• Welcome 2021!!

    Happy New Year!!  I don’t know about you but I have never been so happy to leave a year behind.  It has been a year of trials and tribulations and wrinkled hands from so much washing.  We have averaged  5 – 7 books per week since March, lived through almost 3 months with no tennis and discovered Zoom can be used for just about everything from exercise classes to family gatherings.  

    We have survived not eating out unless we can eat outside, wearing a mask everywhere you go, and not hugging.  We go nowhere except to the grocery store and the tennis court which has reduced gasoline use and carbon in the air.  

    I could go on and on about what we will not miss about 2020 but we did learn some lesson from 2020. I received this list from a good friend and reader of this blog  and I thought I would pass it along to you all.  

    It has been about 5 months since  my last post but with the COVID-19 restrictions there is very little news to report.   As noted above, we have been playing tennis with a small group (our pod) and the ever resourceful Pedaling for PD instructor Kathy has been teaching classes 3 days a week via Zoom.  I purchased a spin bike for home in order to keep up with the exercise as much a possible.

    I finally had a face to face visit with my neurologist in October which went well with no changes to medications or routines.  I also met with a speech pathologist and we decided the Speak Out! program would be beneficial as my voice has been getting softer and softer requiring me to repeat myself often.

    Speak Out! is a program where you meet one on one  with the speech pathologists three times  a week for four weeks  and learn to speak with intent!  The sessions were very focused on improving the volume of my voice using breathing exercises, visualising projecting my voice and practicing going from low to high and back while saying ahhhh.  In addition to the voice exercises, they also have cognitive drills for each lesson and a reading aloud exercise.  I found the program to be very beneficial and I have continued to work at speaking with intent everyday. 

    We spent the holidays at home with no family visitors for the first time that we can remember.  Hopefully next year we can return to normal as the vaccine is rolled out.

    Speaking of the vaccine, through a combination of serendipitous events, Mara and I received the first Moderna shot last week and are scheduled for the second shot in early February.  Sarasota county opened appointments for persons 65 and over using an online reservation system.  Because I had signed up for text messages from the county back in March, I received a text message that they were taking appointments and was able to schedule both of us before they were filled up.  The process worked very smoothly when we arrived at the County Health Department.  While there was a long line, it turned out they were people without an appointment hoping to get the vaccine  by waiting. 

    Since we had an appointment, we went to the head of the line and were in and out in approximately an hour including a 15 – 20 minute observation period after the shot.  So far we have had no major complications beyond some pain at the injection site.  I will update you when we get the second shot as I have heard that is when they expect more minor complications will occur since your body has been making antibodies to fight the virus.

    A reminder – if you haven’t already joined PD Avengers, please click here and add your name to the list of supporters.  We are hoping for 1 million supporters by 2022 and together we are fighting to END PARKINSON’S!

    I hope this post finds you healthy and not totally bored out of your mind.  Please mask up, practice social distancing and stay safe! 

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

     

      

     

  • Join PD Avengers & Let’s End PD!

    Last  month  marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist.   During the past 7 years  I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD,  and moved to Florida.

    Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD.  A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive.  The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming  pandemic and action needs to be taken to end PD. You can read my blog post about the book here.

    Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat)  a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s.  They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s.  I have added my voice and have become a PD Avenger and I hope you will too!  You can find out more information and add your voice at PDAdvengers.com.  Together we can END PARKINSON’S!!

  • Sample Posts #4

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    Fermentum et sollicitudin ac orci phasellus egestas tellus. Amet dictum sit amet justo donec enim. Iaculis nunc sed augue lacus viverra vitae. Pharetra pharetra massa massa ultricies mi quis hendrerit dolor magna. Vel fringilla est ullamcorper eget nulla facilisi etiam dignissim diam. Nisi porta lorem mollis aliquam ut porttitor. Vel turpis nunc eget lorem dolor. Lacinia quis vel eros donec ac odio tempor orci dapibus. Mi sit amet mauris commodo quis imperdiet. Porta nibh venenatis cras sed felis. Phasellus faucibus scelerisque eleifend donec pretium vulputate sapien nec sagittis. Volutpat ac tincidunt vitae semper quis lectus nulla.

    At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.

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    Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.

It’s Clinical Trial Awareness Week

Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met.  Amazing how life changes isn’t it?

Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder.  But then what?  You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure!  But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug.  Oh and that is the same problem with your second choice too!

Oh look, a soap box….

I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants.  Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug.  Presto, no longer eligible for many trials, at least while in the early progression of PD.

I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs.  But, what if the combination produces a better result?  Already many of us take two or more drugs  to treat all of our symptoms and improve our quality of life.  So here’s my idea..

Why not include some already medicated volunteers in the study design?  For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex?  It might require some tweaking of the dosage of the drugs but you have another 100 participants  in your trial.  Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.

 …..OK, off the soapbox.

 
Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!
 
As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.
 “It does not matter how slowly you go as long as you do not stop.” – Confucius

 

 
 

It’s Clinical Trial Awareness Week

Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met.  Amazing how life changes isn’t it?

Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder.  But then what?  You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure!  But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug.  Oh and that is the same problem with your second choice too!

Oh look, a soap box….

I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants.  Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug.  Presto, no longer eligible for many trials, at least while in the early progression of PD.

I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs.  But, what if the combination produces a better result?  Already many of us take two or more drugs  to treat all of our symptoms and improve our quality of life.  So here’s my idea..

Why not include some already medicated volunteers in the study design?  For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex?  It might require some tweaking of the dosage of the drugs but you have another 100 participants  in your trial.  Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.

 …..OK, off the soapbox.

 
Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!
 
As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.
 “It does not matter how slowly you go as long as you do not stop.” – Confucius

 

 
 

Tag: Parkinson’s Disease

  • It’s Clinical Trial Awareness Week

    Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met.  Amazing how life changes isn’t it?

    Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder.  But then what?  You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure!  But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug.  Oh and that is the same problem with your second choice too!

    Oh look, a soap box….

    I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants.  Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug.  Presto, no longer eligible for many trials, at least while in the early progression of PD.

    I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs.  But, what if the combination produces a better result?  Already many of us take two or more drugs  to treat all of our symptoms and improve our quality of life.  So here’s my idea..

    Why not include some already medicated volunteers in the study design?  For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex?  It might require some tweaking of the dosage of the drugs but you have another 100 participants  in your trial.  Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.

     …..OK, off the soapbox.

     
    Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!
     
    As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.
     “It does not matter how slowly you go as long as you do not stop.” – Confucius

     

     
     
  • Dancing and Singing at the Beach!

    Dancing and Singing at the Beach!

    It’s been a busy couple of weeks and I know everyone is waiting for an update from the beach 🙂 As I mentioned in the last post we were planning a Kripalu mini-reunion with Joel and Melisa and Marcia and Erwin and we were able to get together for lunch and then a nice visit while sitting on the beach.  As Marcia said later, “..it felt like connecting with very close family.” We all caught up on what has happened since October 2013 which, of course, included what medications we were taking, comparing notes on doctor visits, etc.  Marcia and Erwin along with another couple from our Kripalu visit are staging the first Pocono FoxTrot 5K for Parkinson’s with the proceeds going to the Michael J Fox Foundation.  If you are going to be in the Pocono’s area June 20th, you can sign up for the 5K run/walk, the 1 mile community walk or the Kids 1 mile run/walk at this link.
     

    A few days later, we attended our second Parkinson’s Cafe event, a backstage tour of the Sarasota Ballet.  This tour included a chance to watch the ballet master conduct training for about 30 cast members and students which was fascinating, they just flew across the room executing jumps and turns like they had wings!After the tour, we participated in a PD in Motion class, a dance/exercise class for PD patients which is conducted every week by the Neuro Challenge Foundation here in Sarasota. The program was started in NYC and has expanded nationwide.  As you can see, most of the exercises were done sitting down and involved moving legs, arms, and torso.  We really enjoyed it and we attended the next class and will catch a couple more before we leave the beach.

    And this week we attended a choral singing class, also sponsored by the Neuro Challenge Foundation.  Called the Off Key Choir about 45-50 of us sang some Irish tunes since it was St Patrick’s day, and, by the end we did it in 4 part harmony! This was a great way to learn breathing and speech techniques to help with the soft voice of PwP.  It was great fun and we are happy Merrily and Robert Manthey told us about it and invited us to attend.

     
    We met Merrily at the Parkinson’s Cafe event and she told us how a year ago, she was in a wheelchair but no longer needs it after participating in the exercise programs provided by the Sarasota Memorial Hospital Healthfit Gym.  In fact her story was featured in the February 2015 edition of Sarasota Magazine.  Merrily is an outstanding example of how exercise can help fight PD.  Mara and I are convinced that increasing my exercise time has reduced my symptoms and I’m looking at other exercise programs that might provide additional benefit, you can expect to hear more about that project in the next post.
     
    We also had a nice visit with Tom and Marilyn, our friends from Colorado, the weather was great and we got in our long walks every morning and beach time every afternoon and took in a play at the Aslo Theater.  Good Times, Good Times!
     
    Recently Sage Bionetworks announced an app called mPower, as part of the Apple iPhone Research Kit.  Currently only available for the iPhone, mPower will gather information daily from users which will feed into a database for analysis.  At the same time the Michael J Fox Foundation announced Fox Insight, an online clinical trial for both PwP’s and those without PD who will complete a series of surveys every 90 days regarding their health, symptoms, medications, etc. You can link it to your Fox Trial Finder profile during the sign up process and soon you will also be able to  link to the mPower app information.  It is easy to enroll and takes only about 20 – 30 minutes to complete the surveys plus you can print a  report of the results to take along on Doctor visits.
     
    Until next time..oh wait I forgot to remind you to sign up for Fox Trial Finder and now Fox Insight!
     
     “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • Increasing the Exercise Routine

    Increasing the Exercise Routine

    Our first week at the beach is already over. 🙁 Last Saturday we attended the Parkinson’s Symposium sponsored by The Neuro Challenge Foundation and Sarasota Memorial Hospital. This is an annual event with 500+ attendees and included talks by recognized PD experts followed by a Q & A session afterwards. In between the talks we did two mini exercise sessions which included some voice exercises from the Loud portion of the Big and Loud program. We were joined at the meeting by Joel and Melissa whom we first met at Kripalu and then again here at the beach last year.
    At the meeting we met Brad and Lynn Schramek who founded the Parkinson’s Cafe for the purpose of providing social, cultural and intellectual interaction for people with Parkinson’s disease and their families. This years events include a visit to the Asolo Repertory Theatre and a visit to the Sarasota Ballet. Both agendas look interesting so we have signed up to attend them both.
    This week NPR (among others) talked about the benefits of exercise for Parkinson’s and so did all of the speakers at the Symposium. Since we arrived we have upped our exercise routine to include at least an hour walking plus Qi Gong and Tai Chi.  During my recent Doctor visit, we discussed my lack of arm swing while walking and he suggested using walking poles to improve my posture and arm swing while walking. So this week I took delivery of a pair of Green Zen Nordic walking poles from York Nordic and they definitely help with the arm swing, posture and pace.  I also started the Sinemet (Cardidopa/levodopa) at the beginning of the week and
    I have noticed reduced rigidity and shuffle along with the  improved walk times over last
    year’s beach visits.
    Also this week we have signed on to be Fox Trial Finder Ambassadors, which I’m sure comes as a surprise to regular readers 🙂 We are looking forward to helping spread the word about the importance of participating in clinical trials at support groups, events, informal meetings, and any other opportunities we get, like this blog.
    This weekend, our granddaughters (oh and their parents) arrive from Seattle for a week of beach fun so I’m thinking it will be another fun and busy week!  Thanks for reading.
    “It does not matter how slowly you go as long as you do not stop.” – Confucius