I've had a number of people ask about the conference I attended in mid-September. It was put on by the Northwest Parkinson's Foundation and was held in Spokane, Washington. I will try to recap it for you, as well as give the highlights.
To start, a panel of three professionals spoke on slightly different topics: Dr. Pinky Agarwal, a movement disorders neurologist, Dr. Leo Norfleet, a master's level physical therapist, and another doctor, Dr. Laurie Mischley, who specializes in nutrition in regards to neurology.
Dr. Agarwal, MD, gave a simple PD101 type approch for her presentation, sharing the symptoms of PD (such as tremors, stiffness, slowness, and balance problems, and how the disease might be treated). She covered depression, which tends to complicate the disease, drooling issues and more.
Treatments she addressed were the use of the drug Donepezil, used for memory issues in PD; extra dosing of meds needed due to nighttime sleeping issues or consideration for using Chlorazapam, a sleeping agent. She also addressed the issue of difficulty in swallowing and stated that chewing gum or sucking on candy might help strengthen the muscles used in swallowing. Dr. Agarwal didn't say much about it, but did bring up a clinical trial that is being conducted for the use of a levodopa inhaler. Now wouldn't that be something…
Dr. Mischley was up to bat next and her first statement got my attention: HOPE is medicine. She went on to say that dopamine is produced when a feeling of hope resides within the patient. Enough to cure us? No. But more than if we had no hope, which isn't the case. There is always hope to be found if we choose to look for it. And recoginize it. Things that make you feel good produce dopamine – hugs, giving away encouargement, being encouraged, helping someone, kissing a child's booboo. Find ways to give yourself away and you'll feel better for many reasons.
Laurie is the author of “Natural Therapies for Parkinson's Disease”.
Leo Norfleet, a physical therapist that has worked with PD patients in the Spokane area for over the last twelve years shared ways in which a PD patient can help themselves by improving their posture (ears over shoulders and shoulders over hips), and increase their strength and flexibility (by fully extending legs and arms). His suggestions to pace yourself when you wallk by going fast and then slow every five minutes contributes to endurance, and to practice marching and trying to hit your heel down to the ground when walking.
After our first break, we returned hear Dr. Jennifer VanWey, a clinical psychologist who works mainly with people in their senior years. She stressed the importance of being able to talk about the disease right from the get-go so that in the later stages, the doors of communication have already been cracked open with caregivers, loved ones and friends. Patient and caregiver changes were addressed and how they might affect the relationships between the two, given the caregiver is a family member.
A wonderful lunch was served as the Spokane Tremble Clefs Choir sang. This is a group of individuals who gather to do voice strengthening exercies by singing together. It is made up of PD patients and their spouses/caregivers. This group always looks as if they have a blast together. If you love to sing, you may want to find out if there is a group in your area. I believe the program is nationwide.
After lunch concluded, Dr. Anthony Santiago, MD, a movement disorder specialist was up. Strange, but the after lunch presentations were my favorite last year and this year was no different. Anyhow, Dr. Santiago, as many of you may remember, is my neurologist/Movement Disorder Specialist. He recently ended his position as director of the Muhammad Ali Parkinson's Center in Phoenix, AZ and is now a Professor of Neurology, Section Chief of the Divisions of Movement Disorders and Ataxia, and Medical Director of both the Parkinson's Disease and Movement Disorders Clinic and Movement Disorders Fellowhsip Program at the Unveristy of Minnesota College of Medicine. Whew… that is a mouthful. All to say, he is gifted and – a gift to others.
Even if he wasn't my doctor, his presentation still would have been my favorite. He spoke with such authority and knowledge of his subject, that being PD. He gave an overview of the history of PD, beginning with the first diagnoses to present day research. If I tried to recapture for you all he said, I'd have a brain freeze. What I found refreshing is his hope in PD research and upcoming treatments to help the patient lead a better life.
One of my favorite moments of the conference was when he finished speaking, there was a break and there were several people attending that had been under his care while he served in Spokane. I was fortunate to have a table fairly close to the front and was able to watch him interact with some of his past patients. He was so kind to them, took as much time as they needed, and made them feel (like he always does) like they matter. Now that's a doctor who is interested in seeing you get the best care. I'm glad he's a professor nowbecause I'm hoping his bedside manner is 'caught' by his interns/fellows.
Lynda LeBlanc, an instructor for Dance for Parkinson's in Spokane, led those in attendance in dancing. Because I had gone to get a picture at the back of the room with my favorite doctor, I was standing at the back when this part of the program began. This was my second favorite part of the conference. Watching from behind was a blessing. Seeing all these people moving to beautiful music just about made me cry. It was so awesome and inspiring. And Lynda's leadership and her tone of voice just added to the beauty of it all.
I beleive that Dance for Parkinson's is also a national program. You can contact the Spokane Parkinson's Resource Center for more information and they do have a DVD available for doing the dane movements at home.
Lastly, a cartoonist from Alaska, Peter Dunlap-Shohl, shared some of his favorite cartoons (including the one above) about living with Parkinson's disease. They were great and had the whole place laughing.
If you are able to attend one of the Northwest Parkinson's Foundation HOPE conferences in the future, I cannot recommend it highly enough.
***While browsing for one of Peter's cartoons to share in this post, I came across his blog, On and Off: The Alaska Parkinson's Rag. He gives a detailed summarization of the conference (because he was smarter and brought a recorder). I recommend it if you want more details. Thanks Peter!
I recently came across a website for Parkinson's disease and they were promoting an article of ways to cope when receiving a diagnosis of PD. I wanted to see if this article was going to be any more realistic than others I have read and to my disappointment, no – it wasn't.
They started out by stating that 'anyone who has had PD for a while will you tell you the best of coping techniques are getting involved and staying active with a support or activity group.'
Let's just start with that statement.
First of all, we are supposed to be addressing ways to cope with a diagnosis, not what to do after you have coped with the diagnosis. Does no one else see the difference? I mean, people, you have to be deal with the news before you can act upon it. So, for all of those newly diagnosed with PD, here are my ways to cope with a diagnosis:
Let's be real. We were not (okay, I wasn't anyhow) thinking about what support group we wanted to join or what song in Treble Clefs we were going to sing when we got a diagnosis. No, to be realistic, we stared blankly into our doctors eyes, or we grabbed the hand of the one beside us or we cried. (Or all of the above.)
If you have been recently diagnosed, all of those reactions are normal, sane, healthy, and expected. Yourdoctor should be concerned if you didn't react with at least one of the 'coping' mechanisms above. That would mean:
My guess would be 3. That is also normal at some stage in the game. So is anger. But, denial, if not dealt with, can be very unhealthy and to have PD and be unhealthy isn't healthy.
Is that an oxymoron? Being healthy with PD?
The article went on to state that “everyone in the PD support groups knew first hand at least some of what you're going through and they're more than happy to share their experiences…”
While I understand the point of what they were saying, as people who have been diagnosed with PD for a time now, we need to remember that newly diagnoses often need to be the ones to talk it out and not sit through the history of our experience. Listening will provide for us the tools needed to best help the other person. Do they need encouragement? Compassion? Advice? Just a shoulder to cry on? If we're busy yakking, we won't know.
“Don't face Parkinson's alone. Give us a call.” they said. I think this is amusing. Don't face it alone. Make a phone call. And, why not, “Come see us?” I know, I know. A phone call is less threatening, but it was kind of a funny play on words
Moving on, again…
They gave a recommendation for a coping mechanism: “…read, 'Here are the Tools You Need,' an About-dot-com article. It was a skim 'article' for promoting five other articles (by the same author as the first About-dot-com article on 'the tools') on the web. These mechanisms included: get religion, problem solve, seek support, reconstruct cognitively, and what not to do. Basically it came down to thinking positively and not focusing/getting stuck in the negative, get a support system around you, think of PD symptoms/challenges as a problem to solve in order to find the best coping mechanisms for you.
The advice was basic and could be applied to most any tough situation. The article ended with this gem: “…it is important that you remember that YOU have Parkinson’s – Parkinson’s does not have YOU.”
Now, I know what people are saying when they say, “I have PD – it doesn't have me.” Really, I do. I've even said it. But, to be honest – I loathe that saying because the fact is (to me), IT DOES HAVE ME but, the other fact is, I HAVE IT.
I found out it had me and now I am doing all I can to show it who's boss. Sometimes I can subdue it and sometimes it gets the upper hand and so I fight harder. I think a better way to say it is, PD may have a hold on me, but I've got a stronger hold on it. I don't want to be in denial and for me saying “I don't have PD”, made me feel like I wasn't facing this disease head on. (Picky, picky.)
Anyhow – how did I cope with my diagnosis? I cried. I stared at my doctor for fifteen seconds – not minutes. (I didn't want to give him a complex.) Then I went home and cried some more. Now, sometimes (yes, there are days I am still find myself coping with the diagnosis) I just groan, wishing I could just change it. But alas, I can't and so on those days when I realize there's not a thing I can do about having this little monster who incessantly follows me around wherever I go, I pick apart articles on how to cope. What constructive coping mechanisms to you have?
Keep smiling and stay positive -
We're on this crazy journey together.
I cannot remember where this came from, except to say I saw it recently on Facebook. However, whoever did it, for whatever reason, whenever it was done, it fits! I can certainly relate, can you? The ‘sad’ thing is, I’m afraid it might fit even without me having PD! At least ‘we’ have an excuse!
My mom was telling me about a friend of hers who had told her well-behaved grandson to think of something fun to do the next time he came to spend the night with her. For weeks, she reminded him of his task as the days to his ‘grammy and me’ time drew nearer.
Finally the day arrived. Excited, he entered his grammy’s house and Grandma couldn’t wait to hear what he had come up with.
“Well Jake, what fun thing do you want to do tonight?” she asked him, eagerly awaiting his reply.
“I want to say bad words!”
(Sometimes I know just how you feel, kid!)
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