This info graphic from the Michael J Fox Foundation provides some interesting statistics about Parkinson’s. Please click here to see this graphic on their site. While you are there, take some time to explore the site and find more information about Parkinson’s Disease and the wonderful research they support.
Welcome to It Is What It Is. I haven’t blogged before so this may a bit rocky and shaky to start (pun intended!). A few weeks ago I was diagnosed with Parkinson’s Disease and am now a PWP (person with Parkinson’s), in addition to being a member of AARP!
Being a retired researcher of sorts, I and my wife, Mara, immediately began researching Parkinson’s on the web. Among all the information we have gathered one thing that stands out is this disease affects everyone differently and requires different treatments that treat only the symptoms, there is not currently a ‘cure’ or even an option to stop the progress of the disease.
I decided I would blog to keep all of my supporters as up to date with information about my status as possible and provide a source for other PWP’s who desire information about the disease and its treatment. I don’t know how often I will post, but I hope at least a couple of times a month. You can subscribe to the blog and be informed of new posts by email at the right or by RSS feed at the bottom of this post.
So how did my Parkinson’s manifest itself? About 6 months ago people starting remarking that I was walking funny, stiffly and with my arms out in front but not swinging. I went with the ‘I’m fatigued’ response but it continued, then I added shuffling to the mix. After about 4 months I started noticing some balance issues and problems with feeling ‘stuck’ to the floor for a second, like my legs weren’t taking orders for a second. So off to see my doctor who agreed I was stiff but wanted me to remove a couple of drugs I was taking to make sure it wasn’t a reaction. After 6 weeks with no improvement it was off to a neurologist who specializes in movement disorders. After tests etc. he determined I had 3 of the 4 cardinal symptoms of Parkinson’s missing only the one everyone associates with the disease, a resting tremor.
I have started drug therapy which requires slowly increasing the dose each week to avoid major side effects. The drug has helped the rigidity and slowness of movement and hopefully the full dose will continue to improve the balance issues which are still there. More about that in the next post.
But enough for today, as the title suggests, it is what it is, and while I might be slow, I’m not out. I plan to face the issues with a smile and a positive attitude. I still take a walk most days, enjoy being on the boat, and watching the sunset on the porch with a gin and tonic or a glass of wine. Life is still good!
There are many organizations, including the ones noted on the under the Resources for PD tab which provide more information and are funding promising research into Parkinson’s. Please take a look for more information.
..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist. A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses. A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit. He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay.
Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.
I am encouraged by the progress of PD research. New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’. Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure.
Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting. Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium. With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.
I am thankful for the support of family, friends and readers during the past eight years. Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD. Thank you!
..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist. A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses. A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit. He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay.
Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.
I am encouraged by the progress of PD research. New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’. Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure.
Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting. Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium. With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.
I am thankful for the support of family, friends and readers during the past eight years. Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD. Thank you!
..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist. A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses. A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit. He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay.
Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.
I am encouraged by the progress of PD research. New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’. Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure.
Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting. Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium. With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.
I am thankful for the support of family, friends and readers during the past eight years. Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD. Thank you!
Wow what an interesting month. Believing our home in Tennessee would be ready to put back on the market by the first of March, we flew to Knoxville to meet with the contractor’s quality control person, approve the work and put the home back on the market. When we arrived at the home, we discovered it was a long way from completion! To say we were disappointed would be an understatement for sure. The quality control person was just as surprised as we were and started calling people to find out why it wasn’t done. This unleashed a series of phone calls and emails with everyone pointing fingers at someone else because it was not their fault. Then to add insult to injury, the water heater gave out and leaked on the new floor, requiring them to pull up part of the floor and dry it out before laying new flooring and replacing the water heater.
After much back and forth the new date was set to the 17th of March but on the 15th I got a call from the project manager to let me know he has fired the crew that was working on the house and hired a new crew that would start on the 19th so the new finish date will be the 23rd, but I’m guessing that won’t happen either. (UPDATE: received call that home is ready for walk through on Monday the 26th!) What a long and winding road!
In the meantime, thinking it was about over, we have been home shopping here in Sarasota and found the perfect home for us at a great below market price. We put in an offer which was accepted and we are set to close March 30th! The home includes some of the furniture which will allow us to set up shop immediately while we wait for the proceeds of the Tennessee sale to purchase the finishing touches. Luckily our son and daughter in law and two grandchildren arrive on Sunday the 1st of April and they will help us make the move. Angelina, the 13 year old grand daughter is ready to organize the move and placement of items while Ariana, the 11 year old, said she would do anything we needed as long as there were snacks.
With all that is happening we have continued our exercise routine of tennis, spin bike, gym, dance and more tennis. Mara is playing tennis almost every day while I play at least three times a week. Our peddling instructor, Kathy, has embraced the high intensity interval training (HIIT) model that has recently been shown to improve symptoms better by pushing our heart rates into the peak zone (85% of max) during each interval. We have been getting quite the workout the past few months with HIIT on Tuesdays and aerobic base and endurance work along with a bit of HIIT on Thursdays.
April is Parkinson’s Awareness month and we will be attending/participating in a couple of events during the month. There will be a day long PD Expo here in Sarasota and our PD in Motion dance class will be performing a routine we have been rehearsing each Monday during class. I continue to have two left (or maybe two right?) feet but it is another enjoyable hour of exercise each week and Lynn, our instructor, just smiles as I bumble my way around trying to remember which right foot to use.
I have been asked to join a Patient Advisory Council for a Pharma company and we will hold our first meeting the day before the Unity Walk in Central Park on April 26th. For more information about the Unity Walk and how you can support us, click here.
We have been busy with exercise, visitors and events since returning from Knoxville after Thanksgiving.
Right after we returned, our friends Pat and Steve from Colorado arrived for a visit which included a trip to Walt Disney World where we met up with our mutual friends Ted, who also has Parkinson’s, and his wife Jan. We spent two nice days at Epcot and the Magic Kingdom with light crowds so we actually got to ride the 7 Dwarfs Mine Train with only a 25 minute wait! (That’s all six of us zipping down the hill) And we got a lot of exercise walking around the parks.
We finished the visit up with our first trip to the Dali museum in St. Petersburg. It contains the largest collection of his works outside of Spain, all donated by a couple who started collecting his work in 1940’s. It was interesting to see his painting style change to surrealism as his career progressed.
This week we also attended Cause 4 Fashion, a lunch and fashion show to benefit the Neuro Challenge Foundation for Parkinson’s. All of the models were either Parkinson’s patients or care persons and our friend Carolina was ‘on the runway’ again this year. It was a well attended event and for a great cause. Neuro Challenge sponsors over 30 monthly education and support programs in four Florida counties including our PD in Motion class and all at no charge.
As always, we try to exercise at least 5 days a week. We attend the PD in Motion dance class every week and play tennis at least 3 times a week. I attend Pedaling for Parkinson’s at the YMCA and Mara does her weight training routine twice a week. Kathy, our pedaling instructor, continues to push our class with new routines which keeps it interesting. I am amazed at the improvement in my aerobic base since we returned in September. I continue to see a reduction in symptoms for up to 24 hours after each class. If you have a class near you I highly recommend adding it to your exercise routine.
As you have probably noticed, I continue to play around with the format of the new site along with trying to find all of the broken links and missing photos. This week I also updated the Resources page to reflect the merger of Parkinson’s Disease Foundation (PDF) and the National Parkinson’s Foundation (NPF) in to Parkinson’s Foundation. I added a new resource website about hallucinations and delusions caused by PD. The site is called more to parkinson’s and is sponsored by Acadia Pharmaceuticals.
In case I don’t produce another post this year, I will take this opportunity to wish everyone a Happy Holidays!! We hope 2018 will be a year of Peace, Joy, Good Health and Good will for us all.