Arriving at Thriving...or How We Deal with Depression

This is the article on depression that I wrote for the National Parkinson Foundation.

Starry Starry Night, (Vincent) Secrets of Old Age

What a blessing to know that this mortal, earthbound experience of our eternal life is only one of the adventures in our journey and that we will take the lessons learned and the relationships of love and friendship with us into the next leg of our journey. This is a meditation that is refreshing when the body and spirit are tired or discouraged and in need of a rest stop along the way.

Jessica's Story: Moving Day, Orlando

Jessica's Story: Moving Day, Orlando

Just Swaying to the Music...and holding each other up!!

             HAPPY ANNIVERSARY            

 Don & Carol  

52 years and still dancing!

      

                    

June 24th 2013 we will celebrate 52 years of marriage. The picture above is of us dancing at our granddaughter Alishia's wedding on June 1st 2013.

We have been blessed with 8 wonderful children; 16 grandchildren and 2 great grandchildren.

I'm not sure that you would call what we are doing, dancing, but we are swaying to the music and holding each other up.

I think that is how we have spent the last 52 years, and that is about all that any of us can do.

Our blessings are too numerous to count; we still pray that we can be of service to others.

Parkinson's has certainly slowed us down and we may not look pretty anymore, but we love being together and plan to enjoy an eternity together...swaying to the music and holding each other up!!

DANCE for PD: SO MUCH FUN !! and a note about the National Parkinson's Foundation

 

 

THE WONDERFUL MARK MORRIS DANCE GROUP

&

THE BROOKLYN PARKINSON GROUP

This is our new FAVORITE THING!! Don and I have enrolled in the Dance for PD dance class at the Des Moines, WA Senior Acttivity Center. The classes are wonderful...IT'S FREE...New Friends...a REASON to GET OUT of the HOUSE...we enjoy the one hour drive to Des Moines and the chance to eat lunch at a restaurant...and best of all WE ARE MOVING and TOGETHER. If you know someone with a PD diagnosis please check the website at "Dance for PD" and watch clips of classes on YouTube "Why Dance for PD".

 

While we were in Florida for our granddaughter's wedding, we had a chance to visit with our son who has just been diagnosed with Parkinson's; he asked if we had visited the National Parkinson's Foundation website and I had to admit that I had not. I picked up my iPad and immediately searched and found so much wonderful information (don't know why I hadn't gone there before...duh!). Our son told us that he had recieved the ID braclet (Free) from contacting them and also a wonderful information kit (also Free)...we ordered two...one for me and one for Don. I was also able to link to the wesite for this fabulous Dance Program and found one in our area (1 hour away) at home in Washington...I can't tell you how much this has helped us already!! We knew we had had a workout after the first class, but felt stronger and able to move better right away. I ordered the DVD they offered for at home use even before we left Florida so it would be there when we arrived home. The other day Don's caregiver arrived at 9:00 a.m. and we were both still in bed and feeling like we wanted to stay there all day, but of course I had to get up and take care of the dog while Justina helped Don. It wasn't long before I was ready to lay down on the couch; I just wasn't moving well or feeling motivated to do anything and then I remembered that I hadn't told Justina about the dance class. I thought that she might like to see the DVD and use the program with some of her other clients, so I put it in the DVD player. It wasn't long before we had the dining room chairs out and we were doing the dances together. Two dances later and I had my ENERGY back and felt motivated to keep on moving through the day. THIS IS THE BEST THING WE HAVE DONE FOR OURSELVES and when the GRANDKIDS came yesterday they each got a chair and JOINED IN...GOOD EXERCISE for all of us and so much FUN...when their mom came to take them home they wanted to show her their favorite dances...QUALITY TIME spent together (even if it was "screen time" on the big TV). So here is the information...hope you will feel like joining us. There are many of these dance classes across the country; check out the website to see if there is one near you.

 

Out-Foxing Parkinson's: the PaGeR STUDY....we've been invited!

YOU MIGHT BE INVITED TOO.....


We got our invitation today...NOT one we would have been interested in a year and a half ago, but as we all know .....THINGS change.  I got a call from Erica Martinez at the University of Washington.  She said that they would "love" to have our family take part in the study.  I told her that I would contact all eight of our kids and give them her contact information (she already has Pamela's). Enrollment and testing takes between 1 or 2 hours, and can be done at many of the VA Medical Centers and other locations across the country...for those of us living in the Seattle area, the Puget Sound VA Med. Center on Beacon Hill is the location.  If you have 2 or more members of your family who have been diagnosed with Parkinson's Disease you can contact Erica Martinez by leaving your contact information at the PaGeR Study website www.thepagerstudy.org or by telephone at 206-277-4592 (in the Seattle area) or 1-855-646-4221 (toll-free)  and she will contact you ; you might be invited to join us....it's what we can contribute to the research efforts to find a cure for Parkinson's...I figure it's the least I can do with a pretty bad set of circumstances....

"Berry" Interesting...

According to an article published in WebMD (www.webmd.com) April 5, 2012, blueberries and strawberries may protect against Parkinson's Disease. In a study done with 130,000 participants, who were followed for 20 years, of whom 800 developed PD, those who consumed 2 or more servings of berries a week were nearly 25% less likely to develop PD than those who ate less than one serving per month.  Men appear to have benefited the most.  Men who had the most flavonoids in their diet were 40% less likely to develop Parkinson's disease than those who ate the least. Flavonoids are found in abundance in fruits and vegetables, especially berries and apples...also, tea and red wine.

MY COMMENT:
They may not be able to say definatively that berries protect one from developing PD, but this is a GREAT excuse to have berries on your cereal or ice cream ALL YEAR round....
...I'll take this kind of "medicine" any day!!

Ai Chi and Water Exercise for Parkinson's

I recently came across a reference to Ai Chi (Tai Chi in the water) and became interested in it's possible benefits for Parkinson's patients. I have not tried this exercise program yet, but wanted to pass along the link for the books and CDs that I found available at aquagear.com.  They are a swimming supply company online and have many books by Ruth Sova who has developed instruction materials (including CDs and DVDs) for Ai Chi. There is, also, a book available from aquagear called "Water Exercise for Parkinson's". I'm ordering some of this material and plan to help Don "get back in the water" and try some of the exercises with him.  I'll keep you posted on how this all works out.  If anyone has had experience with Ai Chi and Parkinson's I'd love to hear from you.

Archery and Parkinson's

Just before Christmas, Don and I were at Cabela's (one of Don's favorite hangouts) when Don decided to try out one of their youth bows to see if he could pull a 15 lb. bow and maybe be able to try target shooting again.  When he enrolled at Cal State LA, low those many years ago, he found that he needed a 1 credit class.  He saw some people out on an athletic field who were shooting bows at targets and he asked if this was a class...the coach told him that it was a team, but if he could shoot well enough he could sign-up for the team and receive 1 credit for participating on the team. That sounded like fun to him, and since he had done some bow hunting, he tried out  and became a member of the team.  So, you see, archery was like anold friend that Don hadn't seen for awhile.
We bought him the 15 lb. youth bow and some arrows and he started going to the indoor range that is near our home. By mid-January it was evident that he was getting strong enough that he needed to get another bow...this time a 25 lb. recurve. Don has been going to the indoor range and shooting from his wheelchair about 3 times a week; he's made lots of friends and since I can drop him off and know that there are people around him who care and will remind him of medication times and be there to help if he needs it, I have 2-3 hours to myself; without worry.  And Don will be picking up his old college bow (a 30 lb.er) next week. Archery has strengthened his right arm and given him friends; a challenge and something to look forward to having fun.  Archery has beed good for both of us!! Sure beats using Thera-Bands and an upside down patio table to shoot day-old-bread balls to the ducks!!
SERIOUSLY...here's proof...

...and Now We are Three...

Sadly we have just learned that our 42 year old son has Parkinson's...when it comes to PD you really don't want to be just like Dad.  Although, if you must have PD being like Dad in attitude isn't all bad.  Don has kept his sense of humor and his determination to stay active in life. Don returned to shooting target archery (more about that in a seperate post) . We have contacted all eight of our children and our neurologist has refered us to the PaGeR study (Parkinson's Genetic Research Study). I have contacted them and left a message; hope to hear back from them soon. I'll post more about the Study and put a link to their website in the side bar. 

Florida: It Was SO Worth the Trip!!

We just returned from a week spent with our kids and grandkids in Florida. Traveling is always a BIG Deal with Parkinson's! Packing and remembering all the things we need to take with us is exhausting even before the trip begins...Don's Meds, check; Carol's Meds, check; manual wheelchair, check; electric toothbrushes, check; extra unders, check; Living Will, check; Power of Attorney, check; walker, check; etc., etc. Oh, Yes...and a huge kite for Kami's Birthday and the "butterfly in a jar" and "firefly in a jar" that slowed us up going through security( even more than usual). We had such a good time, in spite of Don falling out of A.J.'s bed, and briefly losing his suit pants at the temple (belt too loose and no suspenders). It's way TOO HOT and HUMID in Florida this time of year, but we wouldn't have missed the long awaited Hashey Family's sealing and spending every morning in the community pool at Jessica's was refreshing. We just can't figure out how people lived in Florida before air conditioning. We missed the best week of summer (so far) in Seattle and traded it for rain and thunder storms in Tampa, but how we loved being with the kids and grandkids! Don bought Truman a bow and arrows so he can go hunting with his dad this fall; I enjoyed working two puzzles with Kami and Jessica and playing their new digital piano and listening to Kami practice. We watched Kami's dance class and A.J.'s gymnastics. They treated us to the CherryBerry Frozen Yogurt Bar and Kobe, Japanese Steakhouse and a local family's grill (with the best hamburgers ever!!) and of course, we went to Chick-fil-a and breakfast-for-dinner at IHop. All of that, and the lunch with Mindy and Billy and family and friends at Olive Garden meant that we were fed and entertained like royalty. A BONUS was when we were able to volunteer for a later flight when our flight was overbooked (Thanks to Jessica for being flexible picking us up) and were rewarded with a voucher worth another trip for the two of us...Yay!! We'll be going back again next year for Alishia and Zach's wedding...in June...(oh, why couldn't they have chosen January or February?)!!

Falls: Rearranging our house and lives to prevent (or accommodate) them

Don has been falling a lot more these days, so today we had a visit from an Occupational Therapist to evaluate and make suggestions on how to make things around the house safer and perhaps prevent some of these falls.  She made some good suggestions and we acted on a couple of them right away.  We have removed the sliding glass doors from the shower (Don had fallen against them from the outside and knocked them off the bottom track); I have replaced them with a shower curtain.  We still need to get another grab-bar up high near the toilet so he can hold on while he pulls his pants up.  She also, strongly encouraged him to use the toilet from a seated position, only.  We will also be getting a bench type shower chair so he can sit; then slide into the shower in a seated position.  We plan to put the rails back on his hospital bed and re-install the trapeze so he can use it for repositioning himself in bed.  We will also be looking into getting a security pole to place beside his bed to give him help in getting to a standing position when getting out of bed.  We also, went to look at lift chairs and ended up buying one...it is SO COMFY and really helps him to stand from a seated position. Several months ago we had rugs and carpets removed and installed laminate wood flooring  to prevent tripping.  After all of this...I was just dozing off for a little nap when my cellphone rang and it was Don (he keeps his cellphone on a lanyard around his neck)....I didn't know that he had decided to go outside and bring in the trash can...he was calling me to say he was in the carport and needed help.  I went out the backdoor and found him face down on the driveway; lodged between his power chair, his scooter and his manual wheelchair.  He was not hurt, but just couldn't get up...I put the removable seat cushion from the wheelchair under his head and got a sleeping mat from the camping gear in the shed, to put under his knees.  He tried for several minutes to get his bottom to raise up so he could get to his knees; then finally told me to get the retired Master Sargent from across the street. With the two of us, one on either side of him, we were able to get him on his feet and seated in his power chair.  About a month ago he fell backwards down the back steps while I was trying to unlock the backdoor...I grabbed for him, but to no avail.  He just curled up in a ball and rolled to the bottom of the steps; again, he was not hurt...but I was a wreck!
He is sure cashing in on his athletic abilities/training...I'm sure if I had fallen as many times as he has, I would have broken many bones and would display many scars, at the very least. We'll keep working on all the safety options, but, honestly, Don says he can never tell when he will fall...his legs just suddenly give way and he ends up "on the deck".  It's not like he gets any warning or can tell what might cause him to go down.  Sitting to remain mobile is his best option now...sounds like a contradiction, but, really...it's harder to fall when you are sitting.

BREAKING NEWS..... information about Parkinson's Clinical Trials

The PDtrials.org website is closing as of July 3, 2012.  You can sign-up to receive information from the Parkinson's organizations listed below, by going to PDtrials-Information-Request or contact David Blomquist at info@pdtrials.org

* The American Parkinson Disease Association
* The Michael J. Fox Foundation for Parkinson's Research
* The National Parkinson Foundation
* The Parkinson Alliance
* The Parkinson's Action Network
* The Parkinson's Disease Foundation
* WE MOVE

Gentle Exercise for Those of Us Who Have Not Embraced the Idea of Exercise in Our Lives

I purchased two more DVDs at the same time as the Yoga DVD and they arrived yesterday.  I watched both of these from the comfort of my sofa and found myself inching to the edge of the seat so I could "practice" the moves while still seated (don't want to get too commited as yet to the program I have prescribed for myself) just trying to e..a..s..e into this exercise thing. I watched "Tai Chi for balance & mobility" with Scott Cole, first and found myself thinking "I can really see myself doing this!".  The lady who demonstrates the routines with Scott is probably in her 80's...this is TaiChi for beginners, older adults and the physically challenged; the workout is designed to help prevent falls by improving balance, strength, flexibility and mobility.  This actually looks like FUN.  The second DVD that I watched is "Qi Gong for Beginners," with 8 easy to follow routines called Eight Pieces of Brocade.  The program is set in a beautiful outdoor setting on the banks of a river with the sounds of nature and very quieting music in the background.  This is a very gentle and meditative practice, but I am anxious to incorporate this series of routines into my morning rituals. Qi Gong is designed to increase energy and vitality and reduce stress and aims to be transformational.  Chris Pei took me on the most relaxing, disciplined whole-body meditational journey and I loved every moment of it...just wish I'd found this long ago.   I want this to be a way of life for me!

For the Bookshelf

Two more great finds for our Parkinson's library.  First, "Parkinson's Disease: 300 Tips for Making Life Easier" by Shelley Peterman Schwarz; I didn't think that after more than 20 years of living with PD in our home that there would be anything that we hadn't tried to make life easier...but...this book is filled with wonderful suggestions for making everyday life at home and while traveling or having an evening out, easier and there were several things that we had never heard about or considered; we will be trying some of these out shortly.  If you or a loved one is newly diagnosed with PD this book is worth every penny of the $16.95 price tag. Next, Parkinson's Disease: A Complete Guide for Patients & Families by William J. Weiner, M.D, Lisa M. Shulman, M.D. and Anthony E. Lang, M.D., F.R.C.P., is exactly what it claims to be: "a comprehensive resource for coping with medical, emotional and practical challenges" of Parkinson's Disease.  This book, published by Johns Hopkins University Press is the most comprehensive and up-to-date book that we have found on PD and , while it is very thorough in covering all aspects of the disease, it is very easy to read and to understand; not steeped in complex medical language and doctor talk.  If you only had one resource for your information about Parkinson's, this would be the one we would choose.

Yoga for Movement Disorders

My latest find is this DVD  designed to be a companion to the book by Renee Le Verrier (although I am using it alone).   Renee is a certified Yoga instructor and Parkinson's patient who specializes in adapting traditional poses for people with movement disorder.  This two-hour video includes: warm-up series; morning, afternoon and evening flows; sun salutation.  There are standing and seated versions of each, as well as tips concerning balance, posture, and tremor.  I am excited to begin a journey with yoga as a daily practice to improve my balance and flexibility and to help rebuid strength. I believe it will be $14.95 well spent.

The Challenges of Care Partnering

This post title is taken directly from Anne Cutter Mikkelsen's book Take Charge of Parkinson's Disease: Dynamic Lifestyle Changes to put You in the Driver's Seat .  The mailman just delivered my copy of Anne's book and I have spent much of the afternoon reading some of the chapters and purusing the recipes. The chapter titled, When a Spouse Becomes a Caregiver, by Nanette J. Davis, Ph.D. lists nine positive aspects of care partnering; she refers to these as "gifts", and they are:
     1. Having an open heart.
     2. Connecting with the generations.
     3. Expanding your coping abilities.
     4. Willingness to experience role reversal.
     5. Reinvigorating family relationships.
     6. Strengthening bonds with the community.
     7. Giving back to others.
     8. Expressing our spiritual values.
     9. The importance of self-care.

As I read about each of these I came to know how they truely are gifts to me as I face my own journey with Parkinson's.  I am reminded of the miraculous blessing it is to have a Father in Heaven who knows and loves me enough to have helped me open each of these gifts as I have cared for Don and our son, Scott, so that I would have these "present" in my life as I confront the  challenges of Parkinson's in a very personal way.  The suggestions for reducing caregiver stress are also, "gifts" I can give to myself (and Don) to bless and sustain us in the coming days.  They are:
                                   1. Start a regular and realistic exercise program.
                                   2. Strengthen your social network (know your neighbors)
                                   3. Follow a well-balanced diet (fruit/veggies/grains)
                                   4. Avoid eating or drinking too much.
                                   5. Breathe deeply throughout the day.
                                   6. Quiet your mind with meditation, yoga, reading or prayer.
                                   7. Be impassioned about your life.

My favorite "gift" is number six.  My favorite scripture is "Be still and know that I am God."  I am, after all, one of his children and he loves me and he walks with me daily.  My role is not to ask "Why?", but to ask "What do you want me to learn or teach through this experience?" Don has been a great teacher for me and we are blessed to have each other as true "care partners"...I love that phrase.

Yellow Birds for Parkinson's

I've found yet another wonderful website to share with you. Just click on the link in "Favorite Blogs" (at the right) then click on "Blog" and be inspired by this couple's story!

Unfortunately, these birds are no longer available, but the example set by Mike and Anne is one that will benefit all who hear or read their story.

Out of the Mouths of Babes.....(meaning Grandchildren...

...NOT blond, curvaceous women!)

Calvin: "Did Grandpa forget to take his pills?"
Me: "No, He just took them."
Calvin: "Oh, I guess they're just not down to his feet yet."

Emma: "Look! Grandpa's hopping!"

Josh, as Don tries to get his feet moving through a doorway: "Grandpa, your feet are stuttering."

3 year old Meegan, sitting on the front steps; looking dejected, as Grandma and Grandpa arrive for a visit: "My life!!...it's not fair"
Grandpa: "I know just how you feel, Meegan."

Wobbly Williams and the TryAthletes

Just found this GREAT Blog. http://wobblywilliams/com/  humour, hope and Parkinson's. This blog is out of Scotland and one of their tabs is for TryAthletes; I feel like that is the perfect way for someone of my inability/untried-ability to begin thinking about an exercise program.  As the mother of an Ironman (who now claims to be a Titianium Alloy Man...since his near fatal accident that nearly severed his foot and resulted in a long plate and many screws to hold his foot together at the ankle) I have to admit that I have been totally unmotivated to do much in the way of exercise and my body is showing it.  Now, since my Parkinson's diagnosis, I am convinced that I must become a TryAthlete and get myself on the adult tricycle that sits unused under the carport and get back in the swimming pool, if only with the senior water-walkers.  A yoga class might be fun and I've heard that Tai-Chi is really good for balance. For the past twenty years I've encouraged Don to keep active and I've excused myself because taking him to all his appointments, etc. took up too much of my time.  No more excuses, I've only been kidding myself, anyway...this is long over due! I think that the very least I can do is become a "TryAthlete".