• Latest Research News

    Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

    What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

    Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

    So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

    And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

    In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

    And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

    As always,thanks for reading.

    “It does not matter how slowly you go as long as you do not stop.” – Confucius

     

     

     

     

     

     

  • I Am Still Here!

    I think I may have set a new record for days (months!) between posts!  It’s been over 75 days since my last post on March 25th.  I’m happy to report that the long delay was not due to health problems, well maybe a bit of apathy, one of those non motor symptoms PwP’s sometimes suffer, but to a busy schedule. 

    Here’s a quick summary:

    March – closed on new house, start moving.

    April – Son Dale, daughter-in-law Monica and Granddaughters Angeline and Ariana arrive, they helped us finish the move from the townhouse to the new house, what a lucky coincidence, they were a great help.

    April – home in Tennessee is FINALLY  back on the market, just 7 months after the flood.

    April – we attended the PD Expo in Sarasota and performed with the PD in Motion dance group.

    April  – Son Darrin arrives, again a great help, he painted two walls and some furniture for us.

    April – short trip to Orlando to meet up with fellow PwP Ted and his wife Jan, enjoyed a nice day in Epcot.

    April  – after much negotiation, we accept offer on Tennessee home.

    May – inspection of Tennessee home reveals more problems and we start another agonizing negotiation.

    May  – finally agree to reduce price of Tennessee home to facilitate the sale and get it over with.

    May – in  Memphis for Grandson Garrett’s graduation from Rhodes College.  He graduated Summa Cum Laude and will attend Wake Forest Medical School next.

    May  – painted the great room in new house in anticipation of some new furniture delivered on the 23rd.

    May – left Sarasota for Colorado, Arizona and California to attend graduations and visit friends.

    May – closed on sale of Tennessee home!

    May – Attended Grandson Charlie’s high school graduation, what a delightful ceremony. I have never seen him happier than he was on graduation day!

    May – visited with friends and relatives in the Denver area.

    June – Arrived in Aspen to visit friends and we got them excited about playing tennis – it is interesting to play at 8100 feet above sea level!

    June – Arrived in Sierra Vista, AZ to visit friends

    Coming up June 9th – off to San Diego to visit son Ryan, daughter in law Sarah and Grandson Julian who will also be graduating high school next week.

    You may have noticed that there is no mention of a trip to NYC for the Parkinson’s Unity Walk in April.  With all of the problems with the Tennessee house along with the move into the new house and the upcoming travel, I decided to lower my stress level a bit and opted out of the Patient Advocacy Group.

    And of course, we continued to keep up our exercise routine as much as possible, playing tennis 2 -3 times a week and cycling twice a week along with the PD in Motion class.   So there you have it, all the excuses I could think of for why I haven’t posted in the last 75 days or so.  By the way, this delay does not set the record for not posting, that dubious record was set last year when I went 126 days between April and August.

    About two months ago, I felt that my medication was wearing off about 30 – 45 minutes before the next dose.  I tried a one week experiment increasing my Sinemet to 2 pills 4 times per day which eliminated the problem for the most part.  So I emailed my Doctor in Nashville (no, I haven’t changed to a local doctor yet) who agreed to the change.  So it’s been almost five years with only two changes to my medication and I firmly believe continuing to exercise  is the key.  In fact, we are traveling with our tennis rackets and have played tennis almost everyday on this trip.  Our tennis coach in Sarasota had recommended we purchase new rackets that would fit our grip and our game so this has been a good opportunity to play with the new rackets and get comfortable with them before we return to Sarasota on June 18th.

    That brings things up to date for now,  I will start working on my next post soon where I want cover some of the latest news about Parkinson’s Disease research.  The plan is to publish that post in the next two weeks.  I hope that setting a goal will make it happen!

    One last note – It Is What It Is was recently named one of 10 Parkinson’s Blogs to Keep you Fit and Positive by EverydayHealth.com.  I am honored to be included on this list with several of the bloggers that I already follow and some new ones that I will be adding to my list.

    Thanks for reading.

     “It does not matter how slowly you go as long as you do not stop.” – Confucius

  • The Saga Continues!

    Wow what an interesting month.   Believing our home in Tennessee would be ready to put back on the market by the first of March, we flew to Knoxville to meet with the contractor’s quality control person, approve the work and put the home back on the market.  When we arrived at the home, we discovered it was a long way from completion!  To say we were disappointed would be an understatement for sure.   The quality control person was just as surprised as we were and started calling people to find out why it wasn’t done.  This unleashed a series of phone calls and emails with everyone pointing fingers at someone else because it was not their fault. Then to add insult to injury, the water heater gave out and leaked on the new floor, requiring them to pull up part of the floor and dry it out before laying new flooring and replacing the water heater.

    After much back and forth the new date was set to the 17th of March but on the 15th I got a call from the project manager to let me know he has fired the crew that was working on the house and hired a new crew that would start on the 19th so the new finish date will be the 23rd, but I’m guessing that won’t happen either. (UPDATE: received call that home is ready for walk through  on Monday the 26th!) What a long and winding road!

    In the meantime, thinking it was about over, we have been home shopping here in Sarasota and found the perfect home for us at a great below market price.  We put in an offer which was accepted and we are set to close March 30th!  The home includes some of the furniture which will allow us to set up shop immediately while we wait for the proceeds of the Tennessee sale to purchase the finishing touches.  Luckily our son and daughter in law and two grandchildren arrive on Sunday the 1st of April and they will help us make the move.  Angelina, the 13 year old grand daughter is ready to organize the move and placement of items while Ariana, the 11 year old, said she would do anything we needed as long as there were snacks. 

    With all that is happening we have continued our exercise routine of tennis, spin bike, gym, dance and more tennis.  Mara is playing tennis almost every day while I play at least three times a week.   Our peddling instructor, Kathy, has embraced the high intensity interval training (HIIT) model that has recently been shown to improve symptoms better by pushing our heart rates into the peak zone (85% of max) during each interval.   We have been getting quite the workout the past few months with HIIT on Tuesdays and aerobic base and endurance work along with a bit of HIIT on Thursdays. 

    April is Parkinson’s Awareness month and we will be attending/participating in a couple of events during the month.  There will be a day long PD Expo here in Sarasota and our PD in Motion dance class will be performing a routine we have been rehearsing each Monday during class.  I continue to have two left (or maybe two right?) feet but it is another enjoyable hour of exercise each week and Lynn, our instructor, just smiles as I bumble my way around trying to remember which right foot to use.

    I have been asked to join a Patient Advisory Council for a Pharma company and we will hold our first meeting the day before the  Unity Walk in Central Park on April 26th.  For more information about the Unity Walk and how you can support us, click here. 

IT IS WHAT IT IS!

Seasons Greetings!

Hard to believe the year is almost over!  It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule.  In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.

Happy Holidays!

Tom and Mara

Other Posts

IT IS WHAT IT IS!

Seasons Greetings!

Hard to believe the year is almost over!  It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule.  In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.

Happy Holidays!

Tom and Mara

Other Posts

Year: 2015

  • Seasons Greetings!

    Hard to believe the year is almost over!  It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule.  In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.

    Happy Holidays!

    Tom and Mara

  • Giving Tuesday is Almost Here!

    Tuesday, December 1st is Giving Tuesday. Black Friday is over and Cyber Monday is almost over and Tuesday will be a great opportunity to take some (or all) of the money you saved this weekend and give back by making a donation to a Parkinson’s Disease organization or another cause of your choice. As in past years, many charitable organizations have a matching plan that will double your Giving Tuesday donation for double the benefit.

    In case you need a little inspiration, I am reposting the following article “What is a Parkie? And Why are They so Expensive?“.  This article was written by Alan Zimmerman vice president of the East Tennessee Parkinson’s Support Group and posted on their website,  PK Hope is Alive . Alan is a strong and active advocate for Parkinson’s research and education. In addition to being Vice President of the group, he is the Assistant Tennessee State Director for the Parkinson’s Action Network (PAN) and a member of the Parkinson’s Disease Foundation (PDF) People with Parkinson’s Advisory Council.

    Take some time on Tuesday and support the cause of your choice,  There is a lot of exciting news on the research front and our donations can make a difference!  Happy Holidays!!

     

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
     

     

    WHAT IS A PARKIE? AND WHY ARE THEY SO EXPENSIVE?
    by Alan Zimmerman
     
    Parkies are expensive devils.  How does $25 Billion per year in the US sound to you?  Not only that,we discover another 60,000 Parkies each year, right here in good old America.  That number that is guaranteed to rise.  And, each Parkie spends about $2500 per year trying to be less Parkie with an assortment of medications and untold more on supplements.
    So, what then is a Parkie?  It is what people with Parkinson’s disease call each other.  Yep, the term is pretty much reserved for those in the Parkie club.  They would rather be known by everyone else as people with Parkinson’s (PWP).
    I know that you know someone who is a PWP.  You may even have a relative with PD.  You have seen them taking short steps and all bent over and very stiff and slow, or maybe they are using a walker to get around or perhaps they shake uncontrollably.  Maybe you can’t hear or understand them when they talk.  Perhaps you, nor they can read their handwriting.  The list goes on and on.
    Who gets this disease?  Men are slightly more likely and most people are in their 60’s when diagnosed.  But, about one in ten are 45 or under.  By the time your symptoms are bad enough to be diagnosed, one has already lost more the 60% of their dopamine.  You see, that marvelous thing called a brain compensates until it no longer can.  Unfortunately, that is not the blessing it seems to be.  As more interventions are developed, the sooner the diagnosis, the better.
    Wait!  We have new terms: diagnosis and dopamine.
    Let’s take “diagnosis” first because most everyone has had at least one of those.  In the case of Parkinson’s there is no definitive way of diagnosing except by physical exam.  And, it really needs to be done by a neurologist who specializes in movement disorders.  There is no blood test or scan that will determine for sure that the monster called PD has attacked.
    What’s “dopamine?”  It is a chemical found in the brain.  What does it do?  Lots of things that we know about and probably some yet to be discovered.  For one, it is a communicator.  Somehow it signals the muscles to do whatever the brain tells them to do.  It also has something to do with mood, pleasure, depression and many other important functions.
    What causes this PD thing?  Nobody knows for sure but most scientists believe it is probably a combination of genetics and something in the environment, like heavy metals, toxins, or pesticides that trigger the beginning of the disease.  That is pretty much where science is.  OK, so where does it start?  Nobody is sure where exactly but some of the latest thinking is that it starts in the gut or maybe even the intestines.
    So, bottom line, what is the cure?  There isn’t one.  It just gets worse over time as more brain cells die.  OK then, what is the treatment?  Mostly, at this stage in modern medicine, only symptoms can be treated.  A few things may slow it down like exercise programs.
    We also have this thing called Deep Brain Stimulation (DBS).  Hold on, what’s that?  It may scare you if I tell you but here goes.  DBS is where a PWP has one or preferably two holes drilled in the scull.  Then you insert electrodes into certain places in the brain.  Then, you attach all that to a battery which is eventually buried into your upper chest.  Oh, I forgot to tell you.  Usually the patient is awake when those electrodes are being put in place.  Why?  So that the neurosurgeon can get feedback from the PWP.
    So, I guess we need more research.  There is a bunch going on world-wide, but we could always use more.  Researchers eat and have families and require laboratories.  What that means is that research has a price tag.  What a price tag means is that more donations are required.
    What else is needed?  More movement specialist physicians for one.  There are not enough now and certainly too few going to school while the Parkie population increases.  So, we need to encourage doctors to devote an extra two years of their life learning the intricacies of movement.  Guess what?  That too carries a pretty hefty price tag.  So, we need more scholarships which means we need more donations yet again.
    So, let’s review.  People with Parkinson’s are growing in numbers rapidly.  The disease is progressive and degenerative.  So far, we can pretty much treat the symptoms only.  But, through massive research, we believe that disease altering therapies are going to become a reality pretty soon.  What is pretty soon?  Maybe 5-10 years.  But, that only happens with support for research, i.e. donations.

  • Happy Thanksgiving!

    Just a quick post wishing everyone a Happy Thanksgiving from Seattle.  I have much to be thankful for this year including:

    • making a change to a Movement Disorder Specialist who recommended a medication change that resulted in a great reduction of my symptoms;
    • and that improvement allowed me to increase my exercise time which also helped to reduce rigidity and increase my mobility; 
    • and the increased mobility gave us a chance to travel to visit family and friends across the country;
    • and I got to fish almost every day I was home without having to sit down after 15 minutes to rest!

    But most of all I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my wandering posts.  I hope I have provided information of value to PwP’s and others through this blog and the Tennessee Parkinson’s Resources site that we started this year.

    Thank you all and Happy Thanksgiving!

     

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