Wednesday, January 27, 2016

Radical Gratitude

In 2012, I posted an article on gratitude. In the article, I mentioned using a gratitude journal to help recognize moments that you are grateful for. Since then, I mentioned the gratitude journal three other times. I use the journal several times a day to recognize all the good in my life. I have always felt I am a positive person, but there are still times when griping and venting is just too easy of an outlet.

Today I read an article by David Cain on Radical Gratitude. It takes the notion of being grateful to a completely new level. 

“The idea sounds ridiculous, and even hopeless, but in practice it’s quite easy, and immediately rewarding. You just ask yourself, “Can I be grateful for this too?” In my short experience doing this, the brain has a way of coming up with good reasons why yes, you can.

This practice reveals a lot about our shortsightedness. We have a rather ridiculous tendency to believe everything is either strictly good for us or bad for us, and that we can reliably determine which one it is, in the instant that thing happens.”

I would encourage you to read the article by Mr. Cain. I plan to implement the idea and see what happens. In fact, this afternoon, something happened that I wasn’t too happy about. The minute I noticed my feelings of ‘this is bad’, I commented, “Wow, I am grateful for this happening because …” Just saying that changed my disposition, and, in turn, my outlook on the event.

I will probably fail several times a day trying to implement this new ‘radical’ way of viewing my world, but failure isn’t so bad. It opens the door to a greater understanding of what works and what doesn’t work. Yet, the idea is so contrarian as to how I currently operate, it will be interesting to see the results.

Tuesday, January 26, 2016

Constant Reminders

About ten days ago, I was in a bad position and had to really push, pull and strain to get up. In the process, pulled or did something to a groin muscle. It did not feel good then and the next day it was even worse. When I found myself sitting on the throne after that, I had to be extra careful not to do any more damage.

As those of you living with a neuromuscular disorder know, it is difficult not to use your abdominal and groin muscles to help push yourself to a standing position. Also, several exercises I perform are to strengthen, or maintain, the abdominal and groin muscles. Several times every day, these muscles have to be used to one degree or another.

Over the last few days, the pull, or tear, still tends to let me know it is not healed, but at least it is something I can live with. It is also a reminder that we have to consider our current situation and capabilities before performing certain acts that would not even be a consideration for someone without a progressive disorder. Leverage is how we accomplish much of what we do today, but even that has its limits.

On a side note, last week’s weather wasn’t a much fun even though I live in the South. We had a lot of rain, some snow, ice, and very cold temperatures, but nothing like the eastern seaboard experienced. The last Nor-Easter I was involved in was when we lived in Philadelphia. My wife and I shoveled four times one day and woke up the next morning to 50+ mph winds. With the new snow and drifts, we had another three feet to shovel. We were exhausted, sore and ready to move south. I hope our Eastern friends are dug out and waiting for spring. I know I am.

Photo: SnowTree030307__1_.jpg by Penywise

Monday, January 18, 2016

Yesterday – Today – Tomorrow

I love this quote from Melchor Lim. We can’t change the past, we are living in the present, but we do have some say about the future. 

I write about attitude quite a bit in this blog because there are times in our lives where we feel trapped. We begin to believe that our destiny is already written for us. Living with Kennedy’s Disease, a neuromuscular disorder, can have that effect. 

I know, at times, I have to be careful about feeling trapped with no escape. It happens when I am most vulnerable. Some capability is taken away from me, or some desire to do something is no longer an option. Out of frustration, I’ll forecast these negative thoughts into the future.

Fortunately, someone who reads this blog writes or comments and I realize that there is still tomorrow. If I become creative, perhaps a reasonable solution can be applied to the situation. At times, we are our own worst enemy. During these times, we forget who we are, and, all that we have triumphed over. 

Our lives didn’t end with Kennedy’s Disease. Yes, our world is constantly changing, but so was it before this condition entered our lives. Will we let the past pull us down, or the future raise us up? The choice is ours.
Photo: FromUp North

Friday, January 15, 2016

Actor Chew Chor Meng relates battle with Kennedy's Disease

For several years now I reported about Chew Chor Meng's discovery of, and dealing with, Kennedy's Disease (SBMA). Chew has written a book on his life including his struggle with Spinal Bulbar Muscular Atrophy. Since Chew is an international TV and movie star, his announcement that he has Kennedy's Disease brought greater attention to the condition especially in the Far East.

Local actor Chew Chor Meng releases biography on battle with incurable motor neuron illness

This New Paper, Singapore News article is written by Jocelyn Lee. She explains, "Chew said it was the love from his family and close friends that helped him through his darkest periods.

He said: "Sometimes my wife and I may have some squabbles here and there, but she is always there for me. I won't forget how I broke down and cried when I found out I was ill, and my wife told me that we would walk down this difficult path together. ..."

Photo: Singapore News

Thursday, January 14, 2016

More on CRISPR

A friend sent me this seven minute CBS video that does a good job of reporting what CRISPR is, and what are its potential benefits and concerns on its use. Genes and Dreams

CRISPR, gene editing technology, is light years ahead of other technology in this one area. Its potential uses are almost unbelievable. Yet, it is still in its infancy, and therefore needs strong parenting and further guidance to insure the technology is not abused.

Yet, for me, the hope grows stronger that a treatment, and potentially a cure, for Kennedy's Disease, SBMA, will become available in the not to distant future. It might not be available for my generation, but it sure appears it will be there for my children, and their children.

Photo: MIT News

Monday, January 11, 2016

Anyone for a game of Jenga?

In the right column of this page is the following explanation as to how I see “living with Kennedy’s Disease.”

"Life is a succession of lessons that must be lived to be understood." I have used the analogy that learning to live with Kennedy's Disease is like trying to cross a stream without getting wet. The only way is by using the stepping-stones provided (my chosen life's path). Each step is a "life experience" and I must come to terms with that experience (regain my balance) before being able to take the next step. It is a slow and often challenging journey, but I am finding it very fulfilling.

Now that I have difficulty safely walking, the analogy just doesn’t seem to fit my situation any longer. Recently I changed the photo at the top to a stack of stones. I felt the balancing act of creating a new world, a new way of living, was more relevant to my current situation. If I replace one stone with another and it doesn’t fit well, it could come crashing down.

The ability to live with Kennedy’s Disease, or any other progressive neuromuscular condition, requires constant adaption and acceptance as the disease progresses. For example, instead of requiring a cane or walker, you now require a scooter or wheelchair. Instead of getting by, it becomes a matter of constant adjustments to your daily life and routines. At some point, it is no longer about substituting or leveraging; it is about knowing when to ask for help, and how to let go of certain treasured capabilities. 

This morning I remembered playing the game of Jenga with family and friends. For those who haven’t played it, Jenga is a bunch of wooden blogs that are stacked about 12” tall at the beginning of the game. Players take turns and remove (pull out) a block. You don’t want to remove a block that causes the entire stack to crash. 

Living with a progressive condition is like playing Jenga – only you are the stack of blocks. When a block (capability) is removed, you have to adjust (adapt) to maintain your balance. At some point, you can’t make adjustments and you have to cling to the other blocks in hopes the entire stack (your self-worth and beliefs) is still strong enough to hold together. The minute you give up those essential elements of life, you risk crashing. As the condition progresses, more often, the other blocks are your family and friends. They step in (understand, adjust and adapt) to keep you standing. 

Treasure those other blocks that help support you when another block (capability) is weakened or removed.  

Wednesday, January 6, 2016

CRISPR is in the news again

Last year I posted four articles on CRISPR. The technology is new and fascinating. There appears to be endless possibilities as to what it might be able to do someday. For those of us living with a neuromuscular condition (including Kennedy’s Disease), it offers hope. 

In this latest article written by Kate Lunau for McLean’s Magazine, researchers have taken another step forward in this quest for a treatment or cure.

Gene editing spurs hope for muscular dystrophy cure
For the first time, a breakthrough technique called CRISPR has been used to treat a genetic disease inside a living mammal
Kate Lunau  January 4, 2016 

“Of the many diseases that afflict us, those that strike young children seem especially cruel. One is Duchenne muscular dystrophy, which typically appears before a child’s sixth birthday. Sufferers (almost always boys) struggle with muscle weakness, and have trouble walking. By 12, most will be in a wheelchair; few live beyond their thirties. There’s no cure, and it affects about one in 3,500 males born worldwide. Suddenly, with the arrival of a powerful gene editing technique, new treatments seem to be on the horizon. In three independent papers, published in the journal Science, U.S. scientists snipped out defective DNA in mice with the disease—the first time this tool, called CRISPR, has been used to treat any genetic disease inside a living mammal—and restored some of their muscle function. ...