Happy New Year!! Hopefully you are keeping warm or staying cool, depending on the downs and ups of temperature. At any rate, winter makes us think of soup and sandwiches, so for our Saturday, January 27th meeting, we’re having a sandwich pot-luck gathering. Donna will bring a soup (butternut squash) that can be sipped or spooned from a cup. We’re asking attendees to bring a sandwich that can be sliced to share on a platter. Donna will supply plates, soup cups, and plastic tableware. Chips, fruit or cookies are also welcome. We will meet in the Bistro on the third floor of Sunrise at Fair Oaks ( right turn off the elevator) on Joseph Siewick Dr. from 10 -noon. People living with PD and their care partners are welcome to attend.
Sonia Gow has an interesting topic to discuss with the group and would like our feedback. She is developing an educational program for professional care givers and wants to hear about our experiences and suggestions. This is an opportunity to express “what we want them to know” about living with Parkinson’s. For those of us who have not yet used outside help, it will be an opportunity to learn what to expect and how to find knowledgeable care givers. This promises to be a lively and helpful discussion for people with Parkinson’s and family members.
Here is a description of the topic and Sonia’s request in her words:
It’s Your Turn to be Heard!
I am creating an educational program for the Parkinson Social Network to present to professional caregivers – the people who care for us in our homes, in long term care, in rehab and nursing homes, day centers, etc. Many of the current presentations for professional caregivers stick to the usual Parkinson’s 101 where they learn about symptoms and treatment, and while I do want to include this basic information, I also want to make it more personal. I want them to really understand how people living with Parkinson’s feel and what they need. I am inspired by something our friend Bob once told me, that people don’t know what it’s like for him.
So while we’re munching on our potluck sandwiches and soup, I would like to hear from you about your experiences with professional caregivers – both good and bad – as well as your suggestions for the kind of care you would like to receive. I would include them in a section called What People With Parkinson’s Want You to Know. Your experiences and suggestions will help me to pinpoint where the professionals could do things differently because I really want them to see you all as the unique individuals you are, and not just as another patient or client. I want to address the needs we hear about and to help make life easier for people with Parkinson’s and those that care for them.
If you’re unable to attend this meeting but have something you’d like me to include, please send me an email at sonia@ParkinsonSocialNetwork.org. Thank you for your help and I look forward to hearing what you have to say on January 27. See you then!
President and founder