Friday, December 25, 2015

Happy Holidays

This holiday season is a time of reflection for me. I take time to review my “gratitude journal” to help remind me of all the blessings that I have experienced this year. It is also a time to be with family and friends to share the “Spirit” that is Christmas.

Please, take a moment to give thanks for the men and women who serve in our armed forces. Many cannot be with their families for the holidays. 

May you be safe … healthy … and feel the love… during this holiday season and through the coming year.

Wednesday, December 23, 2015

What makes a good life … Lessons on happiness

This afternoon I listened to a thirteen minute TED presentation by Robert Waldinger. His topic: What makes a good life? Lessons from the longest study on happiness. The findings were not earth-shaking, but they are interesting. For those of us living with a progressive neuromuscular disorder or any other chronic condition, the message is even more important.

“What keeps us happy and healthy as we go through life? If you think it's fame and money, you're not alone – but, according to psychiatrist Robert Waldinger, you're mistaken. As the director of 75-year-old study on adult development, Waldinger has unprecedented access to data on true happiness and satisfaction. In this talk, he shares three important lessons learned from the study as well as some practical, old-as-the-hills wisdom on how to build a fulfilling, long life.” 

If you prefer, there is also an interactive transcript. Give it a short and let me know what you think.

Sunday, December 20, 2015

The Annual Kennedy's Disease Conference was held in Chicago this year. The post-conference newsletter is now available for reading (PDF) online. There are several excellent articles on current research as well as plenty of conference news. I have copied a couple of the articles that might be of interest.

Research News at the 2015 KDA Conference
Ed Meyertholen, Ph.D.
KDA Board Member, and Scientific Review Board Member
Assistant Dean, Georgetown College, Georgetown University, Washington, DC

The annual conference of the Kennedy’s Disease Association was held this past October in Chicago. We are lucky in that we have a group of researchers that not only are dedicated to finding a treatment for KD but also able to find time to present their most recent research at the meeting. In addition, our meetings also allow for the interaction between the researchers and the conference attendees. This is by far the most rewarding part of the conference for me personally.
As is typical, researchers who came to the meeting were from most of the labs in the USA and Canada that make major contributions to KD research as well as some from across the pond. The research described at the meeting is generally unpublished work and as a result, is not usually ready for broad distribution. For me, however, one of the more interesting and encouraging developments this year actually was not a part of our conference and did not even deal with KD but its close cousin, Huntington’s Disease (HD). A new clinical trial using something called anti-sense oligonucleotides (ASO) had started this summer. Without going into excruciating details, ASO’s prevent the production of the protein that causes HD and as a result, the symptoms of HD in mice were reduced with the injection of this ASO. The success of these experiments in mice led to the formation of the clinical trial to use ASO’s in humans. Experiments using ASO’s against the androgen receptor (the protein affected in KD) in mice have also shown to be effective in relieving symptoms of KD. Thus, if this treatment works in HD patients, it should work in KD as well.
The KDA Conference is also the site of the notification and presentation of the research grants funded by the KDA. This year, thanks to your donations and fund raisers two grants were awarded at the conference, one to Dr. Miltiadis Paliouras (principle investigator) and Dr. Lenore Beitel (co-applicant) who are Assistant Professors at McGill University; and the other to Dr Constanza Cortes, a post-doctoral researcher in Al La Spada’s lab at UC-San Diego. The competition for the grants was extremely fierce this year as a record number of proposals were submitted – all of them of excellent quality.

Exercise Research 
Joseph A Shrader, PT, C.Ped 
Senior Clinical and Research Physical Therapist, Clinical Research Center, NIH

Recent evidence suggests that functional exercises aimed at improving functional tasks such as
sitting up, rolling over, sit-to-stand, and stepping up an 8-inch step were well tolerated by persons with spinal and bulbar muscular atrophy when supervised by rehabilitation and/or nursing professionals. Overall, strength, balance, function, and quality of life did not differ between those who received the exercise versus stretching (control group), however, those with relatively low baseline function improved their functional profile and those with relatively high baseline function improved their general activity level, compared with the control group. More research is needed to help optimize exercise intensity, mode, frequency and duration for individuals with KD. General recommendations for people with KD include attempting to incorporate daily physical activity into your lifestyle, along with good nutrition and sleep habits. If you experience falls, fear of falling, leg weakness, requirement of assistance or assistive devices for standing and walking, it is recommended that you first be examined by your primary doctor, neurologist, or physiatrist to discuss contraindications and exercise goals. It is also recommended that exercises be initially prescribed and monitored for appropriate post-exercise recovery by a physical therapist, until a safe and sustainable self-directed program can be assured.

NIH does not endorse or recommend any commercial products, processes, or services. The views and opinions of NIH authors do not necessarily state or reflect those of the U.S. Government, and they may not be used for advertising or product endorsement purposes.

Wednesday, December 16, 2015

Your story is my story

Yesterday I received an email from a man who was recently diagnosed with Kennedy's Disease. He asked for my thoughts on how long he could work (a physical job) and if he should continue to run (his passion). After replying, I reread my response and decided to share some of these thoughts with you.

Your story is my story, as well as the story of so many others with our condition. We all have a learning curve, and I continue on that path, wondering, asking 'what if', experimenting, and all the while hoping for a treatment that will arrest, or at least slow, this mutant carnivore of motor neurons and muscles living inside me.

Advice is cheap, so I will just lay out some thoughts for your consideration.
  • Learning to live with Kennedy’s Disease is a daily process of adapting, leveraging, and substituting, 
  • Develop a close working relationship with a doctor that you trust - someone you can confide in. 
  • Work as long as you can, but be smart and safe about it. 
  • Run like the wind and feel the joy of your body performing like it is supposed to. 
  • When you can no longer safely run, jog or walk. Just stimulating the muscles and motor neurons is healthy and fulfilling. 
  • Stimulate your mind every day - it is a 'muscle' that will help you through the tough times. 
Push yourself, but not too far. Over-use of the muscles (pain, cramping, weakness and extreme tiredness) is the signal that you overdid. Learn from it. As the condition progresses, use the 70% rule. It has been a good guide for me in my senior years.
  • Embrace your spirit, but listen to your body. 
  • Don't give up on your dreams, but temper them with realism. 
  • Live for today, but plan for tomorrow - because eventually tomorrow arrives. 
  • Pessimism and fear are cancers of the mind - don't allow them to gain control of your life. 
  • Frustrations, falls and injuries are part of our growth process - learn from them. 
  • Become comfortable asking for help - there are times when you will need it. 
  • Inability is not the same as giving up - adapting to your capabilities is part of the growth process. 
  • Every day find moments to be thankful for the life you have been given. 
And, most importantly, always remember … YOU ARE NOT ALONE!