Thursday, April 26, 2012

Parkinson's and Stress

The cost of any neurodegenerative disease to patients, caregivers, families, and society has been well documented.  Obviously, we are talking about emotional impact as well as financial.  The University of Pennsylvania Perelman School of Medicine published information describing the size of the problem relating to the volume and cost of brain diseases and injuries.  The current cost was estimated to be about $600 billion per year.  For Alzheimer's alone, the American Health Assistance Foundation states that "over 5 million (5.4 million) Americans age 65 and older are thought to have Alzheimer’s disease. By 2050, the number of Americans with this disease could increase to over 15 million.  The national cost of Alzheimer’s disease (in people over 65 years old) was $183 billion in 2011, and by 2050 it will be $1.1 trillion."  Without question, the size of the problem is enormous.

One of the contributing factors, and possibly one of the key factors, that is being talked about currently is stress.  A 2011 article on the Scientific American website titled "Neurostress: How Stress May Fuel Neurodegenerative Diseases" discusses stress as a causative factor.  My personal opinion is that stress in all it's forms deserves more attention.  

Clearly, stress is part of our everyday lives at work or play.  Not all stress is bad.  However, based on the personality, tolerance level, and genetic background of individuals, stress can create cellular "oxidative stress" and "inflammation" that has been linked to many different types of diseases, including the neurodegenerative variety.  A 2012 paper published on the Intech website provides a good explanation.  We have been hearing for a long time about the dangers of free radicals and the benefits of anti-oxidants.  I am not going to recommend a particular strategy for supplementing the body's natural ability to produce anti-oxidants, however I would like to call attention to genetic factors that vary between individuals and are worth knowing about.

Information regarding genetic risk factors related to Alzheimer's is available on the National Institute of Health's National Institute on Aging website, which states: "increased risk is related to the apolipoprotein E (APOE) gene found on chromosome 19. APOE contains the instructions for making a protein that helps carry cholesterol and other types of fat in the bloodstream. APOE comes in several different forms, or alleles. Three forms—APOE ε2, APOE ε3, and APOE ε4—occur most frequently.
  • APOE ε2 is relatively rare and may provide some protection against the disease. If Alzheimer's disease occurs in a person with this allele, it develops later in life than it would in someone with the APOE ε4 gene.
  • APOE ε3, the most common allele, is believed to play a neutral role in the disease—neither decreasing nor increasing risk.
  • APOE ε4 is present in about 25 to 30 percent of the population and in about 40 percent of all people with late-onset Alzheimer's. People who develop Alzheimer's are more likely to have an APOE ε4 allele than people who do not develop the disease."
If you have a family history of neurodegenerative disease, It may be a good idea to find out if you have the APOE4 gene from both parents.  Testing is currently available but not routine.  It is likely to be much more accessible in the future.  If you are at risk, you have the opportunity to adjust your lifestyle, diet, and make other changes to reduce the risk.

Other potential sources of stress we all live with may include (I don't have anything to back these up, but it makes sense to me):
  • anything ingested into the body including water and other liquids and food
  • the air we breath
  • smoking
  • pollution
  • exposure to or ingestion of toxins including pesticides (not sure if alcohol should be included in this category, but it seems likely)
  • excess weight
  • overall health
So all of these factors that are part of life as we know it can increase our chances of being diagnosed with any number of diseases.  Each of us had the opportunity to learn as much as we can that will enable us to make informed choices to safeguard our own health as well as the health of our families.

I can't help but think that this subject provides an opportunity to think about, not only what factors contribute to symptoms related to various conditions, but also what are the root causes behind these problems.  Perhaps at some point we will need to examine our priorities as individuals, couples, and families and make some tough decisions regarding wants vs. needs, what we do for a living, where we live, what we eat and drink, how we relax, and more.  It is natural to be lulled into complacency by a sense that we do not have choices.  The truth is that, for most of us, society, our neighbors, our friends, TV advertising, and more establish the constraints we choose to live within.  I am as guilty as the next person, but at least I am aware to some degree of the danger.  Maybe we all are.  Something to think about in your spare time. 



Friday, April 20, 2012

Presentation at PAR Triumph Breakfast


Triumph Talk
April 11, 2012

Thanks to Cheryl and all my friends at PAR for giving me the opportunity to speak to you today.

I was diagnosed with ET (the action tremor that afflicted Katherine Hepburn) in 1991.  For those of you who are not familiar with ET, the only symptom is an action tremor (tremor that occurs when using the hands to hold a glass, shave, etc.) that can be very debilitating.  The most famous example of a person with ET is Katherine Hepburn.  In early 2008 I began experiencing unusual fatigue, dizziness, and cognitive problems in addition to the tremor, all of which became amplified under any degree of stress.  All I could think of was that it might be related to my ET, so I made an appointment with University of CO Hospital movement disorder neurologist Dr. Olga Klepitskaya.  After a thorough examination, I was told that I had early stage Parkinson’s.  This came as a shock as I had been assured by a number of neurologists during the years since my ET diagnosis that I did NOT have PD.   I have learned since that while this “evolution from ET to PD” is not typical, it is occurring more frequently.  I tried to follow Dr. Klepitskaya’s advice to not over-react to my diagnosis, but decided to call my wife, Linda, and have her come home early from work to share this news.  I guess I am not the Lone Ranger type.  If I were, I couldn’t ask for a better Tonto.

My symptoms made it impossible to do the work I had been doing as Marketing director for an agency in Colorado Springs.  So after working for 38 years in various sales, marketing and merchandising management positions with companies that included General Electric, Panasonic, Federated Dept. Stores, and American Express and obtaining an MBA along the way, my career was over with no fanfare.   This was not the circumstances anyone would hope for when starting their retirement years.

Following my diagnosis, I became obsessed with learning everything I could about PD, which is a good thing up to a point.  Late in 2009, I realized I was spending too much time worrying about my situation and did not have much peace of mind.  I decided it was time to reach out to try to help others.  I started a support group in my retirement community and began to increase my involvement in other area support groups and local clinical research studies.  I found that support groups welcomed presentations about PD from an informed fellow patient who was able to share helpful information about general PD topics as well as what I have consistently found to be PWP’s biggest concern, cognition problems including dementia.  It wasn’t long before I was having patients referred to me for one-on-one discussions about topics including motor & non-motor PD symptoms, referrals to movement disorder specialists, cognition, medications, alternative therapies, supplements, DBS, caregiver issues, planning for the future and more.  It is important to add that I always shared information with the understanding that I am not a doctor and that the most important thing any patient can do is to find a movement disorder neurologist who has the training and expertise to provide the best possible care based on their individual needs

Around the end of 2009, I learned that I would be an excellent candidate for deep brain stimulation therapy (DBS), which is sometimes described as a “pacemaker for the brain”, and was approved for the surgery at UCH in April 2010.  My wife and I decided to delay the surgery until March 2011 due to insurance considerations, which turned out to be a fortunate decision for a couple of reasons.  First, I was accepted for participation in a clinical research study at the neurological division of the National Institute of Health.  This experience armed me with additional information that would be valuable in the future.  Second, we started attending DBS support group meetings, starting an important relationship with Kate Kelsall and Valerie Graham that continues today.  For those of you who don’t know Kate and Val, they are my heros.  Not only did they start the first DBS support group in the country, they provide invaluable support for DBS patients at UCH throughout the surgery process and are tireless advocates for “PWP’s”.

My DBS procedure entailed three surgeries over a four-week period during March and early April 2011.  The first and second surgeries involved implantation of leads into the thalamus (the target for patients for whom tremor is the main problem).  The third surgery was for insertion of a battery-operated neurostimulator in my chest that would later be programmed to generate pulses of electricity designed to eliminate the tremor. During my neuropsychological exam, which was part of UCH’s evaluation process for DBS, my small motor skills with both hands were described as “severely impaired”.  These slides are actual examples of my small motor skills with my neurostimulator on and off, demonstrating the amazing impact this surgery can have.  I was virtually tremor free for the first time in 20 years.

Early in 2011, prior to my DBS surgery, I decided to write about my relationship with my then 7 year old grandson, Carson, and how I chose to communicate with him and my other grandchildren about my illness.  This slide shows the source of my inspiration.  When they asked why my hands were shaking, I simply told them that Grampa has “Shaky Paws”.  Later, I told them about my planned DBS surgery, which I called a “special procedure” that I hoped would take away the shakiness and allow me to have more fun with them.  The original idea was to write something that I hoped would be enjoyed by family members, but thanks to the support and encouragement of friends like Cheryl, it has become more than that.

Carson and His Shaky Paws Grampa  was accepted for publication in July and was published in September 2011 with support from:
  • Team Fox  (Michael J. Fox Foundation)
  • Muhammad Ali Parkinson Center
  • Davis Phinney Foundation
  • Parkinson Association of the Rockies
  • International Essential Tremor Foundation (IETF)  
  • SE Parkinson Conference
  • National Parkinson Foundation (NPF)
  • European Parkinson Disease Association (EPDA)
  • Parkinson Society Canada
  • Parkinson's UK
  • Medtronic  
  • Parkinson's New Zealand
  • Parkinson Alliance
  • DBS-STN.org
  • Parkinson Action Network
  • Northwest Parkinson Foundation
In particular, interest and support from PAR and Medtronic, as well as social networking, have enabled me to engage a new career as a children’s book author and patient perspective PD advocate.  Over the last six months, I have had the privilege of speaking to support groups and prospective DBS patients, including PAR-sponsored events in Colorado Springs and Loveland.  PR for the book and it’s message have included interviews on PAR’s website, in local papers, the Denver Post, a KOA radio interview, and, most recently, a TV interview by the Fox affiliate in Phoenix in conjunction with a presentation I made in March at the Muhammad Ali Parkinson Center.  This is the picture taken in my home of Carson and me during the Denver Post interview.
I couldn’t have done any of these things without the love and support of my wonderful wife of 42 years and caregiver, Linda (aka Tonto).  We plan to travel to CA in late July to participate in the Parkinson Disease Foundation’s Research Learning Institute designed to continue the education of people involved in PD advocacy.  I am currently working on a second book in the Shaky Paws Grampa series titled Carina and Her Bionic Grampa.  At least two more books are in the planning stages.

I am grateful for the opportunity, especially after the disappointment of my “first retirement”, to be involved in work that gives me the opportunity to be helpful to others as well as to learn from them.  I can honestly say that I believe that, without knowing it, I have been preparing for this opportunity my whole life.  To quote Michael J. Fox, “I am a lucky man”.

Thank you for your interest and for your support of the Parkinson community.

Thursday, April 19, 2012

Parkinson's and Dementia

I have had many opportunities to speak with other PD patients through support groups, conferences, advocacy presentations, individual meetings, and just talking with friends.  Without question, the #1 concern of the majority of patients (perhaps less so with young onset PD) is whether they will end up with dementia.  It is not surprising, since most of us feel the effects of bradyphrenia (slowed mental processing) and wonder if it will get worse.  It is definitely something that should be discussed with your movement disorder specialist if there are any concerns about cognition or memory.  He/she will help determine the likely cause of the problems, which can include depression, side effects from other medication, vitamin B12 deficiency or others.

Problems experienced by many PWP's may include word finding, organization, scheduling, planning, multi-tasking, recall of verbal information, spatial disorientation, hallucinations, loss of "train of thought" or others.  Some of these fall into categories called executive function and working memory.  Typical estimates in the past for the percentage of PD patients with dementia are in the 20-40% range, but some more recent estimates are significantly higher.  In a 2010 Cambridge research paper (Lancet Neurol 2010; 9: 1200–13
Published Online September 28, 2010, DOI:10.1016/S1474-4422(10)70212-X, Behavioural and Clinical Neuroscience Institute, University of Cambridge) states:


"As Parkinson's disease dementia has been associated with mortality, longitudinal estimates of its cumulative prevalence, rather than cross-section estimates, are more accurate representations of true dementia frequency within the Parkinson's disease population, and range from 75% to 90%".

Some doctors are reluctant to talk openly about this subject due to legitimate concerns about patient reaction.  However, if it is important to you and your caregiver to know as much as possible about all aspects of your current condition so that you can participate in decision making and make informed choices for your future, you may want to be insistent.  It is important to understand that your doctor may not always be able to answer your questions, even if he/she would like to.  If you have symptoms that concern you and other causes have been ruled out, ask if he/she will administer the Montreal Cognitive Assessment, which can be done onsite in about 10 minutes. This will give your doctor a good idea of your current condition in potential problem areas related to PD, including mild cognitive impairment. The best way to get the most reliable feedback is to take a full neuropsycholgical assessment with a neuropsychologist.  You should be able to get a referral from your doctor if he/she agrees that it is appropriate.

The two types of dementia most frequently associated with Parkinson's are Parkinson's Disease Dementia (PDD) and Lewy Body Dementia (LBD).  There is some debate as to whether these are actually separate illnesses or the same.  The primary distinction separating the two is time of onset.  LBD is diagnosed if symptoms start before, concurrent, or slightly after onset of PD motor symptoms.  PDD is the diagnosis when symptoms occur years after onset of motor symptoms.  


The primary reason that there has been reluctance to discuss this issue, I think, is that, like Alzheimer's, Parkinson's dementia is considered to be a terminal condition.  Dememtia Guide.com states that for PDD and LBD "the duration of either disease is “several years” from onset of symptoms."  In contrast, the Lewy Body Disease Association (which includes both diseases under the LBD "umbrella" states that "the disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person's overall health, age and severity of symptoms."  This disparity in information can't help but create confusion and anxiety for patients, caregivers, and families.

I recommend these articles/websites for further information:


Thursday, April 12, 2012

18th Annual Parkinson’s Unity Walk


Thousands to Participate in 18th Annual Parkinson’s Unity Walk
in Support of Parkinson’s Community
Participants make every step count at the largest grassroots fundraiser
for the Parkinson’s community
Kingston, N.J.— April 9, 2012—The 18th Annual Parkinson’s Unity Walk (PUW) will be held on Saturday, April 28, 2012 in New York City’s Central Park, The Parkinson Alliance announced today.
The PUW is the largest grassroots awareness and fundraising event for Parkinson’s disease (PD) research in the United States. The event, which has grown from 200 participants in its inaugural year, is expected to unite more than 10,000 participants from across the globe.
“The annual Parkinson’s Unity Walk is a powerful way for families, friends, caregivers, research organizations and major Parkinson’s foundations to come together,” said Martin Tuchman, Chairman of The Parkinson Alliance. “For any individual or family affected by Parkinson’s disease who wants to feel the support, strength and compassion of a community – this Walk is where you should be.”
Currently, more than 1 million individuals in the U.S. are living with PD and 60,000 are newly diagnosed annually. Funding for research, for the cause and cure, as well as therapies that will improve the quality of life for those with PD, is critical. The PUW donates one hundred percent of all donations directly to research. As the “unity” in its name implies, the funds raised are distributed evenly among the seven leading Parkinson’s foundations in the country: American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, Parkinson’s Action Network, The Parkinson Alliance, Parkinson’s Disease Foundation, and The Parkinson’s Institute and Clinical Center.
“The National Parkinson Foundation (NPF) is proud to participate in and support the 2012 Parkinson’s Unity Walk,” said Joyce Oberdorf, NPF President and CEO. “This event truly unifies the whole Parkinson’s community behind a common mission—supporting the best, cutting-edge research. It is like no other.”
In addition to being able to walk with thousands of members of the Parkinson’s community, participants are able to take full advantage of a myriad of available resources at the event, including information about clinical trials, educational material from leading Parkinson’s organizations and information on how to become an advocate for the Parkinson’s community. This day of community and education also provides individuals who might otherwise have limited access to experts in the field, a chance to speak directly with movement disorder specialists, neurosurgeons, physical therapists, occupational therapists and speech therapists.
Most importantly, whether PUW participants are individuals diagnosed with PD seeking encouragement, family and friends showing support, caregivers desiring to know more, or researchers working toward new therapies, the PUW serves as a source from which to draw strength and build a greater community of support.
“It is by motivating, collaborating, educating and raising awareness of Parkinson’s disease that we take important steps toward our goal of improving the quality of life of Parkinson’s patients while we continue to work toward a cure,” said Tuchman.
Attendees are also invited to visit the Abbott booth on Margot Zobel Way to leave their photo and inspirational message on the Messages of Hope™ Wall. For each message, Abbott, a leading global health care and medical research company, will donate $15, up to $15,000, to the PUW in support of research. Additionally, Abbott will invite walk participants to receive ongoing information about treatment and research through an opt-in text message campaign. For each individual who registers, Abbott will contribute an additional $1, up to $10,000, to the PUW.
Registration begins at 8:30 a.m. at the Bandshell at 72nd Street in Central Park. The Kick-Off will start at 9:45 a.m., followed by a 1.4-mile, wheelchair-accessible walk through the Park.
To register or make a donation, go to www.unitywalk.org or call 866-789-9255.
About The Parkinson Alliance
The Kingston, NJ-based national non-profit is dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson’s disease, and is the umbrella organization for the Parkinson’s Unity Walk. The Parkinson’s Unity Walk is the largest grassroots fundraiser event for Parkinson’s disease in the country. The inaugural Walk in 1994 had 200 participants and raised $16,000 for research. In the 2011 Walk, close to 10,000 walkers raised more than 1.5 million for Parkinson’s research. From day one, 100% of donations have gone to research supported by the seven major U.S. Parkinson’s foundations.
For more information and a complete list of grants supported by the Parkinson’s Unity Walk, visit www.unitywalk.org.

Wednesday, April 4, 2012

Angel's Wings


I was talking to my sister, Janis, on the phone last night.  She was complimenting me on the recent newspaper and TV interviews and for doing "good things".  I felt uncomfortable accepting her praise, but I wasn't sure why.  This will be an attempt to explain it.

One of my favorite songs that I have sung with church choirs over the years came to mind:
Surely the presence of the Lord is in this place
I can feel His mighty power and His grace
I can feel the brush of angel's wings; I see glory on each face
Surely the presence of the Lord is in this place

I have felt for some time that my life is on automatic pilot.  I am happy that I have been able to do "good things", but I can't take credit for them.  Even though I have been the one giving presentations, doing interviews, and writing books and articles, I know that all of it is a gift from God.  Certainly to me, and hopefully to others.  I have a strong sense that everything I have done in life up to this point has prepared me for what I am doing now. It seems that He had a purpose for my life that is now unfolding. The opportunities that have been laid before me to make a difference for others, no matter how imperfectly, are surely evidence of His presence in my life.

I have had this feeling for years now.  I have written many examples of how He has been watching over my family and me in a personal journal that I kept for three years.  The most recent example is how He is watching over my younger son, Brian, and his family as they prepare for a move to Shanghai in July to accept teaching positions at a prestigious overseas school.  I see His fingerprints all over the inspiration that was given to my son and his wife, Sybil, to pursue this idea.  To orchestrate a plan that would take them to Kansas to interview with overseas schools from all over the world.  To catch the attention of the interviewers from Shanghai in the face of tons of competition.  To have been selected and offered positions after running a gauntlet of five or six interviews.  To selling their house in preparation for the move without even listing it.

I have felt "the brush of angel's wings" and am grateful.  Surely the presence of the Lord is in this place.

Sunday, April 1, 2012

April Is Parkinson's Awareness Month!

Parkinson's Awareness Month starts today (no fooling)!  It is the perfect time to show your support for family or friends with this disease or to honor the memory of a loved one.  While donations are an obvious option, I can suggest some others:

  1. Call, write a letter or poem,  or draw a picture for your PWP.  These are also things your children can do so that they will learn to experience the joy of compassion and helping others.
  2. Pray for a cure or advances in treatment of symptoms that improve quality of life for patients.  Also give thanks for the many volunteers and PD organizations that give so much of themselves for others.
  3. Visit your loved one to let them know they are not forgotten and that they are important to you!  Take them to dinner, buy them flowers or a book, or just sit and talk.
  4. Participate in or commit to participate in a PD fundraiser in your area.  If you don't know where to start in researching this, just google "Parkinson's organizations in the _________ area".
  5. Investigate opportunities to use your time and talent to be a volunteer for one of these organizations.  All the above involve little or no expenditure.
  6. Donations are needed to keep the research going that will ultimately lead to a cure.  Beyond that, there are organizations dedicated to providing services and invaluable support for their PD communities that need your help.  The following are some of the organizations that I can recommend for research (above the line) or services/support donations:
  • Michael J. Fox Foundation (www.michaeljfox.org)
  • Parkinson Alliance (www.parkinsonalliance.org)
  • National Parkinson Foundation (www.parkinson.org)
  • Parkinson Association of the Rockies (www,parkinsonrockies.org)
  • Davis Phinney Foundation (www.davisphinneyfoundation.org)

Whatever you choose to do will be appreciated!