The service was meaningful; we learned about Frank’s youth and several parts of his life that were never mentioned in our group. We had the opportunity to share our memories of him and remind Nancy of how much he loved her.

After the ceremony we lingered, going from conversation to conversation, partaking in the spread of some of Frank’s favorite foods. Gwen and I talked about the comfort that organized religion can bring to people, James and Alicia offered suggestions for my summer trip to Brazil, and Jill told  me  about the “below market rate” apartment she’s getting after being on a list for 12 years.

Nancy gathered everyone outside to unleash a blue balloon — Frank’s favorite color — off into the ionosphere.

A bittersweet occasion brought us together and I realized again how honored I am to have this opportunity. I can’t help but reflect on much of what I’ve studied about social support over the past few years. The “celebration of life” could be a case study with check marks for the five types of social support:

• Emotional: Everyone’s warm embraces greeting one another and upon leaving.
• Informational: James and Alicia sharing resources with me for my upcoming trip.
• Tangible: An offer of a ride to a member using public transportation.
• Esteem: Sentiments shared with Nancy about the brightness she brought to Frank’s life
• Network: Phone numbers exchanged between a relatively new member and a “mentor” member that hasn’t been in regular attendance.

Of course, dissecting an experience like a memorial service takes away from the whole gestalt…and the experience typified for me the importance of support groups — forming a unique community with people you might never meet in your life. This community doesn’t replace your family, friends, or other groups you’re affiliated with to reflect your multi-faceted life. The support group exists to transcend all of that and to realize that we as humans can form bonds based on our utter humanity, or rather, mortality.

And we don’t celebrate the mortality but we acknowledge it and celebrate the life — hopefully well-lived — that came before it. Thank you, Nancy, for giving us this opportunity.

I was  momentarily impressed, for lack of a better word, that he was practicing good hygiene. Until I turned back toward him, moments later, to catch him lighting a cigarette and closing his car door.

So, I wonder, how did he get into the routine of purchasing one of these anti-bacterial products, cleansing himself, and thinking he’s preventing exposure to germs? Did his wife or mother force him to this? And is it the cognitive dissonance factor which precludes his awareness that cigarette smoking is far more dangerous to him and his family?

It reminds me of one of my favorite stories to tell. Years ago I had to pick up mail from my old apartment and the pregnant wife wanted to show  me all the changes she and her husband had made to the townhouse. Fixtures in the bathrooms and kitchen had been modernized, new carpeting, and a room all fixed up for the new baby. I noticed the garden area between the living room and the outside garage had been dramatically altered. The lovely rose bushes had all been removed. When I inquired she told me they were concerned about the rose thorns for the new baby.

One third of the living room was occupied with a massive flat screen TV and entertainment center; the room was not very large so it was a bit overwhelming. Another good portion of the room had a huge cabinet which I wasn’t sure was metal or some other material. I asked about it and was told that her husband, a prison warden, stored his gun collection in the cabinet.

And so…this story for me represents all the weirdness of human beings. I’m not going to dig up statistics but I just wonder what the numbers look like for children hurt by rose thorns and children hurt by guns in the house.

Why do we have some behaviors and take action to fiercely protect ourselves while ignoring other behaviors and actions that may have a far more deleterious impact?

I did start doing the seated lotus position when I was very young. Maybe all children can do this but I continued doing it and now it’s easy to maneuver into. It’s comforting to fold my legs into a pretzel.

But, I digress.

There are so many things I love about yoga but I’ll share just a few. I enjoy doing it in a class with a really good instructor. I’ve gone through periods where I start a home practice — either looking through yoga postures in a book, with a VHS or DVD, or from memory. It does feel good to start your day off with a few sun salutations in the morning — before breakfast, before checking email. But, I love the sense of community I feel in my local yoga classes so now I try to attend a class 2-3 times each week.

I’m fortunate to live in a small community where we have good yoga for reasonable prices. The local hospital has yoga classes (8 class series for $40) three times each week. Then we have Alameda Yoga Station offering community yoga (5 class series for $40) during the day. Apparently local gyms offer yoga classes as well. There are lots of options to meet one’s schedule, abilities, and pocket-book. Most of the classes I attend teach gentle yoga.

If you don’t know any thing about yoga, here’s a little history. I believe that most of the yoga instructors I see practice Iyengar yoga. Years ago it seemed that hatha yoga was most popular. In San Francisco and Berkeley there are places specializing in Bikram yoga which includes turning the thermostat up to 90-something degrees. That’s not really my thing — heat — and I don’t think it’s appropriate for middle-aged people with chronic health conditions. I go for acupuncture across the street from a Bikram yoga studio and have only witnessed really young people frequenting the place.

Again, I digress.

Yoga works for me. When I don’t do it for a while, I feel it. My digestion isn’t as good. I experience more body aches. I don’t sleep as well. I can’t concentrate as well. I just don’t feel right.  But, there are other paths to take. I know some people really enjoy tai chi. I took tai chi classes  several years ago and my arms would hurt. It’s a lot of holding your arms up, moving them around. Not for me. In yoga I have a few props that help with yoga postures that are more demanding of my wrists and arms.

Yoga is not just a form of exercise; it has a long and rich tradition which I won’t delve into because…I’m just not qualified. There are many websites devoted to yoga practice that you can explore. Yoga is something of a life style — blending meditation, diet, and exercise. I learn about my body but I also learn about listening which helps with my mental focus.

Sometimes I’m in a class and we’re on the floor, unable to see the teacher demonstrating a posture, and I must really listen to what she is saying. Believe me, it’s not always that easy to listen and move your body accordingly. Often a teacher speaks about an intention rather than an actual movement. It’s ever-so-subtle but it often produces a shift that is palpable. For example, lower your kidneys. Before yoga, I really didn’t have much of an idea where my kidneys are nor did I feel like I could control them. But there’s this intentionality in yoga that I’m just beginning to understand after years of practice.

One more thing. Yoga is non-competitive. Of course I’m aware of which postures I’m more comfortable doing. The ones requiring balance are annoying me a lot lately. But each person is so different. There are people in their 80s in some of my classes and they can do a few things that I am not good at. Yet, I still can do a damn good lotus position and that’s challenging for many. When something hurts, or you feel a little uncomfortable about trying it, take care of your self and don’t do it. I don’t do head or hand stands. I arrive early for class and place my mat in a corner; I like having the walls right there for balance postures.

Next month I’m taking an evening class in setting up a meditation practice; it’s taught at the yoga studio. Stay tuned for further discussions about yoga and meditation.

One of the most common effects of my health condition are frequent coughing fits. Some times it happens when I’m talking, sometimes when I’m eating, and sometimes it seems like there’s no catalyst. I just cough and have difficulty catching my breath.

I found that sucking on a throat lozenge really helps. Often more soothing than drinking water because swallowing is involved with drinking and sucking is something I can more readily handle. So, I keep a ready supply of various types of hard candy/lozenges with me at all times. Even when I go for a casual walk outside my house I may carry nothing but my house key and my stash of suckers.

The muscles used for eating — chewing and swallowing — have weakened in the last year. Thankfully I’ve been a vegetarian for so many years that I don’t worry about chomping on a piece of steak but I really do need my vegetables cooked sufficiently. A tool to help me is a little knife I keep in my purse. Sort of a camping knife but not with all the other Swiss Army gadgets. I’ve actually not used it yet and tend to put the hard-to-chew food bits aside  in a napkin. The best tool is probably to remember to ask for well-cooked vegetables, but I forget.

The occupational therapist at the local MDA office has catalogs of all types of tools to assist people with their activities of daily living. She often comes to the support group meetings with lots of samples. Once we had a support group meeting devoted to tools that family and caregivers have helped craft to help their loved one with tasks such as putting on socks and reaching for items in overhead cabinets. It’s amazing what a little creativity can accomplish.

I’d love to hear from others about tools you’ve found useful.

Several years ago a couple of acupuncture student interns were guest speakers at my MDA support group. They gave a little history of acupuncture and Traditional Chinese Medicine and promoted a study. They were looking for people with mobility problems. At that time I didn’t qualify. But they discussed a number of ailments that acupuncture has proven helpful for. One of them was carpal tunnel syndrome (CTS).

I was coming off of a project that had me at the computer for hours and hours. My right forearm was killing me. I decided to give it a try.

During the initial meeting I filled out forms and was asked a lot of questions about my health. Naturally I discussed my chronic health condition but at that time I was also feeling weak, a lot of fatigue, and experiencing intermittent bouts of constipation and diarrhea. Apparently acupuncture and Chinese herbs could address these issues as well.

The focus for the first few meetings was my CTS. I can’t recall how long it took to alleviate some of my pain and discomfort but eventually the other issues were addressed.

I had heard many stories about friends boiling Chinese herbs and stinking up their house. I’ve been fortunate to mostly have herbal pills prescribed. Usually I respond very well to them. There are a couple formulas that I rotate depending on the weather. There have been a couple times I’ve boiled raw herbs, or flowers, for a  more pressing issue. Boiled chrysanthemum liquid compresses helps alleviate eye puffiness from a chronic condition I have called blepharitis.

When I was a child I suffered from allergies and had weekly allergy shots for several years. Even though I grew accustomed to the shots, I still don’t like needles. In fact, I close my eyes when the acupuncture practitioner is inserting the needles. It helps me relax. The needles never hurt me. Sometimes there’s a little stinging sensation but it subsides.

It’s really just another soothing body treatment like massage or a hot tub.

Suffice it to say, my now monthly visits and daily herbs keep me stable. I can’t say that acupuncture and herbs alone are the silver bullet but combined with other self-management behaviors, I generally keep my emotional and physical health in balance.

The support group met in a small conference-style meeting room at a local hotel. People gathered around a long, white table-clothed rectangular table. The attendees were diverse in their age and severity of noticeable symptoms. It was a bittersweet experience and I wasn’t quite sure if I belonged.

The facilitator tended to dominate the discussion. I remember a couple of guest speakers at future monthly meetings but other than that content, I mostly remember hearing a lot of venting by the facilitator. Somewhat abruptly after only a few months of attending the group, the facilitator decided to quit after leading the group for 13 years.

Again, I remember very little of the scenario of events, but somehow I was asked to be the facilitator. Also at this time the hotel decided they could no longer afford to donate the meeting room. I accepted the challenge and used some connections to find our new location at Kaiser Permanente Hospital. We still meet there, monthly, and now offer a quarterly Caregiver’s support group and quarterly Myotonic MD group.

Last month I began facilitating another MDA-sponsored support group in San Jose. This group’s location is at a mega-church in their “Multi-Purpose Room” which apparently means anyone can enter the room as a conduit from getting from point A to point B. As the saying goes in real estate, it is also true for support groups as well, “location, location, location.”

Although my role as a support group facilitator is a departure from my predecessor’s (I don’t use the group as a soapbox for venting), there still needs to be a sense of a safe and private space. Little venting takes place but people do share about their feelings and discuss sensitive topics. At a later time I will address this topic of support group location again but suffice it to say, I’d like to find another location for the San Jose group.

For a recent MDA Seminar which I attended to promote our support groups, I drafted a list of Top 10 Reasons to Attend Support Group Meetings:

1. Meet other people with a similar condition.
2. Listen to guest speaker presentations on relevant issues including physical therapy, financial planning, accessible housing, or navigating public transportation.
3. Practice adaptable exercises such as chair dancing or seated yoga.
4. Find out about local resources such as health fairs and expos, nonprofit organizations, and special events for people with chronic health conditions.
5. Speak directly with the MDA Health Services Coordinator.
6. Share with others your tips & tricks for living with a chronic health condition.
7. Learn techniques to help manage your fatigue, nutrition/diet, exercise, and relaxation.
8. Hear about the latest MDA events — where you can learn, help raise money, or just have fun with other MDA families.
9. Discover new ways of doing things through demonstrations, videos, and other support group members.
10. There is research evidence that people who attend support groups for chronic health conditions experience psychosocial benefits such as improved coping skills, lower depression, less stress and anxiety, greater sense of well-being, and enhanced quality of life.

Some of these reasons are specific for MDA but perhaps apply to the health organization affiliated with your chronic health condition.

Feel free to add your reasons to attend.

In early September I went to a Diabetes Summit in Sacramento and then a week later to the IDMC-7 in Würzburg, Germany. So much was swimming through my head…I have written, and mental, notes on lessons learned during these two events…but time has passed. Somehow I’ll address these, perhaps on the Resources Page.

In late October an event I spent a year planning took place — the first ever Special Needs-Special Services Resource Fair — sponsored by the City of Alameda’s Commission on Disability Issues. We had about 40 vendors from our city, county, and a few state and federal organizations. It was a great event, lots of networking with organizations providing services to people with physical and/or cognitive disabilities. Unfortunately attendance by the public wasn’t high so we’ve got work to do.

Right now I am thrilled to be moving much closer to conducting my research study and graduating in May. If all goes according to “the plan.” And sometimes these plans just don’t work like you want them to. I didn’t think it would take 5 years to finish this doctoral program. But, here I am.

Today I met with a support group facilitator for adults with lupus. We have so much in common and hopefully in the new year we’ll begin a support group for support group facilitators. If you live in Northern California, and facilitate a support group for adults with a chronic health condition, please contact me.

Patty James is a local health educator and nutritionist. She spoke about the need for omega 3 fatty acids which are found in brain-healthy foods such as walnuts, flax seeds, and wild caught salmon. She stressed that we buy our nuts and seeds raw. Another essential ingredient for a brain-healthy diet is water. Our brains are 80% water so it’s vital to hydrate. For people that find water’s taste boring, try adding a little juice to your water. And if you didn’t know already, caffeinated drinks and sodas are not hydrating.

Personally I love good-tasting water. I consider San Pellegrino my wine.  When I’m feeling a bit decadent, I buy Metromint waters. A chilled bottle of the chocolate Metromint is amazing.

The next speaker was William Grant, PhD, a health researcher and founder of SUNARC. Dr. Grant spoke about the benefits of vitamin D for the brain and body. I’d read recently in the news about studies of children developing rickets due to lack of sun exposure. Rickets? In the year 2009 in America?!

Apparently the lack of vitamin D has been correlated to 14 types of cancer as well as diabetes, autoimmune diseases, and cardiovascular disease. If you want to know more, I urge you to check out the weblink above or do a web search. I’m definitely not doing justice to these topics.

Dr. Daniel Amen is famous, and like Suzie Orman and Wayne Dyer, a staple on PBS. I personally have never read one of his books but his name was familiar. His work focuses on brain imaging studies, and we were treated to pictures of brains from heroin addicts as well as healthy brains. Amen told us that sugar and fat work on the addiction centers of the brain like heroin.

The gist of Amen’s presentation could be summarized in his first of 10 steps to change your brain, “Boost your brain to lose your body.” Apparently 20-30% of calories are consumed by the brain. The message is simple — get plenty of sleep, exercise, stay away from toxins such as caffeine, alcohol, and nicotine. I won’t go into all 10 steps; you’ll have to buy his latest book for that. Here are a few other simple tips:

• Eat a nutritious breakfast and smaller meals throughout the day
• Try to eliminate simple sugars in your diet.
• Know your body mass index.
• Know how many calories you consume each day. For most people to maintain their weight, consume about 2,000 calories.
• Brain healthy spices include turmeric, saffron, sage, oregano, rosemary, mint, cinnamon, and ginger.

And Dr. Amen reiterated the need for omega 3 fatty acids and vitamin D.

Dr. Adam Gazzaley is the Director of the UCSF Neuroscience Imaging Center. His brain scans are different from Dr. Amen’s. Gazzaley works with functional MRIs — pictures of the brain when it’s engaged with an activity.

Apparently Gazzaley has worked on aging since he was 22 years old. He clarified the distinctions between normal aging, mild cognitive impairment, dementia, and Alzheimer’s disease. Dementia is a syndrome, not a disease. Our cognitive abilities for speed and executive functions peak in our 20s. Sad news, huh?

Again it was reiterated how important diet is; Gazzaley recommended the low calorie Mediterranean diet. I think Andrew Weil promotes this diet as well. Physical exercise, mental exercise, and he advocated for stepping out of your comfort zone by challenging yourself. He suggested socializing and travel. Maybe starting a blog?

The next presenters were Phil Jacklin, PhD and Steve Fowkes, a biochemist. The time allotment for the symposium was near its final thirty minutes by the time these men were introduced and they rushed through their Powerpoint slides. It’s all about Alzheimer’s disease — the connection with a mercury imbalance and other risks such as root canal surgery. If you’d like to know more I suggest doing a web search on their names; Fowkes said he has a YouTube channel where his entire 1.5 hour presentation can be viewed.

The final speaker, Dr. Judith Orloff, is another well-known person with a number of published books. She was very conversational, no Powerpoint slides. I sat back and listened and didn’t take many notes. She’s the kind of doctor, a psychiatrist, you’d want on your team. She’s not quick to write a prescription and wants to know your spiritual beliefs. My favorite line of hers, “we can learn to harness our own biology.” And I so believe in that. I plan to read one of her books very soon.

I still walk, love to walk, and consider it a gift. I have tripped a lot but thankfully never hurt myself. In the last couple of years I’ve developed drop foot which is common for someone with MMD. This is why I sometimes trip; my feet just don’t have the pick-up and go like they used to.

You can go months without noticing you have less ability than you’re used to, often because the rest of your body is compensating. That’s why fatigue becomes an issue. For me, my thigh and calf muscles are working harder to compensate for the drop foot.

I’m going overseas next month to the 7th International Myotonic Dystrophy Consortium Meeting to present a portion of the research I’ve done on support groups for adults with chronic health conditions. I’m concerned about walking in unfamiliar areas and walking slowly. I just can’t move very fast. I know the MDA Office has a loan closet with available canes but I’ve heard from more than a few people that a trail hiking pole can be very helpful.

And now I’m the proud owner of a very lightweight hiking stick from REI. The cashier was curious about my purchasing only one. I guess real hikers are using them to trek at a faster pace?  Hopefully it will increase my walking security as well as ward off small pests.

In college I still ate meat but started to take a little more control of my diet. I often had stomach problems in addition to the bloat. Half way through college I stopped eating beef. A few years after that I gave up chicken and fish. I finally gave up turkey when I moved to the west coast about 20 years ago.

Becoming vegetarian wasn’t easy but I did it gradually. My impetus was to feel lighter and have fewer stomach upsets. It probably would have been much more difficult if I hadn’t lived in northern California where most restaurants have at least one vegetarian option. I enjoyed cooking for many years and that made it easier too.

Rather than look for an antacid or some other pill to cure my bloat and icky feelings, I experimented with my diet. There were times when friends and family were less than supportive but I knew I was on to something. A few years after I gave up beef I was at my parent’s house for dinner. My mother insisted I eat some of the brisket. I ate a little, after all I had no problems with the taste of meat. That evening I felt the heat move through my system. It was truly palpable. I didn’t get sick but the feeling wasn’t comfortable. I never ate beef again.

Self-management is a set of behaviors to help a person manage their own illness. According to health researchers Lorig and Holman, there are five essential self-management skills that apply to people dealing with chronic health conditions.

• The first skill is basic problem-solving where several potential solutions to a problem can be generated and evaluated for the best option.
• The second skill is decision making. Chronically ill people face decisions on a daily basis, often because they are dealing with unpredictable health changes. Having adequate and timely knowledge helps with this process.
• The third self-management skill is resource utilization. This refers to any type of community or health resource that helps someone manage their health condition.
• Forming a partnership with a health care provider is the fourth self-management skill. Since a chronic health condition is not acute, a unique type of relationship can be fostered with health care providers.
• The final self-management skill is taking action by setting attainable, short-term goals.

Like I said, I knew nothing about self-management 20-something years ago when I started to change my diet. I didn’t even know I had a genetic disease. But I felt strongly about feeling good and doing it in a way that was healthy and made sense.