Welcome Summer!

This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

Welcome Summer!

This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

Category: Friends

  • Welcome Summer!

    Welcome Summer!

    This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

    When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

    In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

    We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

    And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

    In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

    Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

  • Me, a Tennis Hero?

    We met Jean Kirshenbaum when we started playing tennis here in Sarasota with a regular group twice a week.  Jean was not as mobile as some of the players but had an excellent serve and strong ground strokes and you could tell how much she enjoyed playing the game.  Jean had suffered a stoke 15 years ago but had worked hard to return to the game she loved, even if she couldn’t play at the same level she was playing at before the stroke. 

    Earlier this year Jean began to have problems with her gait, her balance and with freezing in place (sound familiar?) which have prevented her from playing with the group.  But Jean is not giving up, she writes columns for a tennis website, and recently wrote one that discussed her current conditions and what she is doing to try and overcome them.  Part of that column includes her surprise when she found out I took up tennis as part of my plan to overcome PD.  She has plans for both of us as you will see when you read her column here.  I am honored that she mentions me in her column and I look forward to seeing her back on the courts soon.

    While we have been busy the past few weeks with visits from grand children, we have continued to play tennis as much as possible and I continue to cycle whenever I can.  Yesterday I discovered a new screen on my FitBit app  that shows my heart rate during exercise.  This screen shot is from today’s cycling session which consisted of a 10 minute warmup and then we continued to add gear while surging back and forth between 80 rpm and 90 rpm.  As you can see our coach has taken the new concept of  high intensity intervals to heart and this work out kept my heart rate in the cardio zone or above for almost the entire time.  What I find most interesting is, despite my thought that I wouldn’t be able to walk out to the car, I did and now, 8 hours later, I feel great and have limited PD symptoms.  There certainly seems be something that works when you exercise at a high level even for a short period of time.  So if you have the opportunity to cycle or box or ????, do it! Exercise is the best prescription we can follow to slow the progression of PD (I know I haven’t said that recently 😆)

     

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

  • Oracle TEAM USA Wins the America’s Cup!

    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.