Tuesday, June 19, 2012

Making Memories

This is a continuation of the thoughts from "Living in the Moment", the idea being that there are some activities that can be an important part of the present as well as the future.

Linda and I spent last week in Florida at a wonderful family beach vacation spot called Anna Maria Island just west of Bradenton.  The occasion was the celebration of our older son's 40th (yikes!) birthday.  It seemed appropriate to return to Florida for this event since he was born in Gainesville, FL.  We rented two houses with pools to house our group of 24 (both sons, wives, six grandchildren, friends of the "birthday boy" and their families, and a couple assorted grandma's to help with the kids).  A wonderful white sandy beach was only a short walk away.  We were faced daily with some very difficult decisions, like should we go in the pool first or go to the beach where our 10 children (including the friend's kids) were alternately building sand castles or floating on the turquoise water of the gulf in groups.  There was a break for lunch around noon (nobody was wearing a watch), a few naps (including me), then either a return trip to the beach or an afternoon in one (or both) of our pools.  On Wednesday, we took a break for the guys to go deep-sea fishing (one of Kev's friends caught a 135 pound tarpon!) while some of the mom's and kids went on a dolphin-watching tour.

Linda & Carina on dolphin-watching tour

The last afternoon we all walked out to a sand bar at low tide and collected conch shells (most still had conchs in them-one housed a hermit crab) for quite a while before walking (some of us carrying little ones) back to shore.  That evening we gathered at the beach to watch the glorious sunset (Linda and I did this multiple times) and then created a sand memorial to our trip (AMI 2012 was written in seaweed on the beach) and assorted pictures of various groupings were taken.  Of course, we did this to remind us of the good times we had there.  Further in the future, some of the folks in the picture will no longer be around (at least not in the conventional sense).  I am sure our children and grandchildren will look at these pictures and smile.  I think we can all agree on that being a good thing.

Grandkids and friends at Amelia Island 
Sunset at the beach on Amelia Island

I have been particularly mindful of my "window of opportunity" to create special memories for my family for a few years now.  I wrote a memoir for my boys in 2009 to share memories of my childhood, meeting and falling in love with Linda, family vacations and more.  Whenever possible, we get together to celebrate birthdays and holidays.  Linda and I have taken trips to Phoenix, Costa Rica, Moab, Alaska, and now Florida.  We will be spending a week in Canmore (close to Banff) in September and are investigating possible destinations for either November of early next year.  We are determined to "make hay while the sun shines".

My hope for everyone, including PWP's and care partners, is that we will resolve to do the best we can to enjoy and appreciate each day whether we are taking a walk in our neighborhood or on a remote sandy beach.  Remember to set aside some time to plan special activities you enjoy with those you love and create memories that will last a lifetime and beyond.

Thursday, June 7, 2012

PDF Learning Institute Invitation

Linda and I are honored that we have been invited by the Parkinson's Disease Foundation (PDF) to attend the Parkinson’s Advocates in Research Learning Institute – Western Region July 19-21 in CA.  We are excited that we will be able to share what we learn through this blog.  We also plan to continue doing advocacy presentations to PD support groups and other community organizations.   Hopefully, we will also have additional opportunities to spread the word through media interviews.  Here is a brief description of what we will be preparing for:

By participating in the Learning Institute, you will be joining a network of more than 156 PDF Research Advocates throughout the United States who are working to improve the process that leads to new Parkinson’s treatments. Research Advocates are asked to commit to volunteering a minimum of five hours per month on activities that can include working with researchers and study coordinators to address gaps in Parkinson’s research, reaching out to the Parkinson’s community about the importance study participation and participating in Parkinson’s Advocates in Research (PAIR) monthly conference calls. We believe the Learning Institute will provide you with the knowledge and skills necessary in helping to move Parkinson’s research forward.

We are more than happy to make this commitment and look forward to publishing a description of the experience when we return.

Tuesday, June 5, 2012

Shaky Paws Top 10 Recommendations for Care Partners

1.     Live in the moment
·    Learn from the past, plan for tomorrow, but live for today
·    Don’t put off those activities that you have talked about doing “some day”.
·    Make time for fun.
·    Kirk has written an article on this subject on his blog which can be accessed at http://www.blogger.com/blogger.g?blogID=4043496383382565799#editor/target=post;postID=5852441669583448568
       2.  Communicate
·    It is crucial to keep the lines of communication open.  Tell each other what you are thinking and feeling. 
·    Share the things you are worried about and problem solve together.  Express your love for each other frequently. 
·    Catch each other doing little things that provide an opportunity to express appreciation.
3.  Learn
·    Learn as much as you can about PD and related issues. 
·    Stay engaged by participating in support groups and seminars. 
·    Participate in clinical research trials with your partner in order to help yourselves as well as others. 
·    Understand and accept that PD is a moving target and that your partner’s evolving condition/needs as well as your own will require flexibility and adaptation.
4.   Advocate for your partner and yourself
·    Accompany your partner to all medical appointments in order to provide first-hand information about what your partner is experiencing as well as a “second set of ears”.
·    Since it is typical for your partner to have executive function problems, take notes regarding important details
·    Ask questions, voice thoughts/ideas and ask for clarification of anything that is unclear.
5.     Take care of yourself
·    Ask for help.  Solicit assistance as needed from family members and/or friends.
·    Make time for yourself.  Stay engaged with your passions.
·    Attend to your personal wellness.
6.     Faith
·    Our belief that we will be equipped to deal with whatever happens is extremely comforting to us.  Staying committed to that idea over time requires faith. 
·    Faith provides an opportunity to “let go” of fear about the future over which we have no control, and focus on the things we can control.
·    Read the same article listed under #1 if you haven’t already.
7.     Patience
·    PD mood swings and/or cognitive problems can be very hard on relationships.  No matter how good your communication, it is likely that your partner will sometimes act or react in ways that are “not tactful”.  Try very hard not to take these things personally. 
·    At a later time, communicate about what happened. 
·    Don’t let an individual episode create a rift between you. 
·    Talk with your Movement Disorder Specialist (MDS) about any ongoing concerns.
8.     Balance
·    Your “PD life” takes place in the context of your “overall” life.  It will be beneficial to both of you to keep the two integrated and balanced as much as possible.
·    As the disease evolves, your partner’s physical and mental abilities will change and may be influenced by depression, anxiety or apathy.
·    Based on your knowledge of your partner, you can experiment with different strategies to encourage exercise, keep them engaged mentally and socially, discourage driving and more.  Keep your MDS in the loop and ask for suggestions.
·    Care partner/PWP breakout sessions in support group meetings are a good opportunity to share concerns and get suggestions.
9.     Be prepared to make tough choices
·    Despite your best efforts, there may be a time when you are no longer able to cope with your partner at home by yourself.
·    Explore options (preferably with your partner) such as assisted living, residential facilities, or in-home care/services so that you can make an informed decision if and when the time comes.
·    Do not “suffer in silence” or feel compelled to “go down with the ship”.  Talk to your MDS, support group friends, and family members as necessary.
10.                   Perspective
·    Continue to find the joy in your lives and the love in your relationship.
·    Celebrate the small victories.
·    Be happy whenever possible.
·    Do NOT let PD own you!

“Mrs. Shaky Paws” is Linda Hall, retired social worker and wife/care partner of Kirk Hall (they will celebrate their 43rd wedding anniversary this year), author of Carson And His Shaky Paws Grampa and patient perspective Parkinson’s advocate/speaker.  Initially reluctant to accept her husband’s diagnosis, Linda has become very knowledgeable regarding PD and is a very effective advocate for him.  She is an active participant with Kirk in Denver area support groups and the Parkinson Association of the Rockies.  Linda is engaged in an ongoing “balancing act” involving six grandchildren, her love of exercise and competitive tennis, involvement in the local PD community, and Kirk’s evolving needs and activities.  Articles related to the book, Kirk & Linda’s journey, and the challenges/blessings of life with PD can be found at shakypawsgrampa.blogspot.com.  For information on his book, which was written to facilitate communication between adults and children regarding serious illness, visit http://www.innovopublishing.com/Featured-Book-Shaky-Paws-Grampa.html.