Follow Up From Our February Session
Strengthening the CP - PWP Relationship
Here are the responses each group generated to the small group questions:
PWP Response to:
What are the 3 most important messages you believe need to be heard by CPs?
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We need to develop a system (like a phrase), that addresses the level of care we need at any given time. We understand that our needs change day-day (or hour-hour), and that in general, we don't want help unless we ask for it.
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We want you to include us in social conversations, ask us every once in a while if we have something to add to a given discussion.
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You need to know that we greatly appreciate the support you give us, We pledge to be more vocal in our appreciation.
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You need to take some time for yourself, go out with friends, go to a spa, etc. We are ok with having some time alone too.
CP Response to: What are the 3 most important messages you believe need to be heard by PWPs?
We need to develop a system (like a phrase), that addresses the level of care we need at any given time. We understand that our needs change day-day (or hour-hour), and that in general, we don't want help unless we ask for it.
We want you to include us in social conversations, ask us every once in a while if we have something to add to a given discussion.
You need to know that we greatly appreciate the support you give us, We pledge to be more vocal in our appreciation.
You need to take some time for yourself, go out with friends, go to a spa, etc. We are ok with having some time alone too.
CP Response to: What are the 3 most important messages you believe need to be heard by PWPs?
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Be willing to let us make some tough decisions that affect the safety of us both, most particularly as it relates to driving.
- Be realistic about your limitations
- Be more cognizant about your personal grooming and/or don't be defensive if I point an issue out to you (I have your best interest at heart)
- We (spouses) still want to be your sweethearts.
- Stand closer to us when you speak, and don't be annoyed if we ask you to repeat yourself.
- We are thrilled that you can still laugh at your challenges.
- We admire that you still look for opportunities to use your skills.
- Let us know what worries you.
- We appreciate when you show appreciation to us.
I think we need a lesson on the number 3, but that's for another day
Here are some important links to resources mentioned yesterday:
- Be willing to let us make some tough decisions that affect the safety of us both, most particularly as it relates to driving.
- Be realistic about your limitations
- Be more cognizant about your personal grooming and/or don't be defensive if I point an issue out to you (I have your best interest at heart)
- We (spouses) still want to be your sweethearts.
- Stand closer to us when you speak, and don't be annoyed if we ask you to repeat yourself.
- We are thrilled that you can still laugh at your challenges.
- We admire that you still look for opportunities to use your skills.
- Let us know what worries you.
- We appreciate when you show appreciation to us. I think we need a lesson on the number 3, but that's for another day
PD School: http://www.pd-school.teachable.com
This is a very comprehensive series of videos addressing just about every aspect of PD there is. There are 24 videos (for streaming) and the cost is $10 per individual video or $150 for the entire set. The instructor is a world-renowned researcher and nutritionist Laurie Mischely.
She has made the first video "Orientation" free to all, and I cannot stress enough how beneficial and informative this video is. You should all make time to watch this video!
This is a very comprehensive series of videos addressing just about every aspect of PD there is. There are 24 videos (for streaming) and the cost is $10 per individual video or $150 for the entire set. The instructor is a world-renowned researcher and nutritionist Laurie Mischely.
She has made the first video "Orientation" free to all, and I cannot stress enough how beneficial and informative this video is. You should all make time to watch this video!
Pro-PD https://educationismedicine.com/pro-pd
Dr. Mischley has over several years accumulated a database of information on the severity of symptoms that 2,000+ PWP report via an online survey. The participants complete the survey over time. and the data produces a line indicating the trajectory of symptom severity over time. She then uses this data to find out those "outliers" from the normal - in other words, those individuals whose disease is NOT progressing at the average pace of progression. She then determines what he group of PWPs who are doing better than average are doing differently, and uses that information to encourage certain behaviors. For example, exercising 3 or fewer times per week does not seem to result in any improvement, but 4 times per week does, and interestingly, 5 times is better than 4, 6 is better than 5 and 7 is better than 6. She does the same thing with the folks who are doing worse than average and discourages their behavior (for example eating dairy products has a strong correlation to the disease progressing faster than the average pace).
The link above lets you take the survey and determine your Pro-PD score.
Daily Dose PD https://www.dailydosepd.com/browse
This is an exercise video site, with a ton of PD-specific workout videos, including Stretching, High Intensity, Boxing, Chair Exercises, Tai Chi, Yoga, Hand Exercises, and even Face Exercises. The cost is $30/mo., but they offer a free 30-day trial, which I think everyone could benefit from.
Caring and Coping https://www.parkinson.org/pd-library/books/caring-and-coping
This is a comprehensive (180 pages) guide for Care Partners. I encourage all care partners to download this book (it is a free download).
Reminder: Next month (Wednesday, March 18th) we have 2 very special Movement Disorder specialists as guest speakers.
Dr. Aaron Ellenbogen from the MIND Institute in Farmington will address Non-Motor symptoms and Dr. Shana Krstevska will address Complementary and Alternative Therapies.
This is a comprehensive (180 pages) guide for Care Partners. I encourage all care partners to download this book (it is a free download).
Reminder: Next month (Wednesday, March 18th) we have 2 very special Movement Disorder specialists as guest speakers.
Dr. Aaron Ellenbogen from the MIND Institute in Farmington will address Non-Motor symptoms and Dr. Shana Krstevska will address Complementary and Alternative Therapies.