ALS patients press FDA for quick access to controversial biotech drug – The Washington Post

This is a good even handed report about Genervon efforts including social media to win fast track FDA approval for GM604 for ALS. I’ve been pushing for faster review but Genervon hasn’t published any real data, just a public relations campaign which falls short of science. They’ve exasperated their clinical investigators at Columbia and Massachusetts General.

It wouldn’t take much for me to want to try it. But it will take something more than a prayer.

http://www.washingtonpost.com/national/health-science/als-patients-press-fda-for-quick-access-to-controversial-biotech-drug/2015/04/03/fb954618-d220-11e4-a62f-ee745911a4ff_story.html

ALS at the Oscars

Best actor was Eddie Redmayne for his portrayal of physicist and person with ALS Stephen Hawking in The Theory of Everything. I saw the movie twice and cried a river both times. First was at an ALSA screening in DC. Second was with family in Santa Fe. The movie focused on how life and love relationships and work go on despite this crushing disease.

Julianne Moore won Best actress for Still Alice. The character suffers from Alzheimer’s. Co-director Richard Glatzer has ALS and watched the ceremony from a hospital room, with respiratory complications. http://wp.me/p3lGN4-7v

Giving Thanks, Always, Even in Grief

Giving Thanks, Always, Even in Grief
Michael Gollin
December 2014

 

***

It wasn’t easy, but fourteen family members gathered at my brother’s home in Santa Fe for a joyous and spiritually meaningful Thanksgiving. After months of planning, and equipped as carefully as a Mount Everest expedition, I flew cross country with my wife, two of my children, a 250 pound power wheel chair, a bipap breathing machine, liquid food for my feeding tube, and a doctor’s note pleading for leniency from the TSA because of my disabilities caused by ALS. We had VIP treatment by the counter staff, security officers, and flight crew. Except for a delay in Washington caused by an early snow squall, the trip was fine.

My family is full of problem solvers. Brother Jim used a trailer to haul the heavy wheel chair, and made his adobe house handicap accessible using ramps and equipment generously sent, with encouragement, by Compassionate Care ALS.

Preparations for the feast were the mellowest we could recall. One reason was massage by Solar, a Brazilian shaman. When it was my turn, he didn’t work on my body, instead focusing on my spirit, which he believes surrounds our bodies and connects us to each other and everything else. It was his form of therapy and meant a lot to him. Although it was weird, it got me thinking that my body is getting weaker, but not my spirit. He was right, that I can strengthen my spirit even as my muscles atrophy.

I believe in both the physical and spiritual unity of nature. Our atoms come back as butterflies and flowers and rivers and people, and our memories and works live on. So why not our spirits, too, in an endless cycle?

Our Thanksgiving tradition is for each person to give thanks in remarks short or long. I thanked each family member for their remarkable traits, using my speaking app. I realized our Thanksgiving celebrations have become a quasi-religious ritual that we practice every year diligently to celebrate our love for each other and our good fortune, as descendants of immigrants in this great nation.

This year we were able to extend the celebration the next day with a spiritual retreat at the Upaya Center down the road. My family is not emotionally expressive. My terminal illness is the 800 pound gorilla and elephant in the room that no one really knows how to deal with. But through exercises involving meditation, writing, reading, and listening, Roshi (Zen master) Joan Halifax got us all openly sharing our experience of grief, and thereby, love.

Roshi Joan’s life work includes helping caregivers to apply Zen compassion in dealing with people who are terminally ill. She says when one family member is seriously ill, the whole family shares it. Her latest book, Being With Dying, is a gentle guide through this rough terrain. She had the 14 of us sit with her in chairs in a circle in the huge, simple sanctuary of planks and logs. We began by grounding ourselves and meditating about having strong backs and soft compassionate fronts.

Channeling my insight from the day before, I recited a prayer: Oh! Spirit that connects each of us to each other and our physical world, let us enjoy this adventure to find more meaning together.

Then out came paper and pens, and everyone was asked to write for five minutes, beginning: “What I have learned about grief is…“ We swapped and read the nano-essays, with authors unidentified. Remarkably it was almost impossible to know who wrote what. I guess we were writing about general truths.

Here is what I wrote.

What I have learned about grief is that it is a process of digesting trouble into something we can tolerate and even find strength and emotional nourishment. But it is easy to get stuck in shock denial anger or bargaining and not find our way to the peace of acceptance. It is a skill that can be mastered with help. I go through it every day at least once, sometimes more as I mourn the loss of yet another ability and contemplate mortality.  And I am refreshed and relieved when I come through it again, each time.

Some other remarks were:

All of a sudden an image, a memory, a place takes you back to an event with someone now gone. … The emptiness causes your heart to shudder and your eyes to tear and your breath to catch. Then you move on, remembering only the warmth that once was there.

 

Each variety of grief is different.

 

Grief… Is ever present in all life, lurking under a rock, present in a tingling partial way, or full on, in sobs of despair… Life fully without grief is a false goal but too much grief can overcome joy, and life itself. I… rationalize:… Dying is part of life… I sob quietly. And that is OK too. The sobs stop. Life goes on.

 

Devotion takes as many forms as grief, its counterpart. In devotion, we find salvation from the ravages of grief.

 

It makes me sad to see others I care about and love feel sad. It’s good to know what others are feeling and to be open with each other.

 

Grief doesn’t seem like a good thing, ever, but it has the ability to teach you about yourself and those around you.

 

It’s so much easier to distract yourself, and it feels much better. But it’s not something you can ignore forever. Something reminds you, …and then grief reaches in, pulls for you at high tide. It’s not just one feeling, either. It’s sadness, rage, confusion, hopelessness, nostalgia, desire, guilt, betrayal, everything that comes with disaster, pain, and tragedy.

 

There are certain kinds of grief which I do not believe I will survive… I know – somewhere in my DNA, the code that makes me human – I have the strength to survive it. So does everyone.

 

When grief enters my thoughts, nothing ever seems to be as it should be.

 

Everyone is different. Some people can’t cry sooner, but probably everyone does later. Crying is a therapy of its own sort.

 

Grief cannot be eliminated, only deferred or low-keyed or overlaid with other feelings and thoughts.

Then we wrote again. “Something I didn’t say was …” I wrote:

…how glad I am to hear the many points of wisdom and deep emotional expression from my family. I feel so very fortunate. 

Others wrote:

In the end it is only the love that matters, it’s the love that is the tracks we leave in the sand.

I think everyone is experiencing grief a little differently but there are also lots of similarities.

Almost everyone in the world grieves. But still, my own grief is not diminished by that awareness.

Getting one’s grief out for others to see is a liberating experience for both the grievers.

 

My closing prayer was: I pray for compassion, each for the other and for all of humanity and our world.

We all wrote and spoke about grief but there was lots of love in the family circle. Grief is universal and is yin to the yang of love. You don’t grieve unless you love. You can’t love without facing potential grief.

I told Roshi Joan when we planned this retreat that my family has hard shells. She told me afterwards that I was wrong. We all opened up. My mother has been suffering with tearfulness and visible grief about my illness for two years and now she feels not so alone. My father has tried to put on a happy face but now he is being more open, too. They both were able to speak about losing their parents and so many dear friends. My siblings, wife, children, and nephews and nieces all shared a fragile side. We all grew stronger, together.

On the Saturday we went to Chimayo, known for its hot peppers and the Catholic shrine. The church has a little room with a floor of dirt that is said to have miraculous healing powers. I drove my chair to the doorway and although I didn’t fit all the way in, I stood up and my brother sprinkled dirt on me.

According to that tradition, I am therefore cured. At least my spirit is.

reprinted at http://www.upaya.org/newsletter/view/2015/01/06

image

Chimayo

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Michael Gollin video interview
April 2013

We just uploaded these videos to YouTube. It’s nice to remember being able to stand and talk back then.  My current psyche was already formed. My first blog post was the same month.

The interview was recorded at MDA’s 2013 Scientific Conference, held April 21-24, 2013, in Washington, D.C.  The title was Therapy Development for Neuromuscular Diseases: Translating Hope Into Promise.

List of questions and videos:

1. What is your job and background?
2. How did you learn you had ALS?
3. What ALS clinic do you attend?
4. Do you think it is ironic that you researched muscles under an MDA grant in graduate school and you are now involved with MDA again, 35 years later?
5. What led you to attend this conference?
6. What’s it like to live with ALS?
7. How has your background affected the way you have dealt with the disease?
8. What do you think about MDA’s impact?
Do you have any final comments?

Michael Gollin MDA Interview Question 1: http://youtu.be/TclHk-0mdMw
Michael Gollin MDA Interview Question 2: http://youtu.be/DQj6SIgTEcE
Michael Gollin MDA Interview Question 3: http://youtu.be/j9hZT_dD1-c
Michael Gollin MDA Interview Question 4: http://youtu.be/gZT0ikmxRdQ
Michael Gollin MDA Interview Question 5: http://youtu.be/5AQ4dCiNjMU
Michael Gollin MDA Interview Question 6: http://youtu.be/SBlQ9gjGw3M
Michael Gollin MDA Interview Question 7: http://youtu.be/m_1zVjE4pWE
Michael Gollin MDA Interview Question 8: http://youtu.be/TNWTB_N-FRk

Michael Gollin MDA Video Interview

Richard Glatzer and Wash Westmoreland

Here’s an article about writer director team  Richard Glatzer and Wash Westmoreland who filmed Still Alice, about Alzheimer’s, after Glatzer’s diagnosis with ALS. He types on an iPad with his foot and uses synthetic voices to communicate.

UPDATE. Glatzer watched their Oscar win from a hospital, with respiratory complications.

Speech Assistant AAC app

This is my first endorsement of an app on my blog. Everyone who knows me knows I use Speech Assistant constantly on my Droid Maxx. My voice has become unintelligible due to ALS-caused atrophy of my tongue and diaphragm. The app was free and has no ads or complications. Using a voice purchased from CerePro for $2, my messages come across loud and clear.

Whenever I type something I may want to use again, I save it in one of the existing categories, or I make my own. Like Jokes. Or I send the message via sms or email. Friends, family, and co-workers are impressed.

I plan to use this little app and my phone to give testimony in the House on Tuesday in support of ALS research. Complicated and expensive devices are less capable and trustworthy than my ally, Speech Assistant AAC.

Never Give Up

Never give up
Michael Gollin
September 2014

My partner Justin Pierce is a great intellectual property lawyer. Before that he was an Army Ranger and Captain. We were talking shop in my office recently when I choked on my energy drink, consuming it too fast. Despite my coughs and gags he remained calm though attentive. I gave the one finger ‘wait’ signal and he did while my aide Ginah came in and helped.

As I was pulling myself together, I wrote on my phone that having ALS is sort of like being in the military. He pointed to the gift coffee cup on my desk that says “Never never never give up,” quoting Churchill.

Justin said he was remembering being tear gassed in basic training.  It was a surprise after a long hot humid run in Georgia. People coughed, vomited, fell down, passed out. The drill sergeant told them to get up and get moving, drink water, pour it on themselves, and never give up. So they did get up and started running again, and the sergeant was right, that got the tear gas out of their systems.

It was a perfect story, and as I caught my breath and cleared my throat, we turned back to talking shop — the day’s IP conference upstairs, his clients, our colleagues.   Back to normal.

There are many forces in life that make us want to give up. Sometimes it seems impossible to continue. But then there are also good people who give us the strength to get up and keep going.  And once you are moving again, everything is possible.