• 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!

Beach Time is the Best Time!

We are on our third week of hanging at the beach in Siesta Key, FL  We were scheduled to leave on March 1 but decided to add one more week.  We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.

While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.

We have also joined up several times with Joel Gordon and his wife Rabbi Melissa Wenig whom we first met at the Kripalau Wellness Retreat last October. They came down from Cambridge, MA in January and are staying until May. It has been a great opportunity to discuss how Parkinson’s has impacted our lives with another PwP.  One of our outings was to the Venice Rookery, a small island on a small lake in Venice where hundreds of Egrets, Herons and other birds roost at night.  We went at sunset and watched the flocks fly in from where ever and take up residence in the bushes on the island.  This picture gives you an idea but doesn’t do justice to the whole experience.

 

After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!

The warm weather has been  great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice.  We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch!  I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.

We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim.  The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂

In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach.  We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!

We head home Saturday and hope that spring arrives at the same time 🙂

Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”

Other Posts

IT IS WHAT IT IS!

Beach Time is the Best Time!

We are on our third week of hanging at the beach in Siesta Key, FL  We were scheduled to leave on March 1 but decided to add one more week.  We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.

While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.

We have also joined up several times with Joel Gordon and his wife Rabbi Melissa Wenig whom we first met at the Kripalau Wellness Retreat last October. They came down from Cambridge, MA in January and are staying until May. It has been a great opportunity to discuss how Parkinson’s has impacted our lives with another PwP.  One of our outings was to the Venice Rookery, a small island on a small lake in Venice where hundreds of Egrets, Herons and other birds roost at night.  We went at sunset and watched the flocks fly in from where ever and take up residence in the bushes on the island.  This picture gives you an idea but doesn’t do justice to the whole experience.

 

After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!

The warm weather has been  great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice.  We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch!  I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.

We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim.  The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂

In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach.  We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!

We head home Saturday and hope that spring arrives at the same time 🙂

Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”

Other Posts

Tag: Travel

  • Beach Time is the Best Time!

    Beach Time is the Best Time!

    We are on our third week of hanging at the beach in Siesta Key, FL  We were scheduled to leave on March 1 but decided to add one more week.  We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.

    While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.

    We have also joined up several times with Joel Gordon and his wife Rabbi Melissa Wenig whom we first met at the Kripalau Wellness Retreat last October. They came down from Cambridge, MA in January and are staying until May. It has been a great opportunity to discuss how Parkinson’s has impacted our lives with another PwP.  One of our outings was to the Venice Rookery, a small island on a small lake in Venice where hundreds of Egrets, Herons and other birds roost at night.  We went at sunset and watched the flocks fly in from where ever and take up residence in the bushes on the island.  This picture gives you an idea but doesn’t do justice to the whole experience.

     

    After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!

    The warm weather has been  great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice.  We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch!  I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.

    We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim.  The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂

    In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach.  We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!

    We head home Saturday and hope that spring arrives at the same time 🙂

    Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”

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