• Oracle TEAM USA Wins the America’s Cup!

    In one of the greatest comebacks in sports history, Oracle Team USA won eight straight races to win the 34th America’s Cup 9 races to 8 after being down 8-1 to Emirates Team New Zealand. Watching them race over the last three weeks you realize what team work it takes to sail a 72 foot catamaran with a 150 foot ‘wing’ sail at speeds over 40 miles an hour on San Francisco Bay.  In fact, at the end of the winning race today, the Team USA helmsman Jimmy Spithill tweeted a comment from his interview after the win  “On your own you’re nothing but when you’ve got a team like this around you, they make you great”.

    I feel the same way about dealing with Parkinson’s, you need a team to make you great.  The team includes your Movement Disorder Specialist, your regular doctor and should probably include a physical therapist, an occupational therapist, a speech therapist and maybe a nutrition specialist. As you can see, it takes a village to deal with the many symptoms and issues with Parkinson’s disease, just like raising a child.

    But as important as your medical team is, the support of my wife, my children and their spouses, my grandchildren, my sisters and a multitude of relatives and friends is just as needed.   I am lucky to have their support, words of encouragement and positive thoughts. As Jimmy Spithill said, I would be nothing without the support of my ‘TEAM’. Thank you all for all you do to help me weather this journey.

    I’ve had about a week on the new dose of medication three times a day and continue to see good improvement in walking and balance.

    This weekend our friends Tom and Marilyn visited from Colorado and we had a great time on the lake cruising, swimming, and catching this shot of the harvest moon rise on the water.  A grand time was had by all.

    One last reminder, don’t forget the Michael J Fox show premieres this Thursday 9/26/2013.

     

  • Parkinson’s Is Not Just Tremors

    “Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor.” 
     
    “This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street, all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”
    Steve Ford, chief executive at Parkinson’s UK
     

     

    I heard these quotes during an interview on BBC Radio the other night and then looked it up on their website. The story is accompanied by a video interview which can be read and seen here.  They recount a study conducted in the UK showing that PWP suffer discrimination because of symptoms other than tremors including the slow gait and balance issues that sometimes make me look like I’ve had one too many before 10 am.  I’ve noticed people looking at me like I might be drunk as we walk into the grocery store and it appears from this study that even if I wore a shirt that said ‘I have Parkinson’s’ they still might think I was inebriated.

    Thanks to the National Parkinson’s Foundation, I carry a card that helps to explain the symptoms and covers various drug interactions in case I need emergency care.

     
     
    The non-tremor symptoms such as slurred speech, facial mask (unable to show expressions), freezing in place, and tipsy gait among others are the little known part of this disease for the general public.  I did not realize how complex this disease can be until I starting researching after my diagnosis but I certainly have a greater understanding now.  I hope that readers of this blog do too.
     

     

    I had a follow up visit with the neurologist last week and he decided to double the medication dosage from .125 to .25 so I have started the increase with my midday dose and then will add the morning and night doses over the next week or two.  The one thing we have already noticed is my soft voice gets stronger after the .25 dose and the balance problems decrease so I am hopeful that .25 three times a day will result in reduced motor symptoms too.  I also received a prescription for physical therapy which we hope will help with the gait issues among others.
     
    I’ve also started a spreadsheet to track symptoms after reading a blogpost by another PWP on the Michael J Fox blog.  I think it is an excellent idea and should be very helpful when meeting with the doctor.  And speaking of Michael J Fox don’t forget his show premiers September 26th.

  • I’m Alright, Just Slow!

    I find myself uttering this remark far too often already 🙂  Unfortunately it was the first of my noticeable symptoms and the one that is still present, even with the improvements from the medication.  While my normal walk in the county park next door has gone from 42 minutes down to 37 minutes since I started the medication, I still have my slow times during the day.  I guess even the walk is still slow, used to be able to complete in 34 minutes a year ago.

    There are many research studies that show exercise helps to slow the progression of PD symptoms so I have been exploring some options in addition to my daily walk.  I have found that the local Tai Chi group has weekly Health Recovery sessions so we plan to give that a try in the next week or so. The instructor said the Health Recovery class is for students who want to address particular health issues with Tai Chi, and also for those who are not able to take the regular beginning class.  The class focuses on a number of exercises rather than on learning the Tai Chi set.  She also indicated that many PWP are able to take the beginning class depending on the severity of their symptoms.  So we’ll start with the Health Recovery class to see how my balance issues effect the training and go from there.  Will give you an update in a future post.

    We also discovered that the National Parkinson Foundation sponsors a retreat every October for newly diagnosed PWP (less than 5 years) and we were able to get into this years offering at the Kripalu Retreat in Stockbridge, MA.  The retreat is the third week of October and covers many topics including yoga, nutrition, medication, exercise, etc.   The retreat is designed for both the PWP and their caregiver so we are excited we are able to attend.

    It’s been a busy couple of weeks since my last post, Mara had her second successful cataract surgery, we celebrated grandson Jacob’s 9th birthday and enjoyed a brief trip to Pickwick Landing state park in the southwest corner of Tennessee to meet up with good friends from Colorado who were attending a family reunion.  And of course we enjoyed many sunsets from the screen porch and a relaxing boat ride on the lake.  I may be slower but Life is good!

    PS Don’t forget the Michael J Fox show, premiering September 26th!!

IT IS WHAT IT IS!

Time Flies

May seems to be going  has gone by awfully quickly, here it is Memorial Day June 1 and it seems like we just got home from our West Coast tour last week, not 5 weeks ago.  It’s been a busy time since we returned including Doctor appointments (annual physicals), catching up our volunteer work for Project Linus and getting ready for Spring.

Spring did finally arrive (more or less) and we took the pontoon out for the first time not long after we got home and it was great to be able to get back out on the water.
We also started getting ready for our oldest grandson Garrett’s high school graduation including adding a few hanging plants to the yard and having Mara’s son Darrin help with painting, yard work, and launching the pedal boat before our visitors arrived.  Our youngest grandchildren, Angelina and Ariana, arrived from Seattle (oh they did travel with their parents Dale and Monica) a few days before the big event.

We are very proud of Garrett – he was a varsity soccer player, a National Merit scholarship winner and a diploma candidate in the International Baccalaureate  program.   After visiting many college campuses over the last couple of years he has decided to join his sister Breanna and attend Rhodes College in Memphis where he will  also play soccer for the Lynx.

We had a great time with our visitors.   In addition to attending the graduation and subsequent festivities, we all spent a day at Dollywood, Dolly Parton’s amusement park in Pigeon Forge, near Smoky Mountains National Park.  The weather wasn’t perfect but we didn’t let the rain dampen our spirits and a good time was had by all.

We had a day of great weather for being on the lake and doing some tubing and some fishing.  They left before Memorial Day and we spent a quiet (and wet) holiday weekend getting in our walks and catching up on a few to-dos including finishing my Introduction to Genetics course.  I really enjoyed the course, my first online learning experience and I would recommend it if you have an interest in genetics.

Next up, my daughter Holly and grandchildren Charlie and Kayla arrive from Colorado Springs on Tuesday and I expect more tubing, fishing and maybe another trip to Dollywood will occur during their visit.

On the Parkinson’s front, I am still working thinking about adding a page with a list of the blogs I follow but in the meantime here is a list of Parkinson’s Disease blogs posted on The Bachmann-Strauss Dystonia and Parkinson Foundation website.  I am honored to be on their list which also includes many of the blogs that I follow and has pointed me to some new ones to add to my list.

Other Posts

IT IS WHAT IT IS!

Time Flies

May seems to be going  has gone by awfully quickly, here it is Memorial Day June 1 and it seems like we just got home from our West Coast tour last week, not 5 weeks ago.  It’s been a busy time since we returned including Doctor appointments (annual physicals), catching up our volunteer work for Project Linus and getting ready for Spring.

Spring did finally arrive (more or less) and we took the pontoon out for the first time not long after we got home and it was great to be able to get back out on the water.
We also started getting ready for our oldest grandson Garrett’s high school graduation including adding a few hanging plants to the yard and having Mara’s son Darrin help with painting, yard work, and launching the pedal boat before our visitors arrived.  Our youngest grandchildren, Angelina and Ariana, arrived from Seattle (oh they did travel with their parents Dale and Monica) a few days before the big event.

We are very proud of Garrett – he was a varsity soccer player, a National Merit scholarship winner and a diploma candidate in the International Baccalaureate  program.   After visiting many college campuses over the last couple of years he has decided to join his sister Breanna and attend Rhodes College in Memphis where he will  also play soccer for the Lynx.

We had a great time with our visitors.   In addition to attending the graduation and subsequent festivities, we all spent a day at Dollywood, Dolly Parton’s amusement park in Pigeon Forge, near Smoky Mountains National Park.  The weather wasn’t perfect but we didn’t let the rain dampen our spirits and a good time was had by all.

We had a day of great weather for being on the lake and doing some tubing and some fishing.  They left before Memorial Day and we spent a quiet (and wet) holiday weekend getting in our walks and catching up on a few to-dos including finishing my Introduction to Genetics course.  I really enjoyed the course, my first online learning experience and I would recommend it if you have an interest in genetics.

Next up, my daughter Holly and grandchildren Charlie and Kayla arrive from Colorado Springs on Tuesday and I expect more tubing, fishing and maybe another trip to Dollywood will occur during their visit.

On the Parkinson’s front, I am still working thinking about adding a page with a list of the blogs I follow but in the meantime here is a list of Parkinson’s Disease blogs posted on The Bachmann-Strauss Dystonia and Parkinson Foundation website.  I am honored to be on their list which also includes many of the blogs that I follow and has pointed me to some new ones to add to my list.

Other Posts

Time Flies

Written by

Tom Eckhardt

in

May seems to be going  has gone by awfully quickly, here it is Memorial Day June 1 and it seems like we just got home from our West Coast tour last week, not 5 weeks ago.  It’s been a busy time since we returned including Doctor appointments (annual physicals), catching up our volunteer work for Project Linus and getting ready for Spring.

Spring did finally arrive (more or less) and we took the pontoon out for the first time not long after we got home and it was great to be able to get back out on the water.
We also started getting ready for our oldest grandson Garrett’s high school graduation including adding a few hanging plants to the yard and having Mara’s son Darrin help with painting, yard work, and launching the pedal boat before our visitors arrived.  Our youngest grandchildren, Angelina and Ariana, arrived from Seattle (oh they did travel with their parents Dale and Monica) a few days before the big event.

We are very proud of Garrett – he was a varsity soccer player, a National Merit scholarship winner and a diploma candidate in the International Baccalaureate  program.   After visiting many college campuses over the last couple of years he has decided to join his sister Breanna and attend Rhodes College in Memphis where he will  also play soccer for the Lynx.

We had a great time with our visitors.   In addition to attending the graduation and subsequent festivities, we all spent a day at Dollywood, Dolly Parton’s amusement park in Pigeon Forge, near Smoky Mountains National Park.  The weather wasn’t perfect but we didn’t let the rain dampen our spirits and a good time was had by all.

We had a day of great weather for being on the lake and doing some tubing and some fishing.  They left before Memorial Day and we spent a quiet (and wet) holiday weekend getting in our walks and catching up on a few to-dos including finishing my Introduction to Genetics course.  I really enjoyed the course, my first online learning experience and I would recommend it if you have an interest in genetics.

Next up, my daughter Holly and grandchildren Charlie and Kayla arrive from Colorado Springs on Tuesday and I expect more tubing, fishing and maybe another trip to Dollywood will occur during their visit.

On the Parkinson’s front, I am still working thinking about adding a page with a list of the blogs I follow but in the meantime here is a list of Parkinson’s Disease blogs posted on The Bachmann-Strauss Dystonia and Parkinson Foundation website.  I am honored to be on their list which also includes many of the blogs that I follow and has pointed me to some new ones to add to my list.

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