• 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!

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

 

 
 

Other Posts

IT IS WHAT IT IS!

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

 

 
 

Other Posts

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

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