[Stitcher]

Good day to everyone ,

No much to report here. My new "refurbished" laptop is doing its job pretty well and I am delighted . I have not yet gotten someone to capture my files from my PC hard drive yet, but hope to do that the week of August 1st, after the 1st of the month. It is hard though knowing there are important documents on a trashed computer that I can't get to right now.

I have my second appt with my new MDS tomorrow and it will be interesting. Thursday I have a Governor's [PA] Advisory Committee for People with Disabilities workshop at the local Harrisburg Area Community College (HACC) campus in Gettysburg. I will let you know next Sunday how that went.

My grands are as always a handful...the usual. The oldest (11) left last Sunday for six weeks in Florida visiting her biological dad. We don't like it when she is gone so long...we all try not to worry about accidents and such, but we do anyway...quietly within our own minds. My grandmother duty days last week were Monday and Wednesday. It is amazing how different my oldest grandson (8) is when his sister is gone...amazing!! Mornings I read since my autistic grandson is at school in the mornings in July. The afternoons are spent going up and down the stairs checking out what he may be up to upstairs

I am reading Imajica by Clive Barker. After Imajica it will be World Without End the sequel to Pillars of the Earth a historical novel, by Ken Follett. The library is my best friend this summer.

So, how was everyone's week?
Let's hear from some of you quiet PWPs!!
What are you reading this summer?

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[jeanb]

I'll be gone on the trip East for 9 days. (Yale first - then Boston - then DC.) This will be hard on my Dad whom I visit several times a week. Dad is 85 and has alzheimer's and lives in a memory care wing at a retirement community near me.

Anyway when I go on a trip, I write a short letter to him for every day I"ll be gone. I give all of those dated letters to the nurse, and she gives him one for each day. I write things like: Monday, July 27, I'll be on a plane flying from Phoenix to JFK to go to a clinical trial ... Tuesday I have a neurological exam and get the injection... etc etc.

These letters help Dad remember that I love him and am thinking about him every day.

I hope everyone has a good week!

[Stitcher]

Jean, if the day comes that I have to deal with what you are dealing with about your Dad, I hope I can do it with as much compassion and empathy as you have done.

You have shared with me about what you do with your Dad week after week. You are indeed a wonderful and thoughtful daughter!!

Have fun in Boston and D.C. The Yale part I know will be tiring and looong!
How long will you be in D.C.? I could sneek in by Metro and check up on you !

Carolyn

[jeanb]

Stitcher -

The Yale part will be FUN FUN FUN. My cousin is meeting me at JFK and truly other than an hour on Tuesday for neuro exam & then beta-cit injection, and an hour on Weds morning - - our time is free. Yale is such a beautiful campus! And there are terrific restaurants near our hotel I'll push my cousin in the wheelchair and we'll just sightsee and eat out.

I'll only be in DC overnight - then my nephew will drive me to his folks' farm in Marshall. My sister in law & brother in law are both unwell, and I want to see them very much

Thanks about my dad. I"m happy to do it. He is such a kind wonderful person. I don't mind that my mom signed all responsibility over to me. It means that I can have him near me. He knows I love him, and if he needs me, he calls and I am just 15 minutes away. And I really cherish our visits together.

[indigogo]

Carolyn - It's hard to let the kids go! Every summer since she was six, my daughter flew to Colorado to spend a month with my mom and dad - her Grammy and Poppy. It was so hard to put her on that plane, but boy did she always have a good time! She's 20 years old now; 21 in September. Next month I will put her on a plane to Moscow, where she will join 10 University of Washington classmates and 10 Russian university students to ride the Trans-Siberian railway to Beijing, China. She's a well-seasoned traveler now!

In the meantime, I'm waiting right now for her to return my car - she's had it with her in Seattle for a month, and I have cabin fever (luckily for me, most services I need are within walking distance).

Jean - I am so glad my daughter had those long summer vacations with my mom because she is now suffering from Alzheimer's. My dad (75) is being a real trouper - he has totally taken over all of the house work - runs it like the military - but I am more worried about him than Mom - they've been sweethearts since they were 13; married 54 years. I have a lot of family in the Denver area, including my sister and many of my mom's siblings; she is well cared for - but I have been trying to get back as much as possible (of course, my dad is just as worried about me with PD!).

Take care, Everyone!

[vlhperry]

I am reading a book by Geeta Anand, Pultizer Prize winning reporter for the Wall Street Journal, titled "The Cure" How a Father raised $100 Million and bucked the Medical Establishment in a quest to save his children who had been diagnosed with Pompe disease. I am only about 1/2 way through and am anxious to know how he did it. He also worked in upper management of a major pharmaceutical company. He has a business degree from Harvard and is a wonderful fund raiser and is able to earn enough funds to influence the direction of research.

Yesterday I read "Dancing at the River's Edge," by a patient, Alida Brill, with a immune disorder and her doctor Michael D. Lockshin, M.D. The patient has the same doctor for 30 years or more and gives her story as she sees life living with a chronic illness. Then a chapter or two are written by her physician as he gives his view of treating a patient with a disorder. The doctor attempts to give himself a sensative and caring personality.

I had a hard time seeing him that way although if you are in the medical community, you would probably emphathize with him. The physician discusses "negotiating" with patients regarding treatment. He believes this is necessary because the patient is living in the moment where he has experienced many patients with the same disorder and is familiar with how to expect the disease run its course.

I would reccommend either book for reading to encourage readers to view living with a chronic illness from different viewpoints.

A more pleasant topic would be about my recent trip to Washington state where my fathers family was from. I found two living relatives I was unaware of who also had Parkinson's Disease on my Father's maternal side, and several family members on his paternal side who suffer from Bi-Polar disorder, and a suicide. Three members of his Paternal family (Durham/Irish) married 3 members of his maternal family (Kenney/English). I was interested in the combinations between the two families. The sightseeing in Washington was stunning to say the least. I even saw a seal in Puget Sound when taking a ferry to San Jaun Island.

[jeanb]

I'm glad you have a happier family than mine. My mom seldom visits my dad, although he asks about her often.

WOW - what a trip your daughter will be taking -- trans-siberian railway to Beijing!!! that's amazing & wonderful!

[indigogo]

Vicky -

So happy to hear you had a good visit to the Puget Sound area! Did you take the ferry from Anacortes to San Juan Island? If so, you probably drove through the area where I grew up - Mt Vernon in the Skagit Valley. I spent many summers at a friend's cabin on Orcas Island, and I still live in the general area. When I was married, our house looked over the water, and we could see the gray whales playing and hear them blowing - along with the sea lions barking!

Jean -

I really admire what you are doing to take care of your dad. I don't think I'd have the energy. I feel guilty about not being with Mom more often - but when I am there, I actually feel in the way - Dad has such a routine, he doesn't like anyone in his kitchen!

I'm living vicariously through my daughter's travels; she's lucky that her financial aid is paying for the trip to Russia - it's one of the UW's Global Seminars; they will be accompanied by a professor of Urban Planning and Design and getting full credit.

[Stitcher]

Wow...family...children traveling...good books

Washington State is a beautiful state. I was there twice...2007 to see my son off to 15-months in Iraq and 2008 when her returned to Ft Lewis. He took me up into the mountains where I sat for almost two hours while he went to the top and snowboarded all the way down...he was one pooped soldier. I did get to visit the Pike Place Market in Seattle. It is like Reading Terminal Market in Philadelphia...places you don't want to miss when you visit.

Our Amy, who is at this time in Florida, began traveling at the age of 4 yrs. Of course, mom traveled with her back then for the trip down. Her dad traveled with her on the trip back to PA...Baltimore airport actually. When she was 9 yrs she began making the non-stop trip from Baltimore to Tampa alone. As anyone can imagine, we were all nervous wrecks until we have the all-clear from her Dad that she was safely in Tampa.

I remember the first couple of years, I don't know who cried the most seeing this child be split from her Pennsylvania family and her brothers...her step dad I think was the most upset in the beginning. Not because she was going to her biological dad, but because she is his daughter as much as his biological sons are her brothers.

As to family, I agree with Jean. If you have great family...hold on to them tightly! Two years ago I asked my two sisters to mend bridge over our childhood and have a sister to sister relationship...I wrote a letter. After a six months wait for a reply, they both replied in an email the same day. We have our families and you have yours...let's leave it at that. Needless to say, I am still an unhappy camper, but I can't force them to do something they obviously don't care to do. My mother and I just chatted about this tonight on the phone.

My daughters and I are the only family living outside of Florida. In Florida we call northerns "snowbirds." I think every one in the east knows this. I guess that makes us "sunbirds." Who knows!

Moscow...Carey, that is fabulous. I have a niece who is 21 yrs. She just return a few months ago from Australia, where she did odd jobs, working her way across the nation. Then she returned to travel with her grandmother (my mother in law) to Italy, so my mother in law could find her family in the hills somewhere far, far outside of any big city. Sadly, she found nonem, but it was the trip of a lifetime for her, so it was successful anyway. My mother in law immigrated with her parents when she was 15 yrs old and they only spoke Italian in the home.

So, many stories we all can tell.

Books...one of my favorites from recent years is Stone From The River by Ursula Hegi. She has a couple of other books that I also enjoyed, Floating in My Mother's Palm and A Vision of Emma Blau. My oldest daughter turned me on to Hegi. Stones is my favorite of her books.

Vicky, the books you describe sound very interesting. I hesitate to tell anyone, but I will anyway. I rarely read fiction. I haven't read any of the Fox books. I haven't read Saving Milly. My life has been too full of crisis and more crisis and I can't bring myself to read anything that will certainly make me cry. I know this means I miss some excellent reading, but...I just can't deal with it all.

[Stitcher]

Okay, I know there are lots who have some great stories to tell
...everybody has them...
trips taken...book read...family funnies...etc.

Time to come out of hiding and chat with us in the weekly thread!!