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!!

When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

Year: 2015

Anniversaries abound!

When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

August 8, 2015
What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August! Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July. Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week. They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of Fox Insight. The program is open to PwP with an Android phone. They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app. Currently they are tracking my activity and tremor via the watch. The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis. The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks. Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight. No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

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

July 20, 2015
On the Road Again!

Yes,we are on the road again. We are working our way to San Francisco to attend a wedding which will also be another 3M reunion. I say working our way because we left home at 8:45 AM for a 10:50 flight to Houston for our connection to arrive in San Francisco around 5pm. But the Houston flight was delayed and we would miss our connection. Sam, a very helpful United employee, was able to get us on a US Air flight to Philadelphia leaving at 3pm and connecting to a San Francisco flight arriving at 9pm.

So, with plenty of time to kill, we took a walk around the airport and on the way back to our gate I see that the Philadelphia flight was delayed and we would again miss our connection! So back to Sam at the United desk where they were able to get us on a 3:55pm US Air flight to Charlotte for a connection arriving in San Francisco at 8:30.

With more time to kill, we decided to get some lunch and on the way back to the gate we see the Charlotte flight is delayed 30 minutes! This meant,if we left at the new scheduled time, we will have 20 minutes to change terminals. A small challenge for me and Dr. Parkinson but all that walking we have been doing paid off and we are in the air, bouncing our way to San Francisco.

Once we get there,we will have a new challenge,finding the little house we are renting in Bolinas, north of San Francisco,in the dark!

Well it is the next day and we are sitting in the little house we rented looking out at the ocean as you can see in the picture. We finally arrived here around midnight and this morning we took a nice walk down to town for some breakfast and a walk on the beach. Good times, good times.

After the wedding and 3M reunion we are going to Sonoma for a couple of days where we will meet up with son Ryan and his wife Sarah for some wine and beer tasting and probably some fine dining. More good times.

This week I finally completed the long promised list of blogs and bloggers I follow. Click on the tab at the top of the page and check it out. Next I hope to work on the post about exercise. Last week the results of a longitudinal study were released showing the benefits of exercise for Parkinson’s patients. Here is a portion of the press release:

SAN DIEGO – Regular exercise and increasing physical activity is associated with a slower decline in quality of life in Parkinson’s disease (PD) patients, according to a study released today at the 19th International Congress of Parkinson’s Disease and Movement Disorders. This study evaluated 2,940 patients from 20 sites affiliated with the National Parkinson Foundation Quality Improvement Initiative. The cohort was assessed using the Parkinson’s Disease Questionnaire (PDQ-39), and patients were measured at baseline, 1 year, and 2 year follow up appointments. Those who were classified as non-exercisers at baseline and began to exercise after their initial visit had significantly less worsening of PDQ-39 than non-exercisers. Ultimately, the study found that increasing physical activity greater than 2.5 hours of exercise per week is associated with a slower decline in total PDQ-39 scores.

Michael Okun, Professor of Neurology at the University of Florida Center for Movement Disorders and Neurorestoration states, “This study makes clear that everyone with Parkinson’s should be exercising. This longitudinal study of patients selected without exclusions shows that patients suffer from delaying starting their exercise program. It doesn’t seem to matter what they do, they benefit from just getting up and out and from moving.” Okun adds, “This study adds to mounting evidence that exercise is good and sooner is better than later.”

I can certainly attest to the benefits of exercise and we are trying to average at least 5 hours a week so maybe I’ll get double the benefit! Hopefully that post won’t take as long as the blog list! In the meantime, check out some of the blogs on my list while you are waiting for my next post and don’t forget to sign up for Fox Trial Finder and the Fox Insight trial. Remember, they need control subjects too, not just Parkinson’s patients so sign up!

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

June 19, 2015