Tuesday, January 31, 2012

Reprogramming Skin Cells Into Induced Stem Cells

Ed, our resident biology guru, sent me the following article from BBC News (http://www.bbc.co.uk/news/health-16788809).  He cautions that this research is still in its infancy, however, in regards to a potential treatment for Kennedy’s Disease. 

“As is always the case with stem cell research, one needs to understand that while this is an important piece of work, we are still years (and years) away from therapy.  In any case, I have attached the actual paper.  This is also interesting as several of the attendees at the 2010 KDA conference donated skin cells for just such a project (and I believe that NIH has something similar going on).”

Skin transformed into brain cells

By James Gallagher, Health and Science Reporter, BBC News

Stem Cells - Neural Skin cells have been converted directly into cells which develop into the main components of the brain, by researchers studying mice in California.

The experiment, reported in Proceedings of the National Academy of Sciences, skipped the middle "stem cell" stage in the process.  The researchers said they were "thrilled" at the potential medical uses.  Far more tests are needed before the technique could be used on human skin.

Stem cells, which can become any other specialist type of cell from brain to bone, are thought to have huge promise in a range of treatments. Many trials are taking place, such as in stroke patients or specific forms of blindness.

One of the big questions for the field is where to get the cells from. There are ethical concerns around embryonic stem cells and patients would need to take immunosuppressant drugs as any stem cell tissue would not match their own.

An alternative method has been to take skin cells and reprogram them into "induced" stem cells. These could be made from a patient's own cells and then turned into the cell type required, however, the process results in cancer-causing genes being activated.

Direct approach

stem cellThe research group, at the Stanford University School of Medicine  in California, is looking at another option - converting a person's own skin cells into specialist cells, without creating "induced" stem cells. It has already transformed skin cells directly into neurons.

This study created "neural precursor" cells, which can develop into three types of brain cell: neurons, astrocytes and oligodendrocytes.  These precursor cells have the advantage that, once created, they can be grown in a laboratory into very large numbers. This could be critical if the cells were to be used in any therapy.

Brain cells and skin cells contain the same genetic information, however, the genetic code is interpreted differently in each. This is controlled by "transcription factors".

The scientists used a virus to infect skin cells with three transcription factors known to be at high levels in neural precursor cells.  After three weeks about one in 10 of the cells became neural precursor cells.
Lead researcher Prof Marius Wernig said: "We are thrilled about the prospects for potential medical use of these cells.  We've shown the cells can integrate into a mouse brain and produce a missing protein important for the conduction of electrical signal by the neurons.  More work needs to be done to generate similar cells from human skin cells and assess their safety and efficacy."

Dr Deepak Srivastava, who has researched converting cells into heart muscle, said the study: "Opens the door to consider new ways to regenerate damaged neurons using cells surrounding the area of injury."

Sunday, January 29, 2012

Pencil neck

pencilneck-1 I am getting a pencil neck. The atrophy in the neck region is now evident. I didn’t notice it a couple of years ago, but it has become more prominent within the last nine months. And, with the atrophy I noticed that many evenings and occasionally even in the afternoon my neck muscles just do not want to hold up my head. Sometimes I have cramping or pain, but most of the time it is just weakness that I experience.

I have seen this condition in several others with Kennedy’s Disease and my brother has experienced the problem for the last ten years or so. For some reason I thought I was immune. I continue to perform neck exercises every day and they seem to help, but something has happened recently that I cannot explain.

neck muscles1 I attribute some of the problem to working too many hours on the computer. I know that several days this winter I spent more than four hours at the PC without any breaks. A few days I probably spent close to eight hours working at the PC. I found if I spend less time at the computer and schedule more breaks, the neck fatigue is not evident or not quite as bad. This last week I spent an hour or so mid-afternoon in my recliner using a neck pillow (dog-bone). It seemed to help.

My questions for you are:
1. Are you having any neck weakness issues?
2. If so, is there anything that you have found that helps?

I look forward to hearing from you.

Thursday, January 26, 2012

Follow-up on earlier article on RNA defect repair

Last Thursday I published information on some recent Kennedy’s Disease research that looked promising even though it had not been verified by another lab.  The article, “Scientists identify compound that can help repair toxic RNA defect,” was interesting even though I didn’t understand most of it.

I asked Ed, our resident biology professor, to review the study and comment on it when he had a chance.  Below are Ed’s comments.

It is a different approach overstates the case with regard to treatment of the various CAG repeat diseases.

As you may remember, it is generally thought that the symptoms of Kennedy’s Disease (KD) (and other CAG diseases) is due to a misfolded protein and that the cells no longer have the ability to remove these proteins and this somehow causes cells to die.  This paper is based on a different proposed mechanism for cell death.  The problem is not the protein but the mRNA.  To make a protein, one needs the instructions on the order of amino acids for that particular protein.  Just like a dictionary tells you the order of letters in a word, DNA (our genes) tells you the order of amino acids in any protein.  To make a protein, one therefore needs these instructions.  Cells get the instructions by looking up the instructions for a protein (as you would look up a word in the dictionary) and makes a copy of the needed instructions.  This copy is made out of RNA is known as m (or messenger)RNA (see * below).  The experiments in this paper are based on the notion that it is actually the mRNA that is somehow causing the cell death and not the resultant protein.  The idea is the mutant mRNA binds to a protein called MBNL-1 and it is the sequestering of this protein that ultimately leads to cell death.  They found a way to prevent the mutant mRNA to bind to MBNL-1 and thus, if this is indeed the reason for cell death, block cell death.  BTW, they did not show that this chemical stops cell death just the mRNA-protein interaction.  Since it is not generally accepted that the mRNA is at fault in KD, it really is a stretch to call this a breakthrough (or even an advancement) that will lead to a treatment.

This is a difficult paper for nonscientists to discuss as the suppositions are not generally accepted and they really did not show any cell saving affects - yet the site you forwarded seems to indicate a major breakthrough.  As you may know by now, I am not a fan of such publicity as it leads to unfulfilled and unrealistic hope.  The work may end up being very important but we are a long way from it being helpful to us and that is certainly not clear in this press release.

(*) From Wikipedia:  Messenger RNA (mRNA) is a molecule of RNA that encodes a chemical "blueprint" for a protein product.  mRNA is transcribed from a DNA template, and carries coding information to the sites of protein synthesis: the ribosomes. Here, the nucleic acid polymer is translated into a polymer of amino acids: a protein. In mRNA as in DNA, genetic information is encoded in the sequence of nucleotides arranged into codons consisting of three bases each. Each codon encodes for a specific amino acid, except the stop codons, which terminate protein synthesis. This process requires two other types of RNA: Transfer RNA (tRNA) mediates recognition of the codon and provides the corresponding amino acid, whereas ribosomal RNA (rRNA) is the central component of the ribosome's protein-manufacturing machinery.

Tuesday, January 24, 2012

Eleven Month Dutasteride Update

avodart The fifteenth was the eleventh month anniversary of taking dutasteride. I continue to feel good and am having no known side effects. As I mentioned in an earlier post, my doctor believes I should continue taking the medication.

The biggest change this last month was the reduction in my long exercise routine.  I was no longer enjoying it as much as before (a little bored). This last month I averaged 97 minutes for my long exercises; down from 120 minutes. I have seen no change in strength because of the reduction, but I am enjoying the program much more again. I am looking forward to exercising again and when I finish I feel good about it. My short routine continues to be 15-20 minutes on the in-between days.

As I mentioned in an earlier post, I came down with some kind of bug (cough, chills, weakness and loss of appetite). I was over it in about five days, but a slight weakness remained for another week or so. It was especially noticeable in the legs. It felt good to wake up one morning and not notice the weakness.

Results to Date
So, after eleven months, I believe I am no weaker than I was a year ago and maybe even a little stronger. Or, playing the role of the contrarian, if I am weaker, it is not noticeable (and that is fine with me).

After I write my one year anniversary review next month, I plan on only writing quarterly dutasteride reviews or if there are any significant changes.

NIH Exercise Trial
brain-exercises I am also hoping that the NIH clinical trial on exercise is completed this year and they have some positive news on what exercises are the most appropriate and beneficial for anyone living with Kennedy’s Disease. I am not saying I will change my routine, but if there is a significant advantage to making a change I am open to suggestions.

Monday, January 23, 2012

“Life is often out of our control”

I read this article today at Scotsman.Com because Kennedy’s Disease was mentioned. The title was: On Christmas Day I smiled but I couldn’t help but look at Vanessa and wonder if this was her last Christmas - it was heartbreaking.

The story is about a couple’s daughter who was diagnosed with cancer. The subject struck too close to home.

cancer-ribbon The article caught my interest from the beginning with this lead: The only hope Connie and Chris Riddle have of saving their daughter from a rare form of cancer is treatment in the USA costing £500,000. Maria Croce meets a couple determined to give their little girl the best chance they can.”

I have mentioned before that there are far worse things than Kennedy’s Disease and cancer is always near the top of the list. And, even worse, it attacks your child. “Just a few days earlier life had seemed to be getting back to normal. It looked like Vanessa had beaten a rare form of childhood cancer, neuroblastoma, after extensive treatment, because she’d been in remission for 16 months. But just before Christmas a scan revealed the cancer was back.”

“Connie had already realized the fragility of life after her father was in 1995 diagnosed with muscle-wasting Kennedy’s Disease and spent his later years in a wheelchair until he died, four years ago, at the age of 72. It is completely unrelated to Vanessa’s cancer – but Connie discovered she is a carrier of the hereditary disease that only affects males in adulthood. “I chose not to have the tests when I was pregnant with Olivia or Vanessa,” she says. “I thought even if I’d discovered I was carrying a baby boy with the condition I would still have had him.”

Yes, much of our life is out of our control

Those of us living with Kennedy’s Disease know that some things in life are just totally out of our control. At the same time, there is hardly anything worse than the totally helpless feeling that overwhelms your body, mind and spirit when your child is diagnosed with cancer. I know, because at two years old, my son was diagnosed with an aggressive (malignant) brain tumor that was strangulating his upper vertebras causing seizures.

Fortunately, they caught it early, we had a great neurosurgeon, and after surgery and 33 massive cobalt treatments the doctors felt they got it all. Five years later he was given a clean bill of health. My son is now forty-one and even though he doesn’t remember much about that time in his life, it is still a vivid memory to me.

Thursday, January 19, 2012

Scientists identify compound that can help repair toxic RNA defect

I saw this article and the news release yesterday.  I am hoping Ed, our resident research guru, will have some comments on the applicability of this research in helping to find a treatment for Kennedy’s Disease.

Published on January 18, 2012 at 12:00 AM
Research - lead Scientists from the Florida campus of The Scripps Research Institute have identified a compound that can help repair a specific type of defect in RNA, a type of genetic material. The methods in the new study could accelerate the development of therapeutics to treat a variety of incurable diseases such as Huntington's disease, Spinocerebellar ataxia, and Kennedy disease.

The new study, published January 17, 2012 in an advance, online edition of the journal ACS Chemical Biology, describes a method to find compounds that target defective RNAs, specifically RNA that carries a structural motif known as an "expanded triplet repeat." The triplet repeat, a series of three nucleotides repeated many more times than normal in the genetic code of affected individuals, has been associated with a variety of neurological and neuromuscular disorders.

"For a long time it was thought that only the protein translated from this type of RNA was toxic," said Matthew Disney, an associate professor at Scripps Florida who led the new study. "But it has been shown recently that both the protein and the RNA are toxic. Our discovery of a small molecule that binds to RNA and shuts off its toxicity not only further demonstrates that the RNA is toxic but also opens up new avenues for therapeutic development because we have clearly demonstrated that small molecules can reverse this type of defect."

In the new research, the scientists used a query molecule called 4', 6-diamidino-2-phenylindole (DAPI) as a chemical and structural template to find similar but more active compounds to inhibit a toxic CAG triplet repeat. One of these compounds was then found effective in inhibiting the RNS toxicity of the repeat in patient-derived cells, which demonstrated an improvement in early-stage abnormalities.

"The toxic RNA defect actually sucks up other proteins that play critical roles in RNA processing, and that is what contributes to these various diseases," Disney said. "Our new compound targets the toxic RNA and inhibits protein binding, shutting off the toxicity. Since the development of drugs that target RNA is extremely challenging, these studies can open up new avenues to exploit RNA drug targets that cause a host of other RNA-mediated diseases."

Source: http://www.scripps.edu/news/press_releases/20120117disney.html

Tuesday, January 17, 2012

No matter how old we are ...

… we still need our shots.

Jodi Helmer wrote in the Costco Connection a few months ago a good article on the need for adult vaccinations. The article said that approximately 50,000 adults die each year in the United States from vaccine-preventable diseases. Deborah Wexler, M.D., executive director of the Immunization Action Coalition, commented, “There is a lack of awareness about the need for adults to be vaccinated and which vaccines are required.

Three kinds of vaccines:

  1. Childhood Vaccines
  2. New Vaccines
  3. Age-appropriate Vaccines

Childhood Vaccines:

Booster shots are often needed for MMR, tetanus/diphtheria/pertussis, meningococcal disease and pneumonia mococcal disease. It is also possible that an important childhood immunization, i.e., chicken pox, was missed. The good news is that if you cannot find your childhood medical records (an how many people can), there is no harm in having the vaccination again, says Raymond Strikas, M.D. For example, adults should have a tetanus booster every ten years.

New Vaccines:

The article also commented that there is a good chance that new vaccines have been developed or recommended for adults since your last immunization. It used the example of hepatitis B because it was not part of the last schedule in 1991. The zoster vaccine for protection against shingles has only become available in the last five years.

Age-appropriate Vaccines:

Ms. Helmer emphasized that being up to date on immunizations is especially important as we get older because our immune system weakens. The zoster vaccine is recommended for all adults over 50 as well as the MMR vaccine. Anyone over 65 should have the pneumococcal immunization to protect against bacterial pneumonia. For any of us with Kennedy’s Disease, it is especially important to have the pneumonia and flu shots because of our condition.

Dr. Strikas believes, “There is no reason to risk illness, possible hospitalization and sometimes death when there are effective vaccines available.

And, don’t forget to ask for a sucker afterwards.

Monday, January 16, 2012

Today I am thankful for what little strength I still have.

weak feeling Last Friday I had a good 100 minute long morning exercise program. I did not notice anything really different until early afternoon when I felt slightly weaker. I thought that was a little strange, but didn’t think anything more about it. By evening I was feeling even weaker and began to wonder what was happening. My neck was very weak and holding it up became a burden.

I woke up Saturday morning feeling even weaker. As the day went on I had more problems just performing ordinary tasks. By evening my legs and neck were very weak and my arms were somewhat weaker.

Sunday morning I felt a little stronger so I went about myweak morning routines. By 10:00 I was in my recliner with a blanket and fell asleep around 10:30. After a two hour nap I felt a little better so I took my dog for his walk. Immediately after returning I was back in my chair with a blanket and took an hour long nap. The naps seemed to help. My fever broke and I felt a little stronger by bedtime. The only benefit to this was that I was able to watch a lot of football this weekend without feeling guilty.

I woke up coughing several times during the night, but felt better this morning. I performed a 95 minute workout and it went very well this morning. It is noon and my muscles are beginning to ache a little, but I still feel so much better than the last couple of days. I have no idea what it was that caused the fever, extreme weakness and coughing, but I believe I am on the mend again.

Thankful cards Yes, I complain about my weakness as this disease progresses, but today I am thankful for what little strength I still have. You never know how much you appreciate something until you lose it.

Thursday, January 12, 2012

The extremely excruciating time needed for development of a treatment

mouse models Quest Magazine had another great article this month. “Why Does It Take So Long to Go from Mouse to Man” explains why the pace of research seems to be unreasonably slow. I would recommend you read it because it gives a good layman’s explanation of the process. Many of the steps mentioned in the process have been discussed at the KDA conferences by the researchers, but this article lays out the steps, requirements and checks in the process of taking a treatment from mouse model to market.

In 2010 I wrote two articles on the subject of why everything takes so long within the research community.
· “The Clock is Ticking, So What is the Holdup”
· “The Clock is Ticking – Another Perspective”

And, in several other articles I mentioned delays or timelines that often seem ridiculous to those of us living with a progressive disease. I believe a prerequisite for researchers is an abundance of patience ... something I do not possess.

Dr. Fischbeck at NIH has been a source of hope for many of us with Kennedy’s Disease. His perspective reflects one of infinite patience. He has mentioned more than once the benefits of taking small steps forward rather than rushing something and then finding out it doesn’t work or the side effects are serious. He has also discussed some of the FDA requirements that cannot be shortened for several reasons, but primarily for safety concerns.

Read the article. It won’t change anything other than perhaps your perspective.

Tuesday, January 10, 2012

What if I could promise you a cure?

60 minutes Sunday night I watched a ‘60 Minutes’ investigation called, “Stem Cell Fraud.” It was a follow-up on a two part report that they did in 2010.

All of us living with Kennedy’s Disease remember when we were told by our doctor there is no treatment or cure for this disease. And, for people who have little more than hope to live for, a promise of a potential treatment or cure means everything. And, that is the reason we should always error on the side of caution.  I am aware of one man with Kennedy’s Disease that has been taking stem cell injections for over a year in hopes of reversing the progression.

Stem Cell research has come a long way in the last ten year. It isstem cell fraud still something, however, we cannot hang our hat on today, but there is promise for the future. I can understand that at some point desperation sets in and a person is willing to try anything in hopes that something … anything will work.

Unfortunately, there are those criminal elements that pray upon these individuals and their families. They are selling ‘hope’ in a bottle or in an injection. The ’60 Minutes’ investigations (the video links are below) exposes this seedy world where promises are made and thousands of dollars are exchanged in the hope that something will work. The reporter comments in the video that if you search the internet, you will find dozens of web sites that claim they have cures for almost every disease.  The 2010 investigation included people living with ALS who went to Mexico for stem cell treatments. The 2011 investigation follows parents whose son has Cerebral Palsy. Both reports are around fifteen minutes long and well worth the viewing.

snake oil Ed Meyertholen, the KDA’s resident research guru, has been cautioning us who are living with Kennedy’s Disease to not fall for the stem cell scam because there is currently no treatment or cure. 

Your neurologist, the FDA and the National Institute of Health (NIH) are excellent resources when you are considering alternative forms of therapy. Some forms might be beneficial while others may be harmful. Discuss the potential opportunity with these professionals before embarking upon any new treatment.

And, remember, if it sounds too good to be true;

it probably is!

The ‘60 Minutes’ Investigation called “Stem Cell Fraud”
The ‘60 Minutes’ 2010 two part video on a Stem Cell investigation

Sunday, January 8, 2012

My annual checkup

I had my annual checkup this last week. My doctor commented he would never get rich off me because I only see him once a year.

The Good News:

I am as healthy as a horsehealthy-horse

The Bad News:

I just can’t run like one

CPK is good:

My CPK is up slightly this year (230), but is still much better than the days where it ran 800-1,000. This is positive news since I increased the number of reps and length of my exercise program last year. It appears it is not doing any harm.

blood-test I had a complete blood workup.  Everything looks good including my HDL, LDL and cholesterol as well as my blood pressure and pulse. We discussed my neuropathy in my lower legs and feet. My doctor commented that when I was ready, we could discuss possible treatments that might help.


And, based upon the results over the last eleven months, I willavodart continue taking dutasteride this year. In reviewing my current condition versus last year, it appears I am the same or better except for the occasional neck weakness I have encountered this year.

Not bad for a guy 65 ‘39’ years old who is going to be a great grandpa any day now.

Thursday, January 5, 2012

What “living with” means to me

cat sunshine The word ‘living’ has an abundance of meanings, but when I write “living with Kennedy’s Disease” I mean “the pursuit of a certain lifestyle.” In other words, you are still enjoying life as best you can considering your current situation.

Often when a man is first diagnosed with Kennedy’s Disease he goes through the denial and the ‘why me’ phases. If he cannot come to grips with the reality of his situation, he might shut down ... partially give up. In my opinion, this is one of the worst things that can happen to him.

This blog is named, ‘Living with Kennedy’s Disease’ for a reason. It is important to find a level of acceptance that allows you to continue to enjoy the life you have been given. Many times I have mentioned the blessing and curse of a slowly progressive disorder. The curse is that when you finally accept your current condition, the disease progresses enough that you have to accept your latest and newest loss of strength and capabilities.  The blessing is that the condition ‘slowly’ progresses giving you ample time to adjust for the changes that are occurring.

Living with Kennedy’s Disease means finding that balance within yourself that allows you to still accept your condition, but also to live your life to the fullest. You do that by not giving up or giving in to the mental and emotional aspects of the disease.  You find a way ‘to live’ by understanding that life continues to go on whether you choose to participate or not.

Gratitude Journal

journal Comments like, “what’s the use” or “it doesn’t matter anyway” are not used, no matter how frustrated you are at the moment. To help you ‘live’ a more fulfilling life, I recommend starting a ‘gratitude journal’. It can be as simple as writing something on a piece of paper at bedtime or using a tablet or binder for your thoughts. The tools are not important. It is the process that matters.

Whenever you are feeling a little down or frustrated or outright angry, jot down the things in your life you are thankful for. It could be your wife and children (if you are married) as well as your family and friends. List their names and also write down something about them that you are thankful for. It could be your pets, your work, your understanding boss, the house you own, where you live, etc.  Just write it down!

The key is to draw your thoughts away from the negative and replace them with positive ones. This shouldn’t be a hokey (fake) list and comments; it should come from the heart.

I know that most of my readers will never give this gratitude journal a try, but for those that do, they might find that it makes a subtle yet positive difference in their life.

Tuesday, January 3, 2012

My daily routine ...

After my 10 month update on Dutasteride article, I was asked the following: “It would be great to know what your daily activity capacity is. Although your exercise routine is 120 minutes it is hard to know what that means. Can you speak in terms of your daily function? Things like can opening, walking distance, stairs, driving, use of motorized chair or assist devices.

I like to consider myself fairly active considering everything. I turn 65 in a month and like to stay engaged in all kinds of activities. What follows is a general description of most days.


exercise-1 Mondays, Wednesdays and Fridays I have my long exercise program (90-120 minutes). On the other days I have a short exercise routine (15-20 minutes). I find that exercising each morning helps keep my strength levels more consistent and I do not experience joint or muscle pain as often. Both routines are broken down into lower body, upper body, stretching and face/tongue/throat/breathing exercises.

Throughout each day I will perform some quick exercises (1-2 minutes apiece) ... especially swallowing, tongue, breathing and facial exercises as well as some stretches.

Other Daily Activities:

Transferring - I use a wheelchair for mobility because of some serious falls in the past (i.e., broken bones). I transfer from the chair dozens of times a day (to and from the easy chair, office chair, golf cart, bed, toilet, etc.). I also stand for a few minutes whenever I can especially in the kitchen.

Walking I can still walk short distances, but always try to have a wall or railing to hold onto. A walker is helpful when something isn’t readily available.  (Note: I error on the side of caution)

Stairs I can no longer ‘safely’ climb stairs.

Opening Cans - I try to open everything (cans and bottles) with my hands and if that doesn’t work I use a kitchen-aid device that provides better leverage. I try to use my arms and hands as much as possible for lifting, grasping, holding, etc.

Walking the Dog I don’t actually walk. I ride a golf cart and my dog walks. We normally get out for four half-hour walks a day (around the lake). This one activity allows me to interact with neighbors and the wildlife (of which there is plenty). I take time each day to observe nature and find it very rewarding.

Driving I drive everywhere and enjoy the library, dinner with friends, shopping, etc.

Staying Active and Engaged - I am an ‘active’ member of theWriters Corner Logo - small Chattanooga Writers Guild (two meetings a month). Family activities, including get-togethers, are important to me. I enjoy writing and am in the process of rewriting a 95,000 word novel as well as continuing to write short stories. I support other writers by reading, commenting and editing their stories. I love to read and normally have one-to-two books going at a time. I use the internet and phone to ‘actively’ stay in touch with family and friends.  I also enjoy working Sudoku puzzles.

The KDA The Kennedy’s Disease Association keeps me involved and active. Between answering emails, writing letters, keeping the website updated, my involvement on the board and many other KDA related activities, my days are usually full and fulfilling.

This Blog - “Living with Kennedy’s Disease” is something else thatLiving with KD Logo - small takes several hours a week.

Meditation I try to meditate most days.

Chris, I have probably forgot a few things, but I believe you get the idea.  I would like to be a little more involved in some other activities … like hiking and sailing, but …

Should anyone have any further questions, please let me know.

My tip for the day ...

“Stay engaged with the world around you” ... do not let living with Kennedy’s Disease slow you down any more than it has to.

Sunday, January 1, 2012

Courage to face the future

One of my favorite blogs is Goodlife Zen. In her early November article Mary Jaksch defines courage as ‘the ability to face danger, difficulty, uncertainty, or pain without being overcome by fear or being deflected from a chosen course of action.’

courage-1 The article lists seven tips to increase your courage. I felt many of these are appropriate for those of us living with Kennedy’s Disease and added a few comments to her bullet points.

Tip #1: Start something new.

It’s hard to be a beginner again. It takes courage to learn something new and to be a newbie in amongst more experienced people. [As our abilities to perform many physical functions wane, it is important to try other things that can still be enjoyed and accomplished. Start a new hobby. Join a club that organizes events that you enjoy. Anything new will challenge you mentally. And a wonderful side benefit is gaining new friends with similar interests.]

Tip #2: Go somewhere you’ve never been before.

Too often our life is on a track that has little variation. Do you always take the same way home from work? Or go to the same restaurant for a meal? Try going somewhere new. [Yes, I definitely know that traveling or going to places new becomes more difficult over time. But, that doesn’t mean we shouldn’t try. Initially, be conservative in your thoughts and expectations. Pick someplace locally and then regionally. The point is just getting out and about with family and friends and hopefully making new friends.]

Tip #3: Say what is in your heart.

Do you sometimes suppress the true words that want to come out? I’m sure we all do that at times. What holds us back is fear. A good way to train your courage is to say something positive about a person – even if you’re nervous of how they’ll receive what you say. [We still have something to say and we need to be heard. Just because we are no longer physically capable of standing up (for long), that doesn’t mean we shouldn’t stand up for our rights and the rights of others (see Tip #5).]

Tip #4: Speak to someone you don’t know.

Imagine being at a party where you don’t know most people. That can feel daunting. You’ll feel a lot better, if pluck up your courage and start a conversation with someone you don’t know. Ask them what they do, where they live, or what they are passionate about. [Almost weekly I hear from someone living with Kennedy’s Disease who feels isolated (alone). That feeling must be terrible. Make a point of talking to someone, anyone, who you meet or want to meet. Don’t let your fears hold you back. Make a positive comment, ask a question, do whatever it takes to break the ice with a stranger. You never know, he/she might become your friend.]

Tip #5: Stand up for someone else.

If you see someone being treated unfairly, what do you do? ... Try standing up for someone else – you will feel your courage grow. [There are all kinds of victims and those of us living with Kennedy’s Disease need to become advocates for these people. See my comments to #3 above]

Tip #6: Learn to shout.

... I’ve experienced that many people have forgotten how to shout. Their self-esteem is so low that they don’t know how to raise their voice. I suggest learning to shout. You can go to martial art classes, walk on the beach, or shout into a pillow. The shout that comes from the belly is a tremendous source of energy and courage. [At some point in our life we were probably told to hold it down. However, shouting can work wonders in relieving stress and generating energy. Did you ever play any sports? What were you taught to do in difficult situations? Shout! Yell! Get pumped! Try it sometime. It might make a world of difference.]

Tip #7: Dress how you want to.

Our society has strong rules about how we are supposed to dress at certain occasions. Maybe you have a dress-code at work that you need to follow. Make sure that you intentionally dress how you like when it’s leisure time. Express yourself through your clothing. [I use to wear a three-piece suit and looked good in it. I found that my suits just don’t look the same when I am sitting in a wheelchair. You can still look good, however, but it might take some experimentation. The key message here is to not let your dress decide whether you participate or not. Get involved!]


Everything mentioned above has one important message. Participate, become engaged, and don’t let your fears and health issue hold you back any more. There is always something to do, someone to meet, something of interest, etc. if we just have to courage to take the first step (or the first rotation of the chair’s wheel).

Happy New Year!