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The Parkinson’s – Life discussion group welcomed Patrick back “live” since having knee replacement surgery April 19th. He looks like he is progressing nicely, but group members cautioned him to take it slowly and “ice it” whenever he can.

Patrick announced that minutes from this discussion group have been moved to the SmartXPD website rather than being emailed after each session. This will broaden the exposure of the group and make it easier to find available resources. A Master List of Resources has been created and will include any resources discussed in the group.

A video on swallowing techniques will be added to the resource items.

A discussion concerning pneumonia and choking started the “formal” session. One person shared a recent experience where he developed pneumonia. It was very difficult for him to breathe and he would choke at times. Sometimes an infection can cause the person to do things without knowing it. The medical staff determined it was an infection and treated it with the appropriate medication.

Other participants shared that they also had developed infections, especially Urinary Tract Infections, commonly known as UTIs. People with UTIs frequently act irrationally, they may start to hallucinate, become aggressive, and very moody, which makes an appropriate diagnosis difficult. It can be a very scary time for PWP and their families.

Infections, particularly pneumonia and choking are the two most common causes of death in PD.
Hallucinations, illusions, and delusions are very common with Parkies. PCLA has a video that discusses hallucinations, illusions, and delusions. The effect some of these things can have on a person, with or without Parkinson’s, is quite scary.

PCLA’s annual educational conference Life Beyond the Basics had some great speakers, one of which addressed the topic of Hallucinations, Illusions and Delusions. If you review the description section below the YouTube video you can see the speakers and their correlating time stamps.

The doctor is Nick Szumski, MD and he begins his presentation around:  02:15:45 — Hallucinations and Delusions in Parkinson’s, with Nicholas Szumski, MD (Cedars-Sinai)

The event/video is almost 4 hours so obviously skip ahead to this time and give it a view. I think if you click the time stamp in the description (second from last) it takes you right to the portion of the video you’ll want to watch.

A discussion about the brain and its complexity led to comments about quantum physics and oculus 3-D goggles.

Speaking of the brain, two legislators are trying to get May 7th designated as Brain Donation Awareness Day. An email will be sent shortly after this discussion group, for people who want to get involved by May 7th. Additional resources about brain donation are available at:
Harvard Brain Tissue Resource Center (hbtrc.mclean.harvard.edu).
NIH Neuro BioBank (NeuroBioBank.NIH.GOV)
Autism BrainNet (Autismbrainnet.org)

A group member reminded us that May 5th is the Day of Giving. Many of us are involved with organizations and support groups. Now is the time to contribute to your favorite charity.

Patrick relayed to us how he had been working with a national PD group but became dissatisfied with the way it was being operated. After some time, he decided to leave that organization and eventually formed PCLA with a small group of advocates.

Patrick was asked how he was doing and he updated the group on his recovery. He’s doing quite well for being out of surgery for only two weeks.

The final topic of the day was exercise. There are now studies that support the benefits of exercise for PWP.

 

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