Outliving My Mom

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.


Rare Disease and the Need for Research

February 28th is Rare Disease Day. This year’s theme is: Research. How can we support research efforts for our rare disease? We can donate to our patient advocacy organizations that

spearhead research efforts. And we, as rare disease patients, can participate in research studies and clinical trials.

This podcast episode features three individuals. Amy Lynn Ream and Dean Sage both participated in phase 1 clinical trials for a potential treatment for myotonic dystrophy. Hugo Trevino, who has spinal muscle atrophy (SMA), is in his third week of Spinraza infusions and already feeling positive effects.

Hugo recommends for all those with a rare disease, check out this link to see if you’re eligible to participate in any research studies.

If you care for someone with a neuromuscular disease — like myotonic dystrophy, SMA, or the 40+ other rare neuromuscular diseases — please donate to the Muscular Dystrophy Association.

 


Sickness & Grief: Lessons Learned

In the final stretch of fighting the FLU, I decided to explore why my immunity may have been off. It’s a story, a short story, that I hope is thought-provoking for you. 

If you’re interested in learning more about building your immunity, check out this month’s featured book selection in the side bar. For more on respiratory health, make sure you listen to this podcast episode. Check out the latest news about the flu season from the CDC.

If you want a reliable companion while fighting sickness, check out Alexa and the Echo Plus. Okay, Alexa is not a reasonable substitution for a human or pet but she never once complained that I was asking her too many questions.

Not a bad companion when you’re bedridden.


Support Groups: Attend, Launch, or Facilitate

It’s all about support groups! Listen to several support group facilitators talk about their experiences attending and eventually facilitating a support group. Patient advocacy organizations represented include the Muscular Dystrophy Association, Multiple Sclerosis Foundation, and the FSH Society. Support groups organized through MeetUp cover chronic illness and life transitions.

For more information about launching a support group, check out this recent article in Quest magazine.

Feel free to comment here or on our Facebook page. If you facilitate a support group and want to be part of the conversation, contact us.


New Year Resolutions

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

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

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

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.


Every Breath You Take: Tips for Respiratory Health

It’s cold and flu season so I asked a respiratory therapist I know — Lee Guion — to offer some guidance. Here are Lee’s 7 Tips for Respiratory Health which are critical for those with a condition that causes weakened muscles:

  1. Attend a Multi-Disciplinary Clinic
  2. Get the flu and pneumonia vaccines
  3. Treat upper respiratory tract infections
  4. Hydrate
  5. Maximize your nutrition
  6. Exercise — especially disciplines coordinating the breath with movement
  7. Sleep Well

 

But this list is only a list. You should listen to the podcast.

There are many online videos to guide you in a practice combining breath work and movement but here’s one from the Niroga Institute for people with asthma.

Here are Homework Assignments for the rest of 2017:

  • Listen to previous podcast episodes about everything from medical cannabis to mindfulness meditation as well as fermentation.
  • Soon there will be cool videos here.
  • Check out this documentary film, Unrest. It’s a “story of love and loss” about people diagnosed with myalgic encephalomyelitis (commonly known as chronic fatigue syndrome).

 

 


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.