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.
Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met. Amazing how life changes isn’t it?
Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder. But then what? You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure! But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug. Oh and that is the same problem with your second choice too!
Oh look, a soap box….
I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants. Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug. Presto, no longer eligible for many trials, at least while in the early progression of PD.
I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs. But, what if the combination produces a better result? Already many of us take two or more drugs to treat all of our symptoms and improve our quality of life. So here’s my idea..
Why not include some already medicated volunteers in the study design? For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex? It might require some tweaking of the dosage of the drugs but you have another 100 participants in your trial. Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.
…..OK, off the soapbox.
We arrived early to help with the setup for the walk and I was glad my stepson, Darrin, joined us for the heavy lifting! This was also our first ‘gig’ as Fox Trial Finder Ambassadors and we set up a table to promote Fox Trial Finder and Fox InSight. We had a lot of activity at our table, handed out a lot of information and MJFF orange brain shaped stress relievers. We met a lot of new people who were interested in both programs and hopefully our efforts result in some new sign ups.
We were asked to speak during the prerace ceremonies so, in addition to our first Trial Finder gig, I made my first presentation about current research and the need for participating in Fox Trial Finder and Fox InSight. I had prepared some notes (about 7 pages when printed in large type!) but found it hard to read the notes, maintain some eye contact, speak loudly AND hold the microphone at the same time so it was more of an ‘off the cuff’ speech it but it seemed to go OK for a first attempt.