Genetics Test for ALS now available

The Summer MDA Newsletter had the following article:

“The Athena Diagnostics Division of Quest Diagnostics announced that on April 30, 2012 the first clinically available testing service designed to detect the C9ORF72 repeat expansion mutation that can cause both ALS and frontotemporal dementia (FTD). The C9ORF72 mutation was identified in September 2011 and appears to be the most common known cause of familial ALS, FTD and ALS with FTD. The mutation underlies approximately 40% of familial ALS cases, and also has been found to be responsible for about 8% of sporadic ALS. (Familial ALS refers to situations in which there is more than one known occurrence of ALS in the family; sporadic ALS refers to situations in which there is no known occurrence of the disease in other family members.)


The new genetic test is offered to help speed the diagnosis of ALS. It will be available to clinicians as a standalone test or as part of multigene testing. For testing locations, visit the National Center for Biotechnology Information’s Genetic Testing Registry at http://ncbi.nih.gov/gtr/tests/?term=C1862937.


Those considering genetic testing should speak with their physician. Consultation with a genetic counselor, who can help obtain and interpret the results of genetic testing, is recommended.”


You might ask why this announcement is important to those of us living with Kennedy’s Disease. The most common misdiagnosis for for the mutated CAG triplets repeat gene is ALS. I was one of the people initially misdiagnosed and I know dozens of others that also were misdiagnosed with familial ALS. The initial misdiagnosis of ALS has shattered many lives causing unnecessary stress and often life changing decisions. Having a DNA test that covers approximately 48% of the occurrences of ALS will help rule out that particular disorder when the doctor is unaware of Kennedy’s Disease.

“Lest we forget”

I will be traveling tomorrow so I am posting this article today in hopes that it will help some remember the reason for the holiday. Memorial Day is our way of honoring those who have given their lives in the service of their country. Below is a brief history of the holiday.
 

The History of Memorial Day

Memorial Day, originally called Decoration Day, is a day of remembrance for those who have died in our nation's service.  While Waterloo N.Y. was officially declared the birthplace of Memorial Day by President Lyndon Johnson in May 1966, it's difficult to prove conclusively the origins of the day. It is more likely that it had many separate beginnings; each of those towns and every planned or spontaneous gathering of people to honor the war dead in the 1860's tapped into the general human need to honor our dead, each contributed honorably to the growing movement that culminated in Gen Logan giving his official proclamation in 1868. It is not important who was the very first, what is important is that Memorial Day was established. Memorial Day is not about division. It is about reconciliation; it is about coming together to honor those who gave their all.



Memorial Day was officially proclaimed on May 5, 1868 by General John Logan, national commander of the Grand Army of the Republic (Picture to left), in his General Order No. 11, and was first observed on May 30, 1868, when flowers were placed on the graves of Union and Confederate soldiers at Arlington National Cemetery. The South refused to acknowledge the day, honoring their dead on separate days until after World War I (when the holiday changed from honoring just those who died fighting in the Civil War to honoring Americans who died fighting in any war).


In 1915, Moina Michael conceived of an idea to wear red poppies on Memorial Day in honor of those who died serving the nation during war. She was the first to wear one, and sold poppies to her friends and co-workers with the money going to benefit servicemen in need. Shortly before Memorial Day in 1922 the VFW became the first veterans' organization to nationally sell poppies.
Traditional observance of Memorial Day has diminished over the years. Many Americans nowadays have forgotten the meaning and traditions of Memorial Day. While there are towns and cities that still hold Memorial Day parades, many have not held a parade in decades.


To help re-educate and remind Americans of the true meaning of Memorial Day, the "National Moment of Remembrance" resolution was passed on Dec 2000 which asks that at 3 p.m. local time, for all Americans "To voluntarily and informally observe in their own way a Moment of remembrance and respect, pausing from whatever they are doing for a moment of silence or listening to 'Taps."

Flags at half-staff until noon

On Memorial Day the flag is raised briskly to the top of the staff and then solemnly lowered to the half-staff position, where it remains only until noon. It is then raised to full-staff for the remainder of the day.


The half-staff position remembers the more than one million men and women who gave their lives in service of their country. At noon their memory is raised by the living, who resolve not to let their sacrifice be in vain, but to rise up in their stead and continue the fight for liberty and justice for all.

NORD Calls Bill Passed By Senate Today Most Important Since Orphan Drug Act

The KDA received the following announcement yesterday from NORD (National Organization for Rare Disorders).  We are a member of NORD and supported this proposal.  Its passage is another important step for those of us living with a rare disorder. 

Key provisions of the bill are outlined below including an accelerated approval process as well as providing incentives to researchers to provide more focus on rare disease therapies.  Another important provision will allow for an evaluation of patient tolerance to risks for certain therapies including greater patient feedback.

_________________

Praises Senate for Addressing Needs of Rare Disease Patients

May 22, 2012, WASHINGTON, DC--- The National Organization for Rare Disorders (NORD) applauds legislation passed today by the U.S. Senate -- S 3187, the Food and Drug Administration Safety & Innovation Act of 2012 (FDASIA) -- and says it contains the most comprehensive improvements to public policy for rare disease therapies since the landmark Orphan Drug Act of 1983.

“NORD has been working very hard over the past two years to ensure that the interests of the rare disease patient community are well represented in this important legislation,” said NORD President and CEO Peter L. Saltonstall.  “We are thrilled that our nation’s leaders in Congress are working together and making substantive policy improvements to bring new therapies to patients who desperately need them.

“When this process began over two years ago,” he added, “our focus was on obtaining a commitment by the FDA to further incorporate the exceptional nature of rare diseases in the review of promising new therapies and medical devices.  What we’ve been able to achieve since then, with our members and advocacy partners in the rare disease community, is nothing short of astonishing.  Our sincerest thanks go to all who have helped to make this day possible.”

The bill contains numerous provisions that will enhance the regulatory process at FDA, incentivize further investment by innovators into rare disease therapies, and expand the scientific armamentarium needed to bring the most cutting-edge therapies to patients as quickly as possible.

Specific commitments by the FDA include:

• Expanding the Rare Disease Program at the Center for Drugs and extension of the program to the Center for Biologics
• A new initiative to further qualify and categorize biomarkers for use in clinical trial design, including under Accelerated Approval and similar mechanisms
• A new initiative to evaluate patient tolerance to risk of proposed therapies and to incorporate more patient input in the review process

Legislative provisions in the bill include:

• Codification and modernization of the Accelerated Approval process
• Improvements to policies governing conflicts of interest that will allow expert participation on FDA Advisory Committees
• Creation of a new category of "breakthrough" therapies that will encourage early public and private collaboration to aid in clinical trial design and review
• Expanded access to experts for rare diseases beyond the review process
• Expansion of devices intended for use in very small patient populations, including the possibility of profit for such devices when used in adult populations

The US House of Representatives is working on companion legislation (HR 5651 – the Food & Drug Administration Reform Act of 2012) that has already been unanimously approved by the Committee on Energy & Commerce in a similar bipartisan fashion.  Adoption of that measure is expected when the House resumes its session at the beginning of June.

Both the House and Senate bills are the culmination of a process conducted every five years to reauthorize the Prescription Drug User Fee Act (PDUFA) and related legislation that provides critical funding to allow FDA to review potential new therapies in a timely manner.  As the voice of rare disease patients and their families in the U.S. since 1983, NORD has served as the primary representative of the rare disease patient community over the past two years as needs were prioritized and the legislation now being voted upon by the House and Senate was drafted.

Paralyzed woman uses bionic suit to complete London Marathon

The Verge posted an article this week concerning the ReWalk exoskeleton that I wrote about recently. A portion of the article is shown below. Follow the link above to watch a short video on her walk to the finish line. Her gait, even if a little slow, looks almost natural.

This is amazing to me.  I am so impressed with the desire of this woman to take on the task and then complete it … taking sixteen days … wow!

Technology is getting those of us with living with some sort of a disability closer to leading more productive lives. The reason I write about these technology improvements is because it gives all of us ‘hope’ while we patiently wait for the treatment or cure.


“A paralyzed British woman made history on Tuesday, when she became the first person to ever complete a marathon while wearing a bionic suit. Claire Lomas, 32, finished the 26.2-mile race 16 days after it began, with the help of the ReWalk exoskeleton developed by Amit Goffer.


With the ReWalk, Lomas was able to stand, walk, and climb stairs, using a pair of crutches and a set of wrist strap buttons that determine her movement. The exoskeleton's motion sensors and onboard computer system are used to detect shifts in weight and balance, which trigger movements in its lower limbs. These movements are executed by small motors, and the entire system is powered by a four-pound battery stored in a user's backpack.


Unfortunately, Lomas' name won't appear in the London Marathon's official results, nor will she be eligible to receive a medal, since she didn't complete the race on the same day it started. That's only a slight drawback, however, since the former chiropractor and mother-of-one has already raised more than £80,000 ($129,000) for her charity, and seems justifiably elated with her achievement. "There were times when I questioned whether I would make it when I was training," Lomas told AFP. "Once I started, I just took each day as it came and every step got me a step closer."


If interested, here are three links to earlier posts on the ReWalk:
http://kennedysdisease.blogspot.com/2010/02/bionic-breakthrough.html
http://kennedysdisease.blogspot.com/2010/02/bionics-and-robotics-more-than-you-ever.html
http://kennedysdisease.blogspot.com/2012/04/robotic-walking-devices-are-they-in-our.html

Petition to expand NIH Public Access Policy

The KDA received the following request from Sharon F. Terry, President and CEO, of Genetic Alliance. I signed the petition because this has been something that has bothered me for some time. Read Ms. Terry’s letter and the petition (also shown below) and please consider adding your support to it. Thank you.

___________________________

Dear friends,


Through the groundswell of our network, we've opened up access to the results of federally funded NIH research – let's take that another step!


As you know, the Obama Administration has been actively considering the issue of Public Access to the results of Federally Funded research this year. We have a brief, critical window of opportunity to demonstrate our strong commitment to expanding the NIH Public Access Policy across all U.S. Federal Science Agencies. The Administration is currently considering which policy actions are priorities that will they will act on before the 2012 Presidential Election season swings into high gear, an we need to ensure that Public Access is one of those priorities.


To help accomplish this, today, Monday, May 21st, a petition calling for Public Access to Federally Funded Research has been posted to the White House's "We the People" site.  When the petition garners 25,000 signatures within 30 days, it will be reviewed by White House staff, and considered for action.
To reach this number of signatures, we need you sign the petition at wh.gov/6TH and to do all that you can to activate your networks to do the same.  Qualified signers must be at least 13 years old, have a valid email address, and can come from inside or outside of the U.S. 


We are asking you to please not only sign onto the petition, but to spread the word far and wide. Consider a blog post, an email to constituencies, a tweet, a Facebook share, an action in your library  - anything that tells as many people as possible "I support this petition, I'm signing this petition, and I you to sign it also."  This is the kind of action that will have real consequences when we reach the 25,000 signatures goal - the White House takes this petition site very seriously, and is particularly cognizant of public opinion as the Presidential election draws closer.


Thanks in advance for your support for this effort - together we can expand the NIH Public Access Policy to all US Federal Science Agencies! 

______________________________

The petition reads:


WE PETITION THE OBAMA ADMINISTRATION TO:


Require free access over the Internet to scientific journal articles arising from taxpayer-funded research.


We believe in the power of the Internet to foster innovation, research, and education. Requiring the published results of taxpayer-funded research to be posted on the Internet in human and machine readable form would provide access to patients and caregivers, students and their teachers, researchers, entrepreneurs, and other taxpayers who paid for the research. Expanding access would speed the research process and increase the return on our investment in scientific research.


The highly successful Public Access Policy of the National Institutes of Health proves that this can be done without disrupting the research process, and we urge President Obama to act now to implement open access policies for all federal agencies that fund scientific research.
We the People … Full URL to the petition: https://wwws.whitehouse.gov/petitions/%21/petition/require-free-access-over-internet-scientific-journal-articles-arising-taxpayer-funded-research/

Learning to Be Content

I have written often about acceptance and letting go. It is a critical part of moving forward with your life. I believe that often when we learn that we have an incurable health condition, life comes to a stop. We start living in a world filled with fears of ‘what if’ and ‘what could be’ instead of living in the moment of ‘what is’. Yesterday I read an interesting article written by Leo Babauta in Zen Habits titled, “The Little Guide to Contentedness.”

Below is a portion of Leo’s article with the ending focused on ‘health’.
 

Learning to Be Content

If you are in a bad place in your life, and are unhappy with some things about it (your health, relationship, yourself, bad habits, etc.), it can be a miserable thing. But here’s something interesting: it can also be a happy thing. If you can learn to develop the right mindset, you can be happy now, without changing anything else. You don’t need to wait until you’ve changed everything and made your life perfect before you’re happy.

The mindset of waiting for happiness is a never-ending cycle. Instead, learn that you can be content now, without any external changes. Here’s how to start:

1. Take a moment to be grateful for something. What in your life is amazing? Even if everything seems to suck, there must be one good thing. Find something, and give thanks for that.
2. Catch yourself thinking, “This sucks.” It’s amazing how often people think this thought. It might be in different words, but if you catch yourself thinking something like that, pause. Reverse the thinking. Find a way to be thankful for the situation.
3. Find the little things that can give you simple joys. What do you need to be happy? … like taking a walk, spending time with a loved one, reading a book. These cost very little, and require very little, and can make you very happy. Focus on what gives you happiness, and focus on those rather than what you don’t have.
4. Find the things about yourself that you’re happy with. We tend to criticize ourselves easily, but what if we turned it around and asked, “What do I do right? What am I good at? What is loveable about me?” Make a list. Start to focus on these things rather than what you’re unhappy with.
5. Do the same with others in your life. Instead of criticizing them, ask yourself, “What is good about this person? What do I love about them?” Make a list, and focus on these things above all else.
6. Assume that you, others, and life are perfect. You are great, and don’t need improvement. You are already perfect. Other people are also just as perfect, and don’t need improvement. You just need to appreciate them for who they are. The moment we are living in is not a stepping stone to something better — it is exactly wonderful, and we have already arrived at the perfect moment.

The Contented Life

It might be useful to look at what life would be like if you learned to be content. Look at your health, for example:

Much of our culture’s unhealthiness comes from unhappiness — eating junk food to give ourselves comfort and relieve stress, not exercising because we think we can’t (because we have a bad self-image), being glued online because we think we might miss something if we turn off the computer or iPhone. When you realize that you aren’t missing anything, and you don’t need junk food to be happy, and you are good enough to exercise, you can slowly return to health.

This is just one item in a contented life, but it gives you a picture of what might be. And the truth is, once you learn the simple trick of contentedness, it’s really a picture of what already is. You just need to let go of the fears and anxieties, and see what already is.

‘Be content with what you have; rejoice in the way things are. When you realize there is nothing lacking, the whole world belongs to you.’ ~Lao Tzu

Surprising causes of depression

Depression is defined as:

• A mental state characterized by a pessimistic sense of inadequacy and a despondent lack of activity.
• Sad feelings of gloom or inadequacy.

Depression can affect anyone and especially people with untreatable conditions. Often I receive emails or comments about a person diagnosed with Kennedy’s Disease having acceptance issues. Usually it is the spouse or a family member who is writing.


In the past I wrote that not every health issue is related to Kennedy’s Disease. This can be true with depression (unhappiness, despair, etc.). We might initially assume our feelings are because of our condition, but it could be because something else is going on with our body.


I found the following article in Yahoo Health News interesting:
 Twelve surprising causes of depression 

Five of the possible causes of depression are shown below

1. Poor sleep habits

• It's no surprise that sleep deprivation can lead to irritability, but it could also increase the risk of depression.  A 2007 study found that when healthy participants were deprived of sleep, they had greater brain activity after viewing upsetting images than their well-rested counterparts, which is similar to the reaction that depressed patients have, noted one of the study authors.  "If you don't sleep, you don't have time to replenish [brain cells], the brain stops functioning well, and one of the many factors that could lead to is depression," says Matthew Edlund, MD, director of the Center for Circadian Medicine, in Sarasota, FL.

2. RX Medications

• Depression is a side effect of many medications. For example, Accutane and its generic version (isotretinoin) are prescribed to clear up severe acne, but depression and suicidal thoughts are a potential risk for some people. Depression is a possible side effect for anxiety and insomnia drugs, including Valium and Xanax; Lopressor, prescribed to treat high blood pressure; cholesterol-lowering drugs including Lipitor; and Premarin for menopausal symptoms. Read the potential side effects when you take a new medication, and always check with your doctor to see if you might be at risk.

3. Smoking

• Smoking has long been linked with depression, though it's a chicken-or-egg scenario: People who are depression-prone may be more likely to take up the habit. However, nicotine is known to affect neurotransmitter activity in the brain, resulting in higher levels of dopamine and serotonin (which is also the mechanism of action for antidepressant drugs).  This may explain the addictive nature of the drug, and the mood swings that come with withdrawal, as well as why depression is associated with smoking cessation. Avoiding cigarettes—and staying smoke free—could help balance your brain chemicals.

4. Thyroid disease

• When the thyroid gland in the neck doesn’t produce enough thyroid hormone, it’s known as hypothyroidism, and depression is one of its symptoms. If you experience new depression symptoms – particularly along with cold sensitivity, constipation and fatigue – a thyroid test couldn’t hurt. Hypothyroidism is treatable.

5. Where you live

• You can endlessly debate whether city or country life is better. But research has found that people living in urban settings do have a 39% higher risk of mood disorders than those in rural regions. A 2011 study in the journal Nature offers an explanation for this trend: City dwellers have more activity in the part of the brain that regulates stress. Depression rates also vary by country and state.

Where would we be without our mothers?

The question is not about giving birth. It is about the kind, gentle, nurturing and loving person who is/was always there for us.


My mother made me hot chocolate every morning because I loved it. When she baked, she always made a little extra pie crust sprinkled with cinnamon and sugar because it was my favorite. My mom always found a way to make each of the holidays special … especially Christmas. She quizzed me every day for a week so I was ready for my confirmation exam. My mother stayed up all night to support me while I finished my thesis because I procrastinated for a week ahead of time. She waited up for me when I was out late to make certain I made it home safe. My mom took in my wife and child to make certain they had a loving home while I was overseas serving my country.  She wrote me every week while I was in Vietnam and sent care-packages once a month. 


I could go on, but you get the idea. While growing up, we often took our mom’s for granted, but fortunately they never took us for granted.  And, we always knew we were loved … no matter what.

Determining when Kennedy’s Disease started in your family

The KDA Forum had an interesting discussion on tracing your family tree to determine when and where Spinal Bulbar Muscular Atrophy (aka Kennedy’s Disease) first showed up in your family.

Dan, a forum member, provided the link below concerning tracing the linage of the defective gene. He also did a nice job of summarizing the study for us:

“Turns out there is something called a "founder effect" where they can prove everyone with SBMA in a certain nation is related to a single ancestor. For example, they showed 41 SBMA patients they found in Norway, Sweden, and Finland were all related to a common ancestor; but 16 patients they found in Japan must have had two different ancestors. They determine that result by examining tiny similarities and differences in the chromosomes.

The researchers also found that the United States and Canada tend to have a greater number of founders, probably due to the history of immigration into those two nations over the centuries.
As for how the SBMA mutation gets started, ... sometimes it is just a random error in the chromosome copying process. Other times it could be related to certain events such as exposure to radiation or certain toxic (mutagenic) chemicals.”

Definition of Haplotype: The genetic makeup of a single chromosome.

From the European Journal of Human Genetics:

Multiple founder effects in spinal and bulbar muscular atrophy (SBMA, Kennedy disease) around the world

Abstract:

SBMA (spinal and bulbar muscular atrophy), also called Kennedy disease, is an X-chromosomal recessive adult-onset neurodegenerative disorder caused by death of the spinal and bulbar motor neurones and dorsal root ganglia. Patients may also show signs of partial androgen insensitivity. SBMA is caused by a CAG repeat expansion in the first exon of the androgen receptor (AR) gene on the X-chromosome. Our previous study suggested that all the Nordic patients with SBMA originated from an ancient Nordic founder mutation, but the new intragenic SNP marker ARd12 revealed that the Danish patients derive their disease chromosome from another ancestor. In search of relationships between patients from different countries, we haplotyped altogether 123 SBMA families from different parts of the world for two intragenic markers and 16 microsatellites spanning 25 cM around the AR gene. The fact that different SBMA founder haplotypes were found in patients from around the world implies that the CAG repeat expansion mutation has not been a unique event. No expansion-prone haplotype could be detected. Trinucleotide diseases often show correlation between the repeat length and the severity and earlier onset of the disease. The longer the repeat, the more severe the symptoms are and the onset of the disease is earlier. A negative correlation between the CAG repeat length and the age of onset was found in the 95 SBMA patients with defined ages at onset. European Journal of Human Genetics (2001) 9, 431-436.

Tempering hope with a dose of reality

A responder in the KDA Forum mentioned a BBC News article that showed promise on the research front. The article titled, “Range of brain diseases could be treated by single drug,” was interesting because it mentioned Huntington’s disease and that is often linked to Kennedy’s Disease in regards to the defective DNA. The report mentioned that the study was preliminary, but everything starts out as preliminary and it could eventually lead to something.

“In a study, published in Nature, they prevented brain cells dying in mice with prion disease. It is hoped the same method for preventing brain cell death could apply in other diseases. The findings are at an early stage, but have been heralded as "fascinating".


Many neuro-degenerative diseases result in the build-up of proteins which are not put together correctly - known as misfolded proteins. This happens in Alzheimer's, Parkinson's and Huntington's as well as in prion diseases, such as the human form of mad cow disease.”


Other interesting comments include:

“The idea, which has not yet been tested, is that if preventing the shutdown protects the brain in prion disease - it might work in all diseases that have misfolded proteins.
Prof Mallucci added: "What it gives you is an appealing concept that one pathway and therefore one treatment could have benefits across a range of disorders. But the idea is in its early stages. We would really need to confirm this concept in other diseases."


“Professor of Molecular Neurobiology at King's College London, Roger Morris, said it was a "breakthrough in understanding what kills neurons". He added: "There are good reasons for believing this response, identified with prion disease, applies also to Alzheimer's and other neuro-degenerative diseases. "And because it is such a general response, we already have some drugs that inhibit this response."


The more I read, the more tempering words I saw: “infancy, early stages, need to confirm, and need to see the same results in other diseases.”

I immediately sent the link to Ed, our resident Biology professor, asking for his thoughts. Ed responded back with the following:

“I have not read the paper (yet), but it has always been hoped that misfolded proteins would be a common thread in the mechanism that causes the cell death.  However, it is VERY premature to assume it actually works on other diseases, so I would be very careful how to explain it.  The implementation of such a treatment is likely many years away.”


Still, the more we understand about what causes these health conditions the better chance there is to find a potential link to the diseases and possibly even a treatment. ‘One small step’ might lead to ‘a giant leap’ along the way.

Wisdom and Courage is what is needed

If you follow my blog, you know that “finding acceptance” is why I started writing these articles and continues to be what I am searching for today. Acceptance, in my opinion, can take many forms.  What I am writing about today will use the Serenity Prayer for the basis of my thoughts.

“God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.”

• Accepting that I have Kennedy’s Disease was easy. DNA tests confirmed that I had the defective gene. And, because I had two brothers already diagnosed with Kennedy’s Disease, denial was out of the question.
• Accepting that I cannot change what Kennedy’s Disease does to my motor neurons and muscles was more difficult and cost me earlier in life. How much it cost is still up for debate, but there was a cost. In those days I was unaware that over-exercising can do more harm than good. I felt that if I worked even harder on weight and cardio training that I would be stronger and the atrophy would be less noticeable. Boy was I wrong.
• Changing what I can took me several more years. In fact, I am still changing things.
• It all began with my smart exercise program. It changed my life for the better, but I was still missing something.
• Later, a physical therapist who had experience with degenerative disorders designed an even better exercise program that I am still using today.
• Beginning to take dutasteride was a shot in the dark. I went with the recommendations of a neurologist and researcher who I respect, but did not have a clue as to what the results would be (positive and negative). Fortunately, the last fifteen months have been very positive and possibly the best year of my recent life in regards to managing and minimizing the progression.
• Courage is a good word to explain my journey, because making these changes did not come easy. Fortunately, I keep a journal and this helps me review and understand what works and what doesn’t.

• Wisdom to know the difference is what I am still working on today. There is a fine line between accepting and giving up or in to something. I never want to give up or give in. I want to go down fighting. In fact, I need to go down fighting. But, I need to be smart about it also.
• For example: Deciding to use a wheelchair as my primary mobility device was difficult, but necessary when I learned what might happen to me if I had a bad fall again. It took courage to make that change, but I believe it made a major difference in my life. Living in fear that the next fall might cripple me for life is no way to live.
• As this health condition continues to progress, I need to continually review my capabilities and the options available to me.
• Fortunately, I have an understanding and smart wife who continually challenges me to be consider the options and encourages me on. She is a blessing in my life.

Wouldn’t you like to just get away from it all?

At times, it would be nice to just sail away and forget about all our troubles … at least for a day or two. Unfortunately, it just doesn’t work that way. We still have to wake up the following morning and face the music.

However, having an escape mechanism is important for all of us. It is even more important for those of us with a health issue. These escapes can be any hobby or sport or activity that allows us to forget about our troubles for a moment anyway. Another activity that accomplishes the same thing is spending quality time with our loved ones, especially our children and grandchildren.

Refocusing is the key point of any of these activities. It is the ability to escape for a moment by redirecting our thoughts towards something more pleasant and interesting. And, if the object of our newfound attention is something we love to do, it can be an even more wonderful experience.

Often, when we learn about our non-treatable and incurable disease, it becomes far too easy to slip into a world of asking ‘why me’ … ‘how could this happen’ … ‘what now’ … and ‘what is the use’. And, that is why it is important to ‘refocus’ our thoughts on something more pleasant and beneficial.

If we don’t have such an activity or have given it up, perhaps it is time to find that special something we enjoy and make it a part of our life once again. With such an activity, it is possible to ‘sail away’ to a world more pleasant and acceptable at least for the moment anyway.