are safe, recommended for neurological diseases and especially MS, and fun. I will share what I've learned over time that has worked for me. I will also share my current adventures into some of the new alternative therapies I use for managing myself. Please join me and share your comments, and questions. The destiny begins with drug therapy which is the first big hurdle and decision.