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.