Monday, September 25, 2017

It's Never too Late

The quote below is taken from Eric Roth who adapted the script for the movie, "The Curious Case of Benjamin Buttons." The scene is "The letter to Caroline." I have changed a few words to make it more focused for my message about 'LIFE.".

     It’s never too late to be whoever you want to be.
     There's no time limit. Start whenever you want.
     You can change or stay the same.
     There are no rules to this thing.
     You can make the best or the worst of it.

     I hope you make the best of it.
     I hope you see things that startle you.
     I hope you feel things you never felt before.
     I hope you meet people who have a different point Of view.
     I hope you live a life you're proud of, and if you're not,
     I hope you have the courage to change it.

The above is a powerful statement of our ability to make a difference in the world. The Kennedy’s Disease Association and its website is one example. The Kennedy’s Disease Facebook Groups are other examples. There are also many other individuals who found ways to help those of us seeking answers or needing hope. And, we all need hope.  

The good news…

It is never too late—that is the important message. It gives us hope. 

FYI - you might enjoy reading this blog post on it never being too late

Saturday, September 23, 2017

Feel Good Drug

I guess you could say I am addicted. First thing every morning I need to have it. Afterward, everything is good—
Real Good

Now I can face the day.

Every evening, I need another fix to 'smooth things out'. Now I am ready for a good night’s sleep.

If you know me or read my blog regularly, you know I am talking about my daily exercise routine. When I exercise, my body releases chemicals called endorphins. “Endorphins are among the brain chemicals known as neurotransmitters, which function to transmit electrical signals within the nervous system. They are morphine-like chemicals produced by the body that help diminish pain while triggering positive feelings. Endorphins are sometimes referred to as the brain's "feel-good" chemicals, and are the body's natural painkillers.”(1)

For a long time I did not know meditation also releases endorphins. I guess that is why I became hooked on meditation many years ago. I also read chocolate and chili peppers will release them. Who would have ‘thunk it’?

I do not mind being called an “endorphin junky.” I could be called a lot worse.

Once again, it shows that we need to be stewards of our mental, emotional and physical health.

Living with Kennedy's Disease requires me to be at my best every day. I had my fix for the day. How about you?


Sunday, September 17, 2017

Unexpected Benefit

In June, I noticed my pinky finger on the left hand felt numb. I tried several exercises, but the sensation was still there. About a month later, I noticed the right pinky finger was a little more numb. It was not as pronounced as the left, but still noticeable.

For several years, the bottoms of my feet and toes have been numb or tingly. I tried different techniques to stimulate the nerves, but nothing seemed to work. In early August, the feet were particularly bad. One evening, I used my hands to massage my feet. The feet were more sensitive than I thought they would be when I performed a deep tissue massage. At times, it was slightly painful. Yet, they felt better afterward.

I kept up the evening massages and noticed a positive pronounced difference in regards to sensations. The tingling and numb feeling is barely noticeable. The toes also have more feeling. By the end of August, something else became apparent. I no longer had the numb feeling in the pinky fingers on both hands.

It is mid-September and the bottoms of my feet and my toes are remarkably better. I have not experienced the numbness in my fingers for at least three weeks. I will continue my evening massages and let you know if anything changes. But, for now, I like the results.

Monday, September 11, 2017

Patients with Mesothelioma

I don't normally post topics other than those related to progressive motor neuron conditions and resources, but Virgil Anderson, a cancer survivor, asked if he could post something on my blog. Since cancer has become an intruder in the lives of family and friends, I decided to post his article,

Resources for Patients with Mesothelioma

Mesothelioma is a terrible type of cancer because it is aggressive, spreads quickly, and is often diagnosed in the later stages, when treatment options are limited. But getting a mesothelioma diagnosis does not have to come with no hope. There are resources available for those who need them, and these include medical, legal, and financial resources.

Medical Resources for Mesothelioma
Mesothelioma is a cancer that most often attacks the pleura, the two layers of tissue surrounding the organs of the chest cavity. It is most commonly caused by exposure to asbestos and has a long latency period, so that by the time a person has symptoms that can be diagnosed, the cancer is already well developed and in many cases even metastatic.

This is a rare cancer, and one that is difficult to treat, so finding the best medical resources is crucial. A diagnosis may start with a patient’s general practitioner, but consultation with a specialist is necessary to get the best treatment. An online search can pull up mesothelioma specialists, but certain medical centers also provide great resources. Places like the M.D. Anderson Cancer Center in Houston and the Pacific Mesothelioma Center in Los Angeles are home to experts in the treatment of this disease.

Legal and Financial Resources
Many people who developed mesothelioma did so because they were exposed to asbestos in the workplace without knowing they were being put at risk. This means that many employers, including the U.S. military, as well as manufacturers of asbestos materials, can be blamed and sued for mesothelioma diagnoses.

A legal team that specializes in mesothelioma and asbestos can be a great legal resource to help patients decide if they have a case to make and then to file lawsuits that will win them settlements. In addition to lawsuits, mesothelioma patients may have access to asbestos trust funds, funds set up by companies to pay for future cases of mesothelioma in their past employees.

Resources for Veterans
Veterans of the U.S. military, especially those from the Navy, may have suffered more asbestos exposure than any other group of people. Through the U.S. Department of Veterans Affairs (VA), these mesothelioma patients can find specialized resources. Veterans can apply for VA compensation for asbestos exposure and must meet certain requirements. These include being exposed to asbestos during military service and being diagnosed with mesothelioma or another illness caused by that exposure.

How Can Help
There are many resources for patients with mesothelioma, and it can get confusing. offers one consolidated resource with information about medical treatments, financial assistance, asbestos trust funds, resources for veterans, and more. When you contact our site, we will send free information and can help connect you to legal experts, patient advocates, and other experts who will get you the help you need.

Monday, September 4, 2017

For Italians with Disabilities, a Place in the Sun

This morning I was sitting in the sun with my beagle on one side and spitz on the other. Both wanted equal time with my attention. The temperature was 65 degrees with low humidity and not a cloud in the sky. Life can’t get much better than this.

When I returned to my office, I saw this New York Times article by Elisabetta Povoledo on Italian beaches. You can read the entire article by clicking on the title below.

It reminded me of why we quit going to the beach. We found most beaches not accessible to the handicapped. Just getting down to the beach can be a problem. Once you are there, you still need a way to navigate across the sand. Fortunately, I now understand some beaches are more accessible and equipment rentals are available. Yet, most beaches still do not have adequate facilities for those of us with progressive disorders that cannot be easily transferred.

ForItalians with Disabilities, a Place in the Sun

“FOCENE, Italy — On a recent summer morning, one lido on the beach at Focene, west of Rome, was bustling. Italians of all ages and sizes sizzled on sun-bleached chairs. Children splashed happily among the waves, and a group of senior citizens exercised (gently) to a mambo beat.

But there were also visitors rarely seen on other Italian beaches: people with disabilities being eased into the water on special chairs with fat tires, with the help of family members and volunteers.

This summer, like all summers, Italians thronged the thousands of resorts and lidos that pepper the country’s coastline, staking out swatches of sand among colorful umbrellas arranged in cramped rows.

It’s a time-honored national pastime enjoyed by millions. But the seaside establishments that accommodate people in wheelchairs are few and far between….”

Saturday, September 2, 2017

Swallowing markers in spinal and bulbar muscular atrophy

This article was posted on August 17. I have been busy engaged in publishing my latest book, so I did't have a chance to review it before today. Those of us living with Kennedy's Disease often experience problems with swallowing and choking. This article explains the research findings on KD patients and swallowing.You can read the entire article by clicking on the header below.

Swallowing markers in spinal and bulbar muscular atrophy

Swallowing markers in spinal and bulbar muscular atrophy.

Ann Clin Transl Neurol. 2017 Aug;4(8):534-543

Authors: Banno H, Katsuno M, Suzuki K, Tanaka S, Suga N, Hashizume A, Mano T, Araki A, Watanabe H, Fujimoto Y, Yamamoto M, Sobue G


OBJECTIVE: We examined the characteristics of dysphagia in spinal and bulbar muscular atrophy, a hereditary neuromuscular disease causing weakness of limb, facial, and oropharyngeal muscles via a videofluoroscopic swallowing study, and investigated the plausibility of using these outcome measures for quantitative analysis.

METHODS: A videofluoroscopic swallowing study was performed on 111 consecutive patients with genetically confirmed spinal and bulbar muscular atrophy and 53 age- and sex-matched healthy controls. Swallowing of 3-mL liquid barium was analyzed by the Logemann’s Videofluorographic Examination of Swallowing worksheet.

RESULTS: Of more than 40 radiographic findings, the most pertinent abnormal findings in patients with spinal and bulbar muscular atrophy, included vallecular residue after swallow (residue just behind the tongue base), nasal penetration, and insufficient tongue movement (P < 0.001 for each) compared with healthy controls. Quantitative analyses showed that pharyngeal residue after initial swallowing, oral residue after initial swallowing, multiple swallowing sessions, and the penetration-aspiration scale were significantly worse in these patients (P ≤ 0.005 for each) than in controls. ...

There is another article on a 2014 study on tongue pressure in patients with KD. It can be found here:

Tongue pressure as a novel biomarker of spinal and bulbar muscular atrophy.