Annual Neurological Exam

This week I had an appointment with the neurologist who diagnosed me twenty years ago. (I talk about my diagnosis in the first podcast episode.) It’s really been great having the continuity but three years ago I had to leave my insurance plan. My spouse got a new job and Kaiser wasn’t an option. My 3-year experience with another healthcare system is a long story which I need not go into now. Suffice it to say, I’m thrilled to be back with Kaiser and my neurologist, even though I’m her only DM1 client.

Before she came into the exam room I noticed several new informational posters tacked up to the walls. There were articles and classes promoting different types of exercise and movement for people with Parkinson’s disease, Multiple Sclerosis (MS), and stroke survivors. Kaiser even has special support groups for adults with MS. But this poster was the most impressive — all about stress and how it manifests both physically and emotionally. That’s really the basis of my self-care treatment; whatever I can do to mitigate stress in my life so that I feel better. And there are so many stressors in life. Thankfully I continue to add to my tool case of de-stressors.

In the past I’ve always had a long list of questions and issues to discuss with my neurologist during our annual appointment. There have been periods when I saw her more frequently than once each year. But now, I feel like I’ve got a good handle on things and only had a few questions. We talked about many things — travel, my experience with a different healthcare system — and she did her routine exam which seems kind of subjective since she’s manually checking my strength and range of motion. She’s done this every year and takes notes so perhaps it’s less subjective than it seems.

To my surprise, she was surprised. With just about each test she remarked that I’d improved. She even said a few times, “you’re stronger!” I don’t want to get too excited; I won’t be signing up for any marathons or Himalayan treks. What I will do is continue the program I have cultivated — gentle yoga, Pilates, qigong and a multitude of other healthy physical and emotional behaviors.

 I walked out of the doctor’s office feeling quite full of myself. I know I have a progressive muscle disease. I know it’s dramatically changed the course of my life. But I’m going to do whatever I can, for as long as I can, to live the fullest life possible.


Letting Go

My neurologist recently confessed that what he does for people with my disease is really palliative care, which, according to Wikipedia, “focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the terminal diagnosis. The goal of such therapy is to improve quality of life for both the person and their family.”

For the past two years my spouse and I have been providing what I hope to be the best palliative care for one of our cats, Ginger. Ginger used to spend nightly bath time with me but hasn’t in the past several months. Nearly two years ago — November 11, 2015 — she was diagnosed with kidney failure. Since then we’ve had someone help us with administering weekly, then 2x/week, and now every day, subcutaneous fluids. We’ve kept up with her finicky eating requests and have tried all sorts of special cat foods and baby foods. We’ve spoon and finger fed her. She’s had two urinary tract infections and I’ve prepared myself for her final stretch at least 3x in the last year. But I think now is really her final stretch. And I’m taking it a lot harder than I imagined I would.

I love all of my cats — past and current — but Ginger is special. We found her through a rescue group and her only back story was, “found at the San Leandro BART (train) station.” I would do anything to know her real back story. The foster rescuer said she wasn’t a lap cat but Ginger proved her wrong. Not only is Ginger a lap cat but she slept on my arm for years. As my body muscles diminished I had to change that practice since I’d wake up really sore. But we’ve always continued our close relationship. She’s wise, has a sense of humor, and she has proven to have an amazing fighting spirit.

Last week she had a stroke, or seizure, that was so frightening and surreal because she didn’t seem to show a lasting impact. Granted, she has lost a lot of weight and has stopped grooming in the last couple of weeks. But as I held her during the seizure I talked her through “letting go” and was awe struck that she survived and within a few hours back to her somewhat-diminished self.

I made an appointment for in-home euthanasia services, then cancelled, and now have rescheduled. I’ve been in this situation before and there was no ambiguity that the previous cats were in discomfort and ready to go. But Ginger just keeps proving me wrong. Until this afternoon. I hate having this control.

Update

We put Ginger to sleep on Saturday morning. She came out of her heated pocket bed to be in our arms. She leaned back, smiled, and as the veterinarian said, she was “set free.”


Healing Sounds

Sound Symphony at Grace Cathedral, San Francisco Photographer: Dan Dion

My first Sound Bath experience was a couple of years ago. It was in a medium-sized yoga studio. The sound musician/artist/yoga therapist used gongs and crystal bowls. I was seated close to her set-up and the experience was interesting but a little disconcerting.

My next experience was with the same performer but I set up my yoga mat and props (for restorative yoga poses) in the back. That change in location made a critical difference in my experience.

Since then I’ve attended this type of experience several times with at least 5 different people performing or officiating. And I can safely say, I love it.

Each experience is different yet they all share the benefit of allowing me to relax my mind and body and instilling a sense of unity with others. Perhaps not community but a connectedness that extends to strangers and all living beings.

It’s all so new to me; I don’t have the language yet to fully describe the sensations, the clarity. I’m waiting to dive deeper into this therapeutic realm; soon I hope to interview one of the practitioners I’ve met.

My most recent experience was at Grace Cathedral in San Francisco. I used to attend an annual a cappella marathon at this church on New Year’s Eve day so you know the acoustics are special. They call this new, somewhat monthly, event a Sound Meditation. They’re not available for interviews but they did allow me to share their photo.

You can bring a yoga mat into the sanctuary and experience in a reclined position or sit in the pews. I sat this time and actually kept my eyes open. It was unique since there were five people on stage; my previous experiences involved only one performer. It was both an auditory and visual feast.


Pirate as a Disability Action Figure: Disability Awareness Month

 

Professor Catherine Kudlick, of San Francisco State University, directs the The Paul K. Longmore Institute on Disability and the annual SuperFest International Disability Film Festival.

Born blind, Catherine had numerous corrective eye surgeries and now lives with nystagmus, a condition of involuntary eye movement.

Learn about this year’s annual film festival and a new accessibility feature — audio description — and how pirates can be a tool for teaching students about disability.


Finalist for Best of Show: Podcast

I’m not shy. Well, sometimes I am but if I/we win this WEGO Health Award, there won’t be any shyness. I’ll appreciate a few seconds in the limelight but mostly I’ll look at this award — any award — as a way to reach more people out there. Because I’ve got a message and I don’t want to keep it to myself.

What’s my message?

 

The pithy message is — you can live a life filled with quality and dignity in spite of having a diagnosis. At least that’s how I’m trying to live my life post-diagnosis.

Over the years I’ve explored so many avenues learning about ways to increase my health and vitality. I’ve learned a lot. I’ve gathered a lot of tools and resources. I’ve developed a few practices and some routines worked for awhile until they no longer served me while others did not resonate for me. But I continue to maintain an open heart and mind.

While I feel pretty blessed to live in the San Francisco Bay Area where there are at least two excellent medical schools and many, many talented alternative health care practitioners, I realize not everyone has this access.

My hope is that with each podcast episode you’ll be able to take something away to help you on your health journey — your mental, emotional, and physical health journey. If you find something that sparks your interest, go deeper to explore it. I’ve heard of many people that have learned a new practice by watching YouTube videos.

If you know what you want to learn more about, take a look at the word cloud (tags) on this web page. If you don’t see what you want, let me know. You can send me a message (Leslie at GlassHalfFull dot online) or on the Facebook page.


Passion: Motivation to Move through the Bad Stuff and Experience Joy

Recently I attended an annual patient conference and had a conversation which served as a catalyst for a couple of blog posts and this podcast episode. What advice do you give someone experiencing apathy and a lack of motivation? How do you cultivate a passion which can make it easier to move through the challenges of living with a chronic health condition so you can still experience joy?

There are no easy answers.

Featured in this episode are three people I know who have shared their passion with me. Mindy brings her love of dance to our myotonic dystrophy community.

 

Hazel shares her knowledge and experience with service dogs to those with multiple sclerosis as well as other chronic health conditions. And James helps his co-workers and friends experience the Totality — and other celestial happenings.

To learn more about Mihaly Csikszentmihalyi and the flow concept, here’s a TED Talk, and the books I read: Flow: The Psychology of Optimal Experience  and Creativity: Flow and the Psychology of Discovery and Invention.


Passion

At the recent Patient Advocacy Conference I attended, I spoke with a community member. We’ve previously met but I’ve talked more with his family members. He’s always seemed to be rather shy.

He asked me how I motivate myself. I’ve been asked this before. Many people with myotonic dystrophy experience both overwhelming physical fatigue as well as extreme apathy. The first time I attended the annual patient conference I participated in a panel discussion. Afterwards I had someone approach me with utter disbelief that I had the disease. Even though I appeared to be similar in age to her daughter, I appeared to function like a normal person.

The more you learn about the disease, the more you realize the diversity of symptoms and severity. I’m sure there are many additional factors the research community doesn’t take into account, i.e. my self-care routines are like a full-time job.

But getting back to this young man (age is relative and he’s ~20 years my junior) and his question. There are definitely no simple answers and no silver bullet. Some people have more of a cognitive impact from this disease while others have more physical manifestations with muscle weakness. And what about our other genetics? Maybe I have a more inherent motivation quotient than he does?

But I wanted to be helpful and I appreciated he looked to me for advice. I asked him about depression. Having a progressive chronic disease can definitely cause one to be depressed and lack motivation. I asked him what gives him pleasure and he talked about athleticism. I realized, through our brief conversation, that having a passion is integral to feeling motivated. That was what I was able to come up with…I have a passion and everyone I know who is faring well with a difficult situation also has a passion for something. You’ve got to harness that passion to get you through difficulties.

The passion may be to sing opera, sail a boat, climb a mountain, chair dance, write short stories, or empower others to lead healthier lifestyles. So, how do you find your passion?


Patient Advocacy Organization

According to Wikipedia, a patient advocacy organization is, “an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.

I’m an active member of two patient advocacy organizations. One of them had their annual patient conference last week in San Francisco. The conference location changes each year to provide opportunities for families to attend that may not have the resources to fly across the country. It was either the 8th or 9th annual conference and I’ve attended nearly all of them. Each year the conference draws more researchers and pharmaceutical company’s involvement but, thankfully, the heart of the conference remains with the patients.

I really don’t like using the word, patients, because it doesn’t necessary define us. And we’re certainly not sufferers or victims. We have a rare, genetic disease and it nearly always impacts several family members. The annual conference is more like a family gathering.

Over the years I’ve developed friendships with many of my myotonic dystrophy carriers and their families. I can really say I know someone almost in every U.S. state with the disease. It’s fascinating to realize that many of these folks I never would have met had it not been for this disease. Some live in more rural areas of the country. Others live in big cities but lead a very different life from mine. Yet at least once each year we gather together, share knowledge, laugh, eat easy-to-chew food, and maybe clink our glass of wine or beer.

Last weekend I came home from the conference exhausted but today I remembered the wonderful feeling of being surrounded by people who each understood why I walk a certain way, why my energy waxes and wanes, as well as why I carry around small servings of soft food.


Multiple Sclerosis & Mindfulness Meditation

Gareth Walker, in northern England, works as a police officer and has progressive multiple sclerosis. His daily practice of mindfulness meditation enables him to navigate the physical and emotional difficulties of living with a chronic health condition.

Walker was first introduced to a mindfulness practice when reading Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn. Walker is featured in Jo Marchant’s 2016 best-selling book, Cure: a journey into the science of mind over body.

To learn more about Gareth Walker and his practice, visit his website, Everyday Mindfulness.


Looking for an Escape

I have a friend who is clinically depressed. I know little about depression though I realize whatever I went through in my mid-20s was more episodic and temporary and nothing like what my friend experiences. She had a bout of cancer years ago and claims depression is far worse.

Recently when I saw her, on her brief venture away from home, I asked how she spent her days. I often ask “how are you” and I have become aware that this is a somewhat annoying question for her. Her depression has kept her from a part-time job while she tries to find the best medication to regulate her emotions. Actually, I think I first asked her what she was currently reading as I know we both share a love of reading. But she said reading is currently difficult as she has trouble focusing. So, that’s when I asked, “how do you spend the day?”

I think we know each other well enough that she wouldn’t perceive this as a judging kind of question. Because, well, I’m not. I didn’t know what to expect her answer to be.

What she went on to explain was her involvement with an online game. She’s mentioned this before but I may have dismissed it because I know nothing about online games. I’ve never done it beyond the early Facebook trivia quizzes. The type of game my friend participates in involves avatars and levels of complexity and what she stressed as working together as a team or community.

The avatar she’s created is someone very different than how she perceives herself. She’s more outgoing and vivacious in this online world.

I couldn’t hide my fascination and I continue to think about her sharing. Thankfully she’s able to find this endeavor, feel a sense of camaraderie and safety without causing any harm to herself or others. I say this because many of us seek a way to escape our current situation. There are infinite ways to escape but do they help?

I trust that in time her body will acclimate to a new drug regimen and she’ll be able to return to work.