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| At McClellan Air Force Base this Year! |
After 22 years with this unpredictable disease, you wouldn't think we would have that much more to learn. But research and new treatments are continually in the works, so there is still much to ascertain. While there is yet no cure for PD, they are making strides to help living with the disease easier. Professionals from Neurology, Physical Therapy, Nutrition, Movement and Kinesiology all shared the latest results of their research and experience. It was a bit overwhelming, but I was able to write down questions for Jamey's neurologist to answer at the next appointment we have.
One of the things that pricked our ears, was the news that it is no longer necessary for a patient having DBS (Deep brain stimulation) surgery to be awake. Poor Jamey was awake for over 12 hours while they worked inside his brain! Now, they can put the patient to sleep and he wakes up with implants in his brain. Ta-Da! That is a big deal! One of Jamey's electrodes from his DBS implant from 12 years ago is no longer working. So with that information, he might opt to have the surgery again (if indeed it would be beneficial). That's one of the questions we will ask his doctor.
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| Waiting for it to start |
The nutrition information wasn't anything shocking. Of course most of us know what we should and should not eat, whether or not we do it. But the researcher/nutritionist also relayed her findings about dairy products causing progression in Parkinson's patients. That was a bit surprising! Of course, soda (all kinds), red meat, and fried foods were called out as well as dairy. But, the one thing this nutritionist did say, was that even more important than diet and exercise, was remaining social and keeping and making new friendships. Those two things rated highest in all PD patients as the most important to their continuing health in her tests. I think that's all Jamey heard from the talk. 'Which one of these things I hate is less unpleasant; eating veggies or being social?' Being social won out as the lesser of two evils! 😊
There are several new treatments in the works for the future. Glutathione nasal inhaler (to improve symptoms more quickly), better and more streamlined electrodes for DBS, battery improvement for DBS, Canabas (non-hallucinogenic) for sleep. Some of these things are actually available now, but insurance won't cover the cost. That makes the treatments somewhat prohibitive for some people. Hopefully, in the near future, insurance companies will recognize the treatments that work and these will become doable for all PD sufferers. We are assured by next year's meeting, there will be some great new options for us folks!
In the meantime, we continue to keep on going. God is good through all of this and even when we don't understand we keep trudging through the desert. One of these days we're sure to hit an oasis! 😃
Below are some informative websites for PD patients and their caregivers. Make moving more often a priority. Whatever we can do to keep this nasty disease from progressing, the more beneficial for everyone!
www.clinicaltrials.org
https://www.lsvtglobal.com/LSVTBig
https://www.rocksteadyboxing.org
www.panctoday.org
https://www.caregiver.org/caregiving-home-guide-community-resources
*Nonprofit organization founded in 2010 by Dr. Becky Farley PhD, MS, PT, which Implements cutting edge research on exercise and brain change to real world healthcare paradigms. Dr. Farley is also the developer of evidenced based therapy approach of LSVT BIG.
