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!!
Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday). And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day? I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month. Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year? OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week? I don’t think setting aside a month, week or day is the answer!
OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest. We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few. We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around. So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or…… Let’s not let up because Parkinson’s Awareness Month is over.
Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016. The National total so far is over $1.2 million. I want again to thank all of my supporters this year, together we will find a cure!
Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups. PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation. In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year. I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.
So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym. We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.
We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there. So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy. We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it. Watch this space for more information about how it all works out.
Couple of last minute items: 1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th. Click here for more information and to sign up. A great opportunity if you haven’t been able to attend a local event.
This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23. Early registration ends July 5th. Mara and I are attending and serving as volunteers. Check out the event schedule and register here.
Finally, I saw this great info graphic on Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association. I think it hits the exercise nail right on the head!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday). And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day? I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month. Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year? OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week? I don’t think setting aside a month, week or day is the answer!
OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest. We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few. We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around. So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or…… Let’s not let up because Parkinson’s Awareness Month is over.
Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016. The National total so far is over $1.2 million. I want again to thank all of my supporters this year, together we will find a cure!
Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups. PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation. In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year. I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.
So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym. We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.
We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there. So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy. We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it. Watch this space for more information about how it all works out.
Couple of last minute items: 1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th. Click here for more information and to sign up. A great opportunity if you haven’t been able to attend a local event.
This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23. Early registration ends July 5th. Mara and I are attending and serving as volunteers. Check out the event schedule and register here.
Finally, I saw this great info graphic on Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association. I think it hits the exercise nail right on the head!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday). And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day? I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month. Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year? OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week? I don’t think setting aside a month, week or day is the answer!
OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest. We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few. We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around. So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or…… Let’s not let up because Parkinson’s Awareness Month is over.
Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016. The National total so far is over $1.2 million. I want again to thank all of my supporters this year, together we will find a cure!
Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups. PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation. In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year. I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.
So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym. We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.
We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there. So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy. We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it. Watch this space for more information about how it all works out.
Couple of last minute items: 1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th. Click here for more information and to sign up. A great opportunity if you haven’t been able to attend a local event.
This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23. Early registration ends July 5th. Mara and I are attending and serving as volunteers. Check out the event schedule and register here.
Finally, I saw this great info graphic on Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association. I think it hits the exercise nail right on the head!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
