• 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.”

“The Team”

I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.

“The Team”

I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.

“The Team”

I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.