• Parkinson’s Awareness Month

    As I noted in the previous post, April is Parkinson’s and Autism Awareness Month and I warned you that I will try to post more frequently this month.  Who knows, that might get me to post more frequently every month.

    For those who are wondering about my interest in Autism, I have a grandson, Charlie, who was diagnosed as being on the Autism Spectrum when he was 3.  He is 14 now and will be going to high school next year. The work done by Autism Speaks and other organizations to increase Autism awareness and research were instrumental in his early diagnoses and subsequent treatment. The information that these organizations provide to caregivers and patients is invaluable. We have found the same to be true of the Parkinson’s organizations.

    For those of you that supported the Parkinson’s Action Network (PAN) campaign to remove the Medicare therapy caps, I and PAN thank you for your support.  Unfortunately Congress ‘kicked the can’ down the road and passed an extension of the current law for another year, but we will keep trying!

    For those of you wondering what went on this week, it wasn’t all fun!  I was originally scheduled for a colonoscopy the Monday after the Superbowl. I decided to reschedule it so the preparation and fasting would not interfere with me watching the Broncos win (well it was a good idea at the time). The rescheduled event was for this Monday so I went through the fasting and other prep on Sunday but when Monday morning rolled around, things were not as clean as they should be so….I did it the fasting and prep again on Monday so they could redo things Tuesday morning.  This time it worked and no problems were found which was good news.  Also because having Parkinson’s makes you more likely to have melanoma, I had the first of my now annual visits with the Dermatologist, again all was well.

    On the positive side, we had several nice days resulting in evenings on the screen porch enjoying the lake, the sunset and music.  Now that things are warming up, I’m ready for the lake level to rise so I can do some fishing and boating.

    Tomorrow is the local Parkinson’s Unity Walk and we are hoping for nice weather.  We appreciate the support we have received, thank you.  I’ll let you know how it all goes in the next post.

  • Support

    When I was first diagnosed,  I had mixed feelings about attending a support group.  I wondered if we sat in a circle and I said “Hi, I’m Tom and I have Parkinson’s”  (Hiiii Tom).  Was there a 12 step program for dealing with Parkinson’s? 😉  And I was worried that seeing PWP’s with a wide range of  symptoms would be like seeing my future.  But as I learned more about Parkinson’s I realized that it is a progressive disease that affects everyone of us in different ways and no two seem to be alike.  And, as we learned at the Kripalu retreat and in Florida,  it is helpful to meet other PWP’s and caregivers to trade experiences, share coping strategies, and for a sense of community

    So, last week we attended two local support groups, The East Tennessee Parkinson’s Support Group and the local Kingston Support Group.   Both groups meet at a local church, both meetings included lunch and both provided us with a positive experience.

    The East Tennessee Parkinson’s Support Group, PK Hope is Alive, met on Tuesday in Oak Ridge.  There were probably 60 – 70 people in attendance pretty much evenly divided between PWP’s and caregivers.  We opened with some voice exercises led by one of the PWP which included some singing. I didn’t have a signing voice before Parkinson’s and it sure hasn’t improved, but it was fun.  After lunch they introduced Dr.Scott Wylie Ph.D from Vanderbilt University Movement Disorders Clinic, a National Parkinson’s Foundation Center of Excellence. He gave a fascinating presentation on “Cognitive Changes in the Parkinson’s Patient”.  He and his research group are doing research about the effect too little or too much dopamine can have on cognitive functions.

    Dr Wylie pointed out that James Parkinson, in his 1817 ‘Essay on the Shaking Palsy” described the disease as ” Involuntary tremulous motion, with lessened  muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forward, and to pass from a walking to a running pace: the senses and intellects being uninjured.” (Underline added) He expects that last bit would be revised if James Parkinson were alive today.

    While most of us were aware that lack of dopamine is at the root of our motor symptoms, his research has shown that it may also have an impact on our cognitive symptoms too. I hope to get a copy of his presentation and will provide more information in a later post. After the presentation, he answered questions from the group which meant we didn’t get an opportunity to break out into smaller groups of PWP’s and caregivers for discussion but the meeting was fun and we plan to attend again.

    The local Kingston Support Group met on Wednesday.  We first heard about this group during a Tai Chi lesson when someone mentioned that they were aware a group met in the same space but didn’t know the day or time.  So I had planned to call the church when we returned from Florida to get the information but, as luck would have it, the Monday edition of our local paper made mention of the meeting’s day and time.  We found out later that they had been trying to get it published for quite awhile and Monday was the first time it was finally inserted in the community calendar page.

    This group was quite a bit smaller than the Oak Ridge group.  There were about sixteen attendee’s including another couple who were there for the first time after seeing the mention in the paper.  We sat around three tables and had a great opportunity to discuss symptoms, medications, exercises and care giving tips while enjoying lunch.  After lunch we had a short presentation by the founder of the group who is a speech pathologist and had just returned from a conference.  She gave us some tips on how to stand erect and a simple stretching routine that will strengthen the neck muscles and help prevent problems with swallowing.  Again an interesting and informative meeting and we will attend again.

    So I didn’t have to announce my problems to the group(s) and I didn’t see my future, but I did get a lot of good information and a chance to meet other PWP’s and caregivers and exchange information.

    We have been working at keeping up the exercise routine since we have been home and are doing pretty well, averaging about an hour a day.  We continue to walk or ride the bike and try to include either Tai Chi or Yoga routines everyday.  We purchased another Tai Chi DVD that is more advanced and not quite as easy to follow but we are getting there. Yoga continues to be difficult with my stiff muscles but I know continuing it will help me to gain flexibility and it will get easier (I hope).

    April is Parkinson’s Awareness Month and I hope to post informational items as the month progresses.  We will be walking in the East TN Parkinson’s Walk on April 5th.  This walk is the local version of the Parkinson’s Unity Walk held in NYC April 26th.  One hundred percent of the funds raised are donated to Parkinson’s research foundations.  You can find out more about the walk by clicking here or if you wish to support our team, you can click here.

    April is also Autism Awareness Month, another cause that is important to me, so next month’s posts should be chock full of information!

  • Beach Time is the Best Time!

    We are on our third week of hanging at the beach in Siesta Key, FL  We were scheduled to leave on March 1 but decided to add one more week.  We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.

    While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.

    We have also joined up several times with Joel Gordon and his wife Rabbi Melissa Wenig whom we first met at the Kripalau Wellness Retreat last October. They came down from Cambridge, MA in January and are staying until May. It has been a great opportunity to discuss how Parkinson’s has impacted our lives with another PwP.  One of our outings was to the Venice Rookery, a small island on a small lake in Venice where hundreds of Egrets, Herons and other birds roost at night.  We went at sunset and watched the flocks fly in from where ever and take up residence in the bushes on the island.  This picture gives you an idea but doesn’t do justice to the whole experience.

     

    After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!

    The warm weather has been  great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice.  We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch!  I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.

    We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim.  The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂

    In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach.  We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!

    We head home Saturday and hope that spring arrives at the same time 🙂

    Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”

IT IS WHAT IT IS!

Parkinson’s Awareness Month Is….Almost Over

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

Other Posts

IT IS WHAT IT IS!

Parkinson’s Awareness Month Is….Almost Over

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

Other Posts

Tag: Partner’s in Parkinson’s

  • Parkinson’s Awareness Month Is….Almost Over

    Parkinson’s Awareness Month Is….Almost Over

    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

Powered by
►
Necessary cookies enable essential site features like secure log-ins and consent preference adjustments. They do not store personal data.
None
►
Functional cookies support features like content sharing on social media, collecting feedback, and enabling third-party tools.
None
►
Analytical cookies track visitor interactions, providing insights on metrics like visitor count, bounce rate, and traffic sources.
None
►
Advertisement cookies deliver personalized ads based on your previous visits and analyze the effectiveness of ad campaigns.
None
Powered by

Medical Disclaimer - Privacy Policy - Terms and Conditions