• 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!

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Other Posts

IT IS WHAT IT IS!

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Other Posts

Our Sarasota Experiment – Part Two

Written by

Tom Eckhardt

in

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

More posts

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