Planning for the Future

Recently my partner and I went on a road trip to visit a friend in Southern California. This friend – I’ll call her Debbie – was the first friend I made with a similar neuromuscular disease diagnosis (not DM). We met at a support group over 16 years ago. Debbie’s a few years older than me, but we share many cultural similarities so it has always been easy to relate to one another.

Debbie chose to move south for warmer weather, but within a month of her relocation she suffered a stroke that has left her fairly incapacitated. She requires round-the-clock care that is provided by an attendant found on Craigslist. As I understand, her minimal savings precludes her from some government subsidies, yet her savings will only last so long. She has limited family but a network of close friends engaged in helping with paperwork and decision-making.

Over the years, our phone and in-person conversations have been somewhat sardonic and bordering on depressive. She openly shared about her physical and emotional pain but still made great strides to exercise and remain independent. Occasionally we did talk about what our “comfort zone” might look like, i.e. at what point we’d want to throw in the towel or give up. I’ve always appreciated the opportunity to speak with her about this because most people don’t want to go there. In our society it’s rare to find a person openly willing to talk about their decline.

The night before our anticipated arrival I didn’t sleep well.

We arrived in town a few hours later than planned, and with my diminished energy I just couldn’t face seeing her. After a good night’s rest we brought a New York style brunch to her home. It took 30 minutes for her caregiver to prepare Debbie to see us. She could barely keep her head raised and wasn’t able to speak in full sentences. My partner and her caregiver took turns helping Debbie eat, adjusting the thermostat, and responding to her requests from a wheelchair that she could not operate herself.

After a couple of hours we left so she could go to a doctor’s appointment and – quite honestly – so I could process the situation myself. She cried as we were leaving and we promised to return in the evening. We did, and thankfully she was much more lucid as we sat at her bedside, straining to hear her voice while the television was on. It was not an ideal situation, but I saw glimpses of the Debbie I remembered.

I never was able to have the conversation with her that I thought we might have.

Her friends have told me she talks about wanting to die, but she didn’t bring this up with me. She moaned a lot during our first visit, reminded me of how much weight she’s lost, but never talked about the future.

I don’t know what Debbie’s future is. I know I couldn’t live like that, but who am I to comment on what Debbie’s definition of quality of life is? We all have our comfort zones.

What I CAN do is learn as much as I can and prepare for my own eventual death. As part of my personal and professional goals for 2015, I will be involved in preparing webinars and perhaps other informational materials about end-of-life care from a few different perspectives – legal/financial, palliative/hospice care, and the psycho-emotional issues for caregivers and their family. I hope you will join me with this exploration.

[originally posted: http://www.myotonic.org/planning-our-future]


Celebration of Life

Yesterday I attended a memorial service — or as Nancy, spouse of the recently departed, prefers to say, “celebration of life” — for one of our support group members. In the 11+ years I’ve been facilitating support groups for adults with neuromuscular diseases, this is the first service I was invited to. Several members have passed away but often I found out much later. But Nancy has continued coming to the support group and feels a part of our “family.” I was delighted to see many familiar faces from our group.

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.

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Hmmm

The other day I was pausing in my car before heading to another errand and noticed a young man getting into the car next to me. He left the door open while he squeezed something into his hands. I realized he was pouring a hand sanitizer product into his palm and fiercely working it into both hands.

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.

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Yoga

I can’t remember when I started doing yoga. I may have tried it for the first time during my college years in New York. Or, an introductory class I took in the late 80s in Fort Lauderdale. That is my earliest memory of doing yoga postures, or asanas, in a classroom environment.

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.

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Tools

In the last couple of weeks I added a new tool to my handbag. Wasn’t planning on it but came across one of those GripIt tools that has about 5 parts to open various containers. I haven’t used it yet but I do feel a greater sense of independence knowing I have it. Which got me to thinking about the other tools I’ve gathered over the years.

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Accurate Puncturing

Leslie at the acupuncture clinic

Leslie with acupuncture needles

This little play on words occurred to me earlier today as I lay prostrate with various needles in me. It’s a monthly habit. Sometimes there are good habits.

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).

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Where in the world have I been?

I’ve had the best of intentions to maintain at least a weekly blog…but..somehow…months have passed, and nothing’s been penned.

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.

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Brain Health

One of the great advantages to being a consultant and having time flexibility is the chance to attend daytime events. A couple of weeks ago I attended the Brain Health Symposium at San Francisco’s Commonwealth Club. Seven highly-qualified and fascinating guest speakers each presented about an area related to brain health. I’ll provide some of the highlights but I encourage you to visit the Commonwealth website to listen to a podcast if anything piques your interest.

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Hiking Poles

Today was a minor milestone; let’s call it a half-milestone. I purchased an assistive walking device. Brief history of my mobility:

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.

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