Category Archives: Blog

NorCal Resources Rock

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I am so grateful for the move I made to Northern California in 1989…even if it included experiencing the Loma Prieta earthquake. This is really one of the most inclusive areas in our country, especially for people with disabilities. I know of a family that relocated to California from the Midwest so their severely disabled son could reap the benefits of the Regional Center’s services as well as other state resources.

And the Ed Roberts Campus (ERC) is definitely one of the amazing resources. Located in Berkeley, California — across from a major public transportation hub — ERC houses a number of federal, regional, state, and nonprofit organizations providing services and resources for people with physical and/or developmental disabilities.

Located at a fully accessible transit hub, the Ed Roberts Campus is a national and international model dedicated to disability rights and universal access.
The Ed Roberts Campus commemorates the life and work of Edward V. Roberts, an early leader in the independent living movement of persons with disabilities. Ed believed in the strength of collaborative efforts: He called it “working toward our preferred future.”

Yesterday I attended the Momentum Expo sponsored by the Center for Independent Living. Here’s a short video I shot while at the Expo. The event was free. I had the chance to find out more about new and existing organizations, promote the podcast, and see friends I know from various aspects of the Northern California disabled community.

One organization housed at ERC is BORP: Bay Area Outreach & Recreation Programs. BORP has an adaptive fitness studio at ERC where I take classes. In fact, Valerie Jew’s Integrative Healing class is there. Lately I’ve been attending a World Dance for All class held in the BORP fitness studio. The next podcast episode is all about Dancing so you’ll soon hear more about this class.

That Peaceful Easy Feeling

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To celebrate my birthday, one of my requests was a day at the spa. Not just any spa but this Zen-style spa out in the woods about an hour and a half from where I live. It’s pricey but it’s an experience. And that’s what I’m after — experiences — not more stuff. I’ve got enough stuff.

 The day began with a lovely drive on the back roads of Sonoma County. It was unintentional but the GPS fed us this circuitous yet gorgeous route. I saw parts of Sonoma I’ve never seen — so green and lush — it’s amazing how just a drive through more nature, less concrete, can ease your tension.

The massage treatment I signed up for focused on the body’s meridians and included essential oils. Surprisingly, the 75-minute treatment has you wearing loose clothing; it reminded me of a Thai massage I once had. Although I usually dislike lying on my stomach, I went for it in spite of the nearly constant sinus drainage I experience. The therapist moved my limbs in different ways than an ordinary massage would necessitate.

I didn’t fall asleep but I was very relaxed. It’s often disconcerting that you have to get up so soon after a massage but I felt a little less pressure here. I wasn’t forced to face the world too soon. What awaited me after the massage was a beautiful meditation garden which you enter through a gate that requests silence.

In the last couple of years I have a new respect for silence. I crave it. Is this part of growing older? Or perhaps it’s a result of having a neurological condition where I often find my senses overwhelmed by bright light and a cacophony of noise?

Seated under a pagoda sipping warm tea, I just watched and listened (and naturally shot a little video). My body was relaxed, my mind was relaxed. I was in the moment.

Can I capture this moment again and again? I want this moment to last longer. I want this moment to repeat, and repeat, and repeat.

Outliving My Mom

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This photo is about 30 years old. It’s one of the last ones I have with both of us before her cancer diagnosis. In older photos she wore those awful turbans to cover her nearly bald head.

My mother was diagnosed with myotonic dystrophy (DM) circa 1990 before there was a DNA test available. When my parents told me of this diagnosis they never mentioned it was a genetic condition nor that it was serious. All I knew was that she appeared before medical students at the University of Miami School of Medicine so they could see that one leg calf had less muscle tone than the other. She had more severe health situations than thin calf muscles and had been repeatedly hospitalized.

In 1990 there was minimal information available about DM. As it turned out, so many of her health issues (gallbladder and GI problems, early cataracts, daily fatigue, respiratory problems, etc.) were related to the disorder. In the last few years there have been scientific studies looking at DM and cancer which suggest that people with DM are twice as likely to have certain cancers. My mother smoked her entire adult life, was often depressed, and drank alcohol daily — creating a fertile environment for the lung and brain cancer which caused her death.

We have also learned through scientific research that myotonic dystrophy, in addition to being passed on with 50% probability for each offspring, has a component called anticipation. Essentially this means that the severity of the condition increases with each generation and often with each birth. My parents had another daughter nearly two years after I was born but she lived only three days. Now I know this child had the more severe congenital form of DM.

So tomorrow I turn 56 years old; my mother died 6 weeks before her 56th birthday.

Searching the Internet, shortly after I was diagnosed in the late ’90s, I discovered a table with data showing the average life span for adult-onset DM being between 48-55. My mother fit that data set.

So tomorrow is bittersweet. I like to think that all of my self-care and positive attitude has pivoted me beyond the dire expectations. Yet these past few months have proven to be physically and emotionally challenging. My respiratory issues, and subsequent sleep study, show that I need breathing assistance at night. My energy has a marked decline and I worry that I won’t be able to recapture it.

Birthdays can be difficult for anyone after a certain age but perhaps more so when you have this anticipated early decline…each year represents more loss to come. I’ll be celebrating with a few friends at a karaoke bar and hopefully that will kick my butt into a more glass half full perspective.

New Year Resolutions

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New Year’s Resolutions

We’re a week into the New Year. As I understand, it’s still acceptable to talk about the new year and even make resolutions throughout the month of January. There is no mandate that this must happen during the first few days of the year. We want to be thoughtful, intentional…clear out the holiday fog.

I don’t know about you but last week my email inbox was filled with numerous offers to help me make resolutions for the new year. The vast majority of them have some monetary cost associated with them — make meditation part of your new year and sign up for this online course, maintain dietary goals for the new year by signing up for this meal plan, or buy these books to get you started for the new year. Whole Foods even mailed me a brochure titled, Feed Your Resolution: Solutions for Special Diets.

Thank you very much but I think I can do this on my own.

Actually, this may the first year I’ve not made any New Year resolutions. Basically, it’s all about change. We either want to start doing something different or stop doing something we’re doing which we know no longer works for us. Well, I don’t need the Gregorian calendar new year, Chinese New Year, or Jewish New Year to initiate any changes.

Having a chronic health condition is all about change — monthly, daily, and sometimes hourly changes. What may have worked for me yesterday, no longer does today and I’ve got to work around that to achieve my goal whether it is opening a bottle, getting nourishment, or soothing some pain or discomfort.

I am open to change…thankfully…because you know — a sure sign of insanity is repeating the same patterns and expecting different results.

Back to New Year resolutions, there’s certainly nothing wrong with making them. It’s the maintaining them that can be problematic for some. Here’s a short piece to help you with the process. Last year I interviewed a few friends about their resolutions. But I’ll resolve to continue learning and making changes on an as-needed basis…which is definitely more than once every 365 days.

 

I Won’t Be Home for the Holidays

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I’m not a very sentimental person but sometimes something triggers that emotion and tears are shed. That happened today in my car as Frank Sinatra’s voice came on the radio  singing “I’ll be home for Christmas.” Frank Sinatra was big in my childhood. Although I identify as Jewish, half of my family were (they’re nearly all dead) Catholic and Frank Sinatra was a god for these first-generation Italian-Americans born and raised in Bensonhurst circa World War II.

Italian Christmas Dish

Holidays at our house included lots of music — Frank Sinatra, Mario Lanza, and, of course, Barbra Streisand. So I guess the sound of Ole Blue Eyes smooth baritone combined with the lyrics bolted me into a few melancholy moments. Once my mother passed away — some 25 years ago — I lost the excitement I usually had during holiday time. It’s not that I get depressed but I knew I had to create new traditions and new memories. And I’ve done that.

For the past several years my partner and I do a little Chanukah and a little Christmas but in our own unique style. We spend Christmas Eve putting together holiday-wrapped packages and deliver them to homeless people on Christmas Day. I definitely didn’t do this growing up in Florida.

This year we’re traveling to see family — my in-laws — which is a bittersweet experience for me. Being around a lot of people and children tends to make me uneasy — I have little control over the sensory environment, the food, and my ability to feel comfortable. And then I remember how I celebrated the holiday with my crazy, alcohol-laden family with music blasting, lots of delicious food, and waiting until midnight to open the gifts. Mario Lanza music blasting and my mother and neighbor singing loudly. Even if they were still alive, I doubt I’d enjoy all of the stimuli.

Getting back to the aforementioned song, Frank talks about going home…if only in his dreams. What is home? Some of us may live in the same place we grew up but that sense of home may still be different for us. Maybe some family members have passed away or we just don’t have the physical or emotional strength we once had? Or, in my case, it’s both. I can go from singing along with a Christmas song on the radio to exhibiting Scrooge-like behavior in a matter of minutes.

But I will try to keep a lid on the Scrooge during my holiday visit. And if I need to, I can resort to my dreams.

May you have a peaceful holiday season.

 

Pranayama

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Yesterday I went to my second Pranayama class at a well-respected yoga institution celebrating 40 years of yoga education in the San Francisco Bay area. It’s a monthly session focused on different methods of yogic breathing. I’ve always wanted to learn more about pranayama (a Sanskrit word that translates to “extension of the prāṇa (breath or life force)” or “breath control”).

Alternate nostril breathing. There are many pranayama techniques; this is just one.

In traditional yoga, as I understand, the natural progression is from asana practice (yoga postures or stretches) to pranayama to meditation. And I want to take up Gareth Walker’s challenge to me — start a daily meditation practice. With pranayama I can practice respiratory health and integrate daily meditation into my life.

I have felt the benefits of meditation — even with isolated short practices. I crave that stillness.

In yesterday’s 1.5 hour class we began on our backs in a restorative pose. For most of the class we reclined in different poses and focused on breathing in our lower back — expanding the space for our kidneys. During the final third of the class we were in a seated position. And that’s when I felt it…sort of like floating. Momentary bliss. If I could capture and bottle the sensation I couldn’t use it that much. I couldn’t write a blog post feeling blissed or could I?

My bliss may be different than your bliss. I felt the release of all tension in my body. The release of all thoughts of past and future and was firmly rooted in the now. No physical or emotional pain or stress.

So I asked the teacher how to begin a regular practice. She told me a good way is to practice for 20-minutes at least 4x/week. Start in a relaxed pose and work up to the seated position. Sounds simple enough.

Embracing the Journey

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A few weeks ago I attended a free resource fair in San Francisco at the Jewish Community Center. The event is called Embracing the Journey: End of Life Resource Fair. All of the resources — and panel presentations — are related to end-of-life decisions. It sounds like a real downer but it wasn’t. In fact, everyone was refreshingly friendly, inquisitive, and engaged.

Unfortunately I was only able to stay for an hour and missed panel presentations covering topics such as Loving Support and Choices for Pets During Transition, Preparing Financially for the End of Life, and Your Life Story: A Labyrinth Walk of Wisdom. But I did try to make a quick visit to each vendor and pick up any available literature.

Chalkboard activity at entrance to Embracing the Journey Resource Fair

There’s a great resource page with videos from some of the panel sessions.

Of course you don’t have to be Jewish to attend this annual event nor to benefit from the information presented. I am interested to know if a similar resource fair exists in your community — whether it’s organized through a church group, hospital, or government entity. Please leave a comment below.

Annual Neurological Exam

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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

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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

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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.