I hope these will do for now.

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I didn't think I could do it. There were about a dozen hours of rehearsals between Friday evening and Sunday afternoon. The concert was to be two hours long. Although the front row was set up with chairs so that those of us who needed to could sit the whole time, I was sure it was too much. I asked the assistant conductor which rehearsals I could miss and still be able to sing the first half or the second half of the concert. He said that there was no fixed order, that the conductor or he would follow their creative sense of what the chorus was ready to do, and that I should just decide for myself and do the best I could.

Humphf! ME make the decision? but I have PD, I wailed to myself. They should know I don't have the stamina to do it all nor the brain power to make a decision! (You can tell I was already tired, and stressed by all the people and excitement.) I thought, They should have read up on PD! No, that would be silly, since about 10% of the members seem to be sitting in this row with me, and they all have something.

In the end, I didn't decide. I forgot about deciding. The music drew me in and sustained me. From the difficult harmonies and drawn-out meter of Samuel Barber's Kyrie (with the same notes as Adagio for Strings) to the spiritual "Oh! Freedom," I was swept away by joy at each rehearsal. My voice was in fairly good repair from singing in the empty house daily, and I was careful to stick to my med schedule and drink plenty of water. And the discipline that had been drilled into me at age 17 and earlier in musical groups came to the fore and blotted out the horrid PWP apathy.

The concert was magnificent. There was a standing ovation--maybe a few relatives and friends in attendance were a bit partial? We sang an encore, and it was over. And I did it. A miracle.

My beloved, understanding what an effort it had been for me, came right to the stage to help me. We each took a turn in the loo. As he came back from his turn, as we were about to go outside, a woman emerged from the crowd saying my name. It was all I could do to focus on her. Suddenly, I recognized an old near-and-dear friend of my sister's who had also been a real friend to me! My arms flew open, I called out her name, the hug was warm, and we quickly established that she had lost touch with my sister, to her despair, and that I would take her e-mail address and home address to Washigton State with me. Another miracle.

I had seen some of my ex's family at my daughter's wedding two years earlier, and we had all had dinner together. This time I had just sung with sister and brother, and ex wasn't around, nor did anyone refer to him except to mention that they had issues with him. A slightly different group was present than at the wedding. We were all relaxed and thoroughly enjoyed one another's company. It was especially nice to see my former mother-in-law again. At 91, she's quite a pistol. By then it seemed routine to have given each of the family back to the universe, but nonetheless it was another Miracle.

The rest of the trip was also deeply rewarding. I held my first grandson in my arms for the first time. He turned one year old this past weekend. He is a brilliant, creative, personable little guy--just like everyone's grandchildren.

We visited Mo (maryan) briefly on the way to see our grandson. She is one tough lady, with an absolutely indomitable spirit. What an inspiration.

Old and new PWP friends: other than our visits to Laura Jean, Marcie and Tom, Mo, and Paula, Carey (indigogo) also found time to drive to us in Washington; I hadn't had a good one-on-one with her in a long time. And you all know Paula and I are good buddies.

The western part of the trip had started with at stay at my sister's in Washington, incuding time with one of her daughters and her young family, the grandchildren always a delight, and very curious about their strange great-aunt. My daughter and her husband flew up from California to share in those gatherings. There's nothing like being the visiting "celebrity" among your own. Quite a happy time!

One day when we drove into Portland to get more familiar with its neighborhoods, we were having lunch in a downtown grill when our waitress noticing our maps and books, asked if she could help us with any information about the area. We asked her a lot of questions, and she answered them all, even marking the good areas on our maps. She said she had been looking for a different place to live herself, and that we reminded her of her parents, so she was surprisingly prepared to help us. Another miracle, or at least a lovely little gift.

We stayed with old, near-and-dear friends of my beloved's (and mine for the last 28 years) in Portland and Bellingham, and had a quick visit with a choir friend from our church here who now lives in the Portland area. We visited my husband's ex, too, in Bellingham, where she and her husband are moving once their house in the DC area is sold (I think this has happened by now. We get along well with both of them. After all, she and I are co-grandmas--I am accepted as such by her my stepchildren--and share the same obsession!

The difficulty at all times was not so much the exhaustion, nor the quirky way I move, but the psychosocial aspects of the disorder. It was so hard to describe how easily distracted I am, or how shocking the noise is when a couple of dogs are barking, and that I'm not being grouchy when I say I can't pick words out of the background noise when someone is talking to me. The sheer mental effort of staying oriented to everyone, of taking my meds on time or adjusting them to expected meal times, even of stating a preference when asked, left me looking inexplicably confused at times. It was impossible for me to remember to control my facial expression, and I tend to look mad or disgusted when my mouth curls up into the dreaded tongue-sucking dystonia. Straining to keep up with all the rapid conversation, I would forget to ask after someone, or neglect to thank everyone who helped me. Their patience was remarkable.

Even my beloved, whose reminders and assistance got me through such busy days, grew tired of hearing me complain on the way home, while to me it seemed I was being as nice as possible while operating way beyond my capacity at 500+ miles a day of riding in a light SUV that handles like a pickup truck and admits a lot of road noise. It took six days to get home from Bellingham.

We took a little break about half way to stop at Mt. Rushmore and drive through the nearby Badlands. In the short time we alotted for getting out and sightseeing, I chose to to sit on a bench and let the breezes caress my cheeks--some of the loveliest moments of the week to me.

The last day was a short one, which gave us time to stop at a favorite restaurant for our anniversary dinner before we quite made it home. My delightful partner of 28 years said that if anything had gone wrong at the house in the last four weeks, he'd rather face it on a full stomach. But everything was fine, and we had been on a journey, a shift in our viewpoints at 62 and 64 years old, that would enrich us for the rest of our lives.

Jaye

The difficulty at all times was not so much the exhaustion, nor the quirky way I move, but the psychosocial aspects of the disorder. It was so hard to describe how easily distracted I am, or how shocking the noise is when a couple of dogs are barking, and that I'm not being grouchy when I say I can't pick words out of the background noise when someone is talking to me. The sheer mental effort of staying oriented to everyone, of taking my meds on time or adjusting them to expected meal times, even of stating a preference when asked, left me looking inexplicably confused at times. It was impossible for me to remember to control my facial expression, and I tend to look mad or disgusted when my mouth curls up into the dreaded tongue-sucking dystonia. Straining to keep up with all the rapid conversation, I would forget to ask after someone, or neglect to thank everyone who helped me. Their patience was remarkable

Jaye,
This aspect of PD - relating to others - has almost completely robbed me of the motivation to do so anymore. I do better behind this screen. A good dinner companion I do not make. Talking on the phone - well let's just say I can tell when others don't listen. The social/pshychological aspects of this illness are by far the worst part now and patience is at a premium.

Thanks for a Charles Kurault post that was as enjoyable as his Sunday Morning program about his travels used to be. Of course, there were "moments" where PD rears its ugly head higher than the rest of it. But you conveyed the largely delightful trip in a style uniquely comforting that had me wanting more.

You really should write more often.

paula

I spoke with Laura Jean today by phone. She's enjoying some time with friends and looking at "the other ocean" and healing, healing, healing.

There was a phrase I used when I first described my summer journey (see above story) to her, and that was "I own my whole life!" With the new perspective I'd gained and all the good things that had happened, all the good memories came forward and all the bad memories were no longer in focus. And that's healing, too.

Still amazed at the wonderful people that Parkinson's brings.

Jaye

this is the first time in my life that i make the calls, blaze the trail, call the shots, whatever.. just for me. i got married at age 16. out of mamas lap into hubbys house with a child of my own. since then, i have always.. always.. had another person to consider when making life decisions. either my children, or a spouse. now.. it is me.. just me.. and.. i think i love it.

i dont give a crap if i have pd at this point. pd has not been a prison for me. there are times i felt it was, but as i cruise across the country i am freer than i ever have been. i have so much love and support from the people i have met through online pd communities, that i am finding the void being filled. i am finding life. i am finding out who Laura Jeanne is. not the person who has pd, not the mother, not the wife, not the daughter, not the musician, nor the poet.. but me.. just good ol Laura Jeanne.

i began this thread as reclaiming.. i am changing it to claiming. I claim the peace i feel while in a supportive environment. I claim the harsh bite of pd when its bad, and the knowledge that this peace will help me through it. I claim the confusion of not feeling complete confidense in my decisions with an acceptance that i have never been allowed the freedom to make them just for me before. I claim feeling naive in self awareness and discovery. yet, at the same time, i claim the strength that God has given me to find my true purpose. i claim every feeling that is surfacing as one of importance whether or not i dissect it, or put it on the back burner, or throw it to the wind.

I am healing.. yes, jaye.. and i am finally finding out what it means to heal. the importance of this healing cannot be understated. it is essential to my soul. from alabama to sc... now wed, off to nc, then atlanta.. from there.. where ever the wind takes me.

i am finally.. finally.. discovering me.

Self discovery is an amazing journey..Mine started 18 years ago when I sobered up..I was at an AA meeting last night, and the chair person said something that I hadnt thought about..She said.."Something happened before I came here tonight, and I didnt have to allow it to ruin my day"

There was a time in my life when everything ruined my day, and everyday, something happened, and usually, I was the cause of it..I dont cause too many problems for myself anymore, and when things do happen, I dont dwell on them, or wallow in them, or spend my waking hours worrying about them..Pd cant even ruin my days..It ruins moments, but not days..I found the strength, and the ability to accept life on its own terms..I used to predict and manipulate out comes of situations, and constantly put expectations on people..I later learned that an expectation was a pre-meditated resentment..I used to always focus on what I would like life to be, instead of accepting it for what it was, and being content with it..Always sholeling **** against the tide, instead of going with the flow

Its really good to hear that you are enjoying your newfound freedoms Laura!..Rock on my dear!!