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.
“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 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!!
We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster. But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂
To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal. It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all! So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries. During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday. We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.
In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil. We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!
A week or so later we were off to San Diego to visit Ryan, Sarah and Julian. We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday. The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.
When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.
We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College. We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year.
In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee. Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists. If it all works as we would like, the Doctor can order additional cards to have on hand for patients. The goal is to let newly diagnosed PwP know they are not alone and resources are available.
So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up. In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!! Click on the button at the top of the page or the Fox Insight icon to sign up. Thanks!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster. But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂
To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal. It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all! So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries. During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday. We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.
In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil. We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!
A week or so later we were off to San Diego to visit Ryan, Sarah and Julian. We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday. The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.
When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.
We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College. We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year.
In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee. Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists. If it all works as we would like, the Doctor can order additional cards to have on hand for patients. The goal is to let newly diagnosed PwP know they are not alone and resources are available.
So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up. In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!! Click on the button at the top of the page or the Fox Insight icon to sign up. Thanks!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster. But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂
To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal. It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all! So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries. During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday. We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.
In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil. We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!
A week or so later we were off to San Diego to visit Ryan, Sarah and Julian. We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday. The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.
When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.
We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College. We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year.
In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee. Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists. If it all works as we would like, the Doctor can order additional cards to have on hand for patients. The goal is to let newly diagnosed PwP know they are not alone and resources are available.
So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up. In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!! Click on the button at the top of the page or the Fox Insight icon to sign up. Thanks!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
We recently attended our second Grand Challenges in Parkinson’s research conference hosted by the Van Andel Research Institute in Grand Rapids, MI. Again this year The Cure Parkinson’s Trust (UK) and Parkinson’s Movement(UK) sponsored the Rallying to the Challenge meeting which is conducted in conjunction with the research conference and provides an opportunity for researchers, patients and caregivers to exchange information. The theme for this year’s Rally was “Outcomes and Measures, a new look at Measuring Parkinson’s” and, as you will see, we had a very full two day agenda.
Tom Isaacs, co-founder of the Cure Parkinson’s Trust, opened our portion of the meeting saying that together we are making a seismic shift for better research, research that includes the patient and the patient’s needs. As a result of last years Rally a ‘Clinical Trials Charter’ (click here to view the charter) was developed as a cooperative effort by patients and researchers. A UK multi-center clinical trial has adopted the charter for their research which will provide a real-world test and a stepping stone to wider adoption. We were amazed to see how our efforts from just a year ago have paid off in the cooperative development of this charter by patients and researchers. (Read the post from last year here)
Tom then discussed this year’s Challenge – How do we improve outcomes and measures in clinical trials? The emphasis again this year was on improving the patient experience and introducing patient centered change to the research process. In addition we will discuss how data gathered from new technology, (wearable sensors, smartphone apps, etc) can provide new measures and improve some of the current measures.
Jon Palfreman, PwP and author of the recently released “Brain Storms – The Race to Unlock the Mysteries of Parkinson’s Disease” pointed out that the Unified Parkinson’s Disease Rating Scale (UPDRS) is primarily subjective and provides only a snapshot of the symptoms you are having when administered, usually 1 or 2 times a year during your Dr. visit. Ideally, with the advent of wearable sensors and other technology, you should be able to provide a picture of your symptoms for the entire period between Dr. visits and get real time feedback yourself.
Dr. Soania Mathur and Dr. Jon Stamford reviewed the results of this year’s survey about the symptoms of PD which have the most important impact quality of life. Interestingly, out of 492 responses to the survey not one respondent listed their top five symptoms in the same order. In fact, if you look at this slide from the final presentation, I count 28 symptoms that were brought up when answering the question “What symptoms most affect your quality of life?” This slide certainly points out that PD is truly different for each of us.
The top symptoms in both categories were put into smaller groupings and we broke out into focus groups to discuss how to improve measurement of our set of symptoms. Every focus group not only developed ideas for measuring symptoms, but also came up with tips and tricks for dealing with the issue, for example walking backwards to relax dystonia of the foot.
The next morning, we had an almost overwhelming number of presentations about new technological devices that will help measure PD symptoms when on or off medication. Presenter’s included Ken Kubota from Michael J Fox Foundation (Fox Insight Wearable Trial), Anupam Pathak Ph.D. from Google (the Lyft spoon), Bruce Hellman (uMotif Smartphone app now available in the UK and coming soon to the US and Canada) and Caroline Tanner (mPower also a smartphone app developed from the SmartPhone PD clinical test I participated in)
We also had presentations from a Davis Phinney Foundation representative about a social networking program they are developing, one from Peter Schmidt of NPF about their Parkinson’s Outcome Project (another one I am participating in) and from Eli Pollard executive director of World Parkinson’s Coalition about PowerThroughParkinson’s, a program they are bringing out with the Brian Grant Foundation that encourages PwP to commit to exercise and eat right.
Day Two also included a presentation from the renowned Parkinson’s Doctor and researcher Bas Bloem from the Netherlands about Parkinson’sNet, a program he helped develop in the Netherlands 10 years ago and which has been implemented in LA area and soon in Grand Rapids. ParkinsonNet has one goal: to guarantee the best possible care for people suffering from Parkinson’s Disease.The program has been extremely successful in providing expert care while also reducing costs.
We then reconvened with the researchers and Tom Isaacs and other members of Parkinson’s Movement made a presentation of the results of our meeting and the need for patient involvement in the development of measures that would be the:
Right Measure – developed with the end user as a partner
Right Person – measure what is important to the person
Right Situation – don’t forgot off periods and how PD changes
In addition to meeting old friends and making new ones, we also enjoyed the exhibition of photos by Norwegian Photographer Andres Leines entitled “This is Parkinson’s”. Andres has early onset PD and has been taking pictures of other EOPD patients to point out that Parkinson’s is not just tremors and doesn’t just effect seniors. You can view some of the photos in this excellent YouTube video.
And finally, the Michael J Fox Foundation just announced that the Fox Clinical Trial Program has exceeded 50,000 registered volunteers! In case you’re not one of us, click on the big shiny button at the top of this page and sign up! Thanks.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
No not sausage links, website links! I thought I would devote this post to what’s going on in the Parkinson’s world. As you know I follow a number of other Parkinson’s blogs and here are a few items of interest from month or so, click on the link to read the entire post (will open in a new tab).
Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s. Inosine is a precursor to the antioxidant of urate. Observational studies had shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression. The trial will start early next year in 60 sites.
Parkinson’s Psychosis Drug One Step Closer to FDA Approval Acadia Pharmaceuticals announced that it has submitted a New Drug Application to the FDA seeking approval for its drug Nuplazid (the compound pimavanserin) for the treatment of psychosis associated with Parkinson’s disease (PD). Current drugs used to treat PD psychosis have safety concerns and serious side effects for PD patients. A Phase III study showed the drug significantly reduced psychosis compared to placebo without worsening motor function. The study also showed the drug was safe and well tolerated.
How to Find the Right Dr Some excellent suggestions from the Parkinson’s Community on linking up with the right Doctor for PD treatment. My recommendation – if possible, link up with a Movement Disorder Specialist.
10 Breakthrough Therapies for Parkinson’s Disease The NPF Medical Director, Dr. Michael Okun, has published a new book covering new therapies for PD. I purchased a copy the day it was released and it is an excellent book, as was his first book, “Parkinson’s Treatment 10 Secrets to a Happier Life with Parkinson’s Disease”. He has an excellent writing style and there are chapters covering new drugs (released and in the pipeline), effects of exercise, coffee, tea and Marijuana, new DBS advances and stem cell therapies among others. I highly recommend both of his books.
How Do I Know If I’m Doing the Right Thing When I Exercise? A post from PD Gladiators, an Atlanta based non profit devoted to combating PD with vigorous exercise. There has been a lot of emphasis on the benefits of exercise and this post discusses what exercise is optimal and how often you should exercise.
Delay the Disease, an Ohio based exercise program, is offering the Handwriting Challenge This program involves doing four simple exercises every day for 12 weeks. The exercises should take about 10 minutes to complete and are designed to test a theory they have that large muscle exercises will improve motor dexterity including micrographia (tiny handwriting). Every three weeks you write out the same sentence with the hope that your handwriting improves. Even if it doesn’t the exercises can’t hurt!
What’s It Like Having PD An excellent post by Bruce Ballard who blogs as Parking Suns. Those of us with PD will agree with these ideas to simulate PD for people who don’t have PD. I found numbers 1 and 2 an accurate description of what it feels like without medication, I’m sure you will find a few that match your symptoms too.
Coming up, Mara and I will be attending the second “Rallying to the Challenge” event organized by the Cure Parkinson’s Trust and the Van Andel Research Institute in Grand Rapids, MI at the end of September. I wrote about the first meeting here and this years meeting will center on how to introduce new technology and additional personalized patient-centric measures into clinical trials. We are looking forward to catching up with members of our Global support group, meeting new members and enjoying the ArtPrize festival in downtown Grand Rapids.
OK, if you have followed every link in this post, you have a bunch of tab’s open and your browser is getting ready to explode so I’ll stop with a quick reminder, sign up for Fox Trial Finder (click on the button above and open one more tab).
“It does not matter how slowly you go as long as you do not stop.” – Confucius
