The other day I was able to view a webinar with Dr. Michael Okun, put on by the National Parkinson's Foundation and sponsored by Medtronic. Dr. Okun is the author of a recent publication (2013), 10 Secrets to A Happier Life, and is on staff at the University of Florida as the Administrative Director, Co-Director, Center for Movement Disorders and Neurorestoration Professor, Departments of Neurology, Neurosurgery, Neuroscience, Psychiatry and History. (Try to say that five times as fast as you can.)
I will try to recapture the highlights for those who missed it. After all, who doesn't want to know the secrets to a happier life? And, pray tell, why has Michael Okun been keeping them a secret? Inquiring minds are desperate to know. So, since he didn't say to keep them a secret, I'm telling everyone.
First of all, Dr. Okun made teh comment alluding to the Parkinson's patient being like the sun. He didn't say we send out warm fuzzies to all who enter our atmosphere, but he did say that basically, the patient is important and that everything should revolve around us. We are so special! Thank you, Dr. Okun. Now, when your caregiiver won't do as you ask, tell them Dr. Okun (and add his titles above so you really sound authoritative) said they are to make you the center of the universe and revolve around you. After all, in the solar system realm, you are top dog.
Dr. Okun spoke of hope and dreams in his talk, stating the importance of both by citing a quote by Lu Xun which, in part says, “…when many men pass one way, a road is made.” This gives hope in the realm of research, I think. He then went on to quote Jillian Lauren, author of Pretty, who said, “I look for a sign. Where to go next. You never know when you'll get one. Even the most faithless among us are waiting to be proven wrong.”
Isn't that true in this or any other disease? We keep looking, watching, hoping for a cure, a sign that the time is just around the corner because you never know who will find it. Or when. Or how. Or where. Even the faithless are waiting… and wanting.
The good doctor went on to say that PD isn't a single disease, like cancer, diabetes, Alzheimer's. It is a combination of many and varied symptoms that mimic so many other diseases. Depression, anxieties, sexual dysfunctions, bowel issues, dystonia, restless leg syndrom, tremors even. You can have one of those 'diseases mentioned and not have Parkinson's but to have Parkinson's means the likelihood of experiencing any or all of the other afrementioned diseases is very good. Many equivocate PD to Alzheimer's but they are not the same. “There is a different degenerative process,” Dr. Okun said.
So, at this point I'm wonderng to myself, Where is the happy part? This is sort of depressing. But, the good doctor came through.
“So you have PD. It's not like having some other diseases. Having PD is btter.”
Okay, I like that.
“Joshua Harris,” he quoted (which I found amusing, since he writes books on dating and such), “said, 'The right thing at the wrong time is the wrong thing.” Dr. Okun used this quote as a backdrop for the importance of takings your meds on time, every time and timing is critical. Dosages need to be precise also, he explained.
Dr. Okun talked about hospital stays and how they can be a dangerous place for PD patients. Medical staff are, more often than not, not educated about Parkinson's disease and don't realize how critical having our meds on time can be. He said that 3 out of 4 times, PD patients do not receive their meds on time. For some patients missing just one dose can put them in a tailspin, resulting in the staff trying to accomodate new symptoms they view as being out of control and so then give you something to calm you and the next thing you know, you might be standing at the pearly gates.
Okay, I'm exaggerating. Sort of. This scenario is not common, but it has happened. Chances are, those caring for you in the hospital aren't going to know of your aversion to Haldol, so it's up to you to educate them. When they ask if you're allergic to anything, now you know what to tell them… Haldol. “Be prepared to get the right treatment,” Dr. Okun said. In light of this, he mentioned the Be Aware in Care Kit, offered free just for asking, from the NPF for Parkinson's patients and/or their caregivers.
“Lack of activity destroys the good condition of every human being, while movement and methodical physical exercise save it and preserve it.” – Plato 380BC
This quote led to talking of exercise and its importance to patients. He said that “Excercise is like a drug. When movemente is involved, we get better. Movement is also like Miracle-Gro to the brain.” Now, I love to garden and know the benefits of this stuff. Better root system, healthier plants, plentiful and abundant fruit… now – who doesn't want those benefits? (Disclaimer: author nor Dr. Okun is responsible for the ingestion of Miracle-Gro by a patient.)
He also stated that there are no 'best' exercises for the patient but ones that get your heart rate up each day and cause you sweat are a good thing.
He spoke about DBS in that, it is electricity to the brain, causing tremors, stiffness, slowness to sometimes be alleviated and in some, eliminated (so I've heard). The purpose? To alleviate suffering. To enhance the 'off' times by offering stimulation. These reasons for DBS is what Okun uses when countering the debate as to whether DBS is ethical.
Yes. I guess that has come up. By people who don't have PD, would be my guess.
He went on to say that making the brain electric can be helpful. It isn't for all, but for some. He stated that one in five patients may benefit from this procedure. And, did you know that PD led the way with using DBS, helping other diseases to benefit from this act of drilling into your brain? I just want to thank the very first patients who said 'yes' to having this done.
It was suggested by the good doctor to ask questions at your doctor appointments like, “What is the latest research in PD? What is the evidence in (whatever the latest research is) being beneficial to me? Are there any new drugs for PD and are they something we should consider?”
He talked about pain in PD and how changing the dosage of your current intake of levodopa may be helpful. (Any feedback on this by someone who has been here, done this would be super appreciated!)
Dr. Okun had more to say and took some questions in a Q&A session immediately following, but my meds were wearing off and I can't read my notes. So, the big question? What, exactly, were the ten secrets, ?
I guess I'd have to say…
- You are the sun?
- Be hopeful?
- Take your meds on time?
- Be your own advocate, especially when it comes to hospital stays?
- See about becoming bionic?
- Ask questions?
- Check out how to reduce pain?
- I don't know
- I don't know
- I don't know
My suggestion? Get his book. I couldn't take notes fast enough and what I did catch I can barely read. Such is life with PD.