SF Bay Area Events with Janet Edmunson (8/7, 8/12, 8/13)

[Guest guest]

For all San Francisco Bay Area folks:

Janet Edmunson, the author of " Finding Meaning with :

Caregiving with Love Through a Degenerative Disease, " is in the SF

Bay Area for about a week in August. Several people in our local

support group have read the book, and highly recommend it. (I do

too.) She writes that " difficult experiences teach us precious

lessons of wisdom. " Two of my favorite lessons are: " Stress makes

you stupid " and " Be more upfront. " You can read an excerpt of her

book below.*

While in the Bay Area, Janet will be the guest speaker at two special

events (one in Sunnyvale and one in Palo Alto) and several PD support

group meetings (Oakland, San , Palo Alto). Both care givers and

care recipients will find her remarks of interest. You are all

invited to attend any of her presentations however I would really

appreciate it if you could attend one of the two special events (as I

helped set these up, and the rooms are large!):

Tues 8/12, 1:30 - 3pm, The Parkinson's Institute, Sunnyvale

Wed 8/13, 6:30 - 8pm, Avenidas, Palo Alto

Also, Janet has offered to meet with some of us (care givers and care

recipients) over lunch (11:45am) and dinner (4:45pm) on Wed 8/13 in

Palo Alto. Let me know if you are interested in that.

Here are the details -- including how to RSVP -- for all the

gatherings you are invited to attend: (everything is free except the

lunch and dinner)

Thursday 8/7

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1:30-3:30pm, Oakland PD Support Group, Bay Area Easter Seals office,

180 Grand Ave., Suite 300. This meeting is open to everyone. Please

RSVP as space is limited. RSVP to Eagan,

keagan@..., 510/763-4492.

Tuesday 8/12

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1:30-3pm, Special community event at The Parkinson's Institute, 675

Almanor Avenue, Sunnyvale. This event is open to everyone. Please

RSVP as space is limited and the organizers would like to have

refreshments for all. RSVP to Gloria, The Parkinson's Institute,

main phone 408/734-2800, or via email to ,

mchavez@....

Wednesday 8/13

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2-3:30pm, Palo Alto PD Support Group meeting, Avenidas, dining room,

450 St., Palo Alto. This meeting is open to everyone. No

need to RSVP. For additional information, call the Avenidas

organizers of this regular meeting at 650/529-2394 or for general

information call the Avenidas front desk at 650/289-5400. A parking

garage is across the street, and offers free three-hour parking.

6:30-8pm, Special community event, Avenidas, dining room, 450

Street, Palo Alto. (Avenidas main phone 650/289-5400.) This event

is open to everyone. Please RSVP as space is limited and the

organizers would like to have refreshments for all. RSVP to Robin

Riddle, via email rriddle@.... A free parking garage

is across the street. This event is sponsored by APDA and Avenidas.

I hope to see you at one or more of these events!

Robin

* Janet Edmunson writes that " Difficult experiences teach us precious

lessons of wisdom. " Here is an excerpt from her book:

During the later stages in dealing with 's disease, I had

learned quite a few lessons:

Don't wait too long to get help. Trying to do it all seemed like the

only way at first, but that eventually wore me down. I hadn't thought

that would accept help from home health aides-especially

female ones. In retrospect, I found that once he had the help, he

quickly got used to it, after a bit of complaining. I ended up

missing out on needed help earlier in his disease.

Stress makes you stupid. I couldn't concentrate, couldn't find the

right word I wanted, or I would just forget things. I understand that

there is actually a physiological explanation for this phenomenon:

Stress can impact our ability to think clearly. I was glad to realize

that I wasn't really losing my mind.

Surround yourself with positive people and messages. I felt uplifted

when I listened to the Norman Peale tape we had ordered for

through the National Library of Congress. Peale's affirming

theme of " you can if you think you can " gave me courage and assurance

that my positive attitude was what would get me and through.

Two other quotes from Peale also encouraged me: " It's always too soon

to quit " and " To every disadvantage there is an advantage. " I wrote

each of those down and kept the notes handy. They fit in well with a

saying I had always tried to follow: " When life gives you lemons,

make lemonade. " With positive people and messages around me, I had

the confidence to make it through this unimaginable life difficulty.

Strength comes in helping someone else. The more I committed to help

fulfill his goals, the stronger I felt in my caregiving. I

guess that was because I had become a partner with him in preserving

his legacy, which provided meaning and purpose for this struggle.

It's difficult dealing with the very long good-bye that is part of a

neurodegenerative disease. While I didn't hear her say this, I

understand that Reagan used these words to describe living with

Reagan's Alzheimer's disease. While I chose to be optimistic

and tried to make the best out of our situation, I had nonetheless

been losing my beloved bit by bit. And that was still very

difficult and painful.

Assisted suicide is probably not necessary. Earlier in 's

disease, I had pondered whether assisted suicide might actually be a

humane way for to end his life, if living it was too

difficult for him. If he was no longer contributing to life -- and

was just existing -- why shouldn't we be allowed to do it? But I had

learned that for , even though he couldn't talk, he was still

making an impact in other's lives. Even the hospice staff and

volunteers, who never heard him speak, commented on the powerful

influence he quietly had on their lives. And because he didn't show

that he was in too much pain, allowing nature to take its course

seemed to be the right thing for us.

Be more upfront. I wish I could have dealt earlier with certain

issues that arose with , such as his driving, retirement, and

getting a wheelchair. I felt that he needed to be emotionally ready

to address some of these things. However, in some instances, I might

have waited longer than I really should have. I could get the

gumption to deal with potentially contentious issues only if I

psyched myself up first. But even then, these issues took me out of

my comfort zone. I watched for the appropriate opportunity and

pounced on it when it came, but I wish I could have been more proactive.

Life isn't fair. That was just the way it was. By accepting that life

isn't fair, I was usually able to stay clear of the anger and

frustration that can paralyze caregivers. My brother explained to me

once that the Chinese symbol for crisis is danger plus opportunity.

The danger just happened -- had a degenerative disease. Even

though it was unfair, this tragic opportunity allowed me to live more

deeply and passionately.

Who is Janet Edmunson?

Janet Edmunson is the author of Finding Meaning with :

Caregiving with Love Through a Degenerative Disease. Her book offers

an inspirational approach for family and professional

caregivers--using tools like the " Symptom Tracking Form " , and

affirmations written for caregivers. Janet provides practical help

for dealing with doctors, and emotional support for family members.

She has a master's degree and is a 30-year wellness professional,

national speaker and publisher. Her website is

http://www.findingmeaningwithcharles.com.