Weekly Check-In July 8-14, 2007 Welcome New Community Members

[stevem53]

Hi Everyone..And a warm welcome to our new community members!

My birthday was Tuesday, and I turned 54..I didnt celebrate it on Tuesday, because after I finish this thread Im off to my girlfriends house, and we are going to go to Revere Beach and eat some seafood..She lives in the Boston area..I used to dread birthdays, but now its a celebration of still being able to walk, talk, drive, and fish, and that is a call for celebration

Kind of a uneventful week..I dont usually do anything on the 4th because the traffic is ridiculous, so I went out on my boat for a couple of hours and spent the rest of the day hanging out at home

So thats about it for me..I hope Carolyn is coming along fine..You have been missed

How was your week?

http://i106.photobucket.com/albums/m250/slowhand_01/Getoutofjailfree-scooterlibby-jpg.jpg

[JoClay]

Didn't do a lot this week. We celebrated the 4th with a BBQ; the weather was really hot (98), but good friends made things bearable.

The only thing new this week was adding a new medication. The doctor prescribed Azilect (0.5mg for the first 2 weeks followed by 1.0mg the following 2 weeks), and at the same time slowly getting rid of amantadine 3x's daily. Now it's just a wait and see period to determine whether the azilect will be helpful or harmful. (I know what I'm hoping for!)

Hope everyone that was traveling this holiday makes it home safe.

[Suffolkchris]

Jo

Had the Amantadine stop working for you or were you having side effect problems? Do you take anything else as well?

I am interested because I was also taking 3 x 100mg of Amantadine a day and have been easing myself off them because of problems with headaches and I think they were also making my fatigue worse. I am considering seeing my Neurologist to ask him to replace them with Azilect.

I also take 4 x 125mg of Madopar (similar to Simemet) a day.


Steve

I was also 54 this year, don't know why but I hated it.
I was ok with being 50 but for some strange reason 54 hurt lol.

"Memory brushes the same years quietly sharing the same fears"

Chris

[JoClay]

Hi Chris,

The amantadine is being stopped because it is causing some mottling of my feet and ankles. Also, I have been taking amantadine for almost 3 years, and it is no longer giving me the help with my tremor. When I first started taking it, it seemed to work much better. I understand that some people stop it for a while, and then start it again at a later date.

Right now I am taking stalevo and requip every 8 hours, so the azilect is something I'm hoping will take the place of the amantadine. Fortunately everything I am taking seems to be working well. I am in my 9th year of Parkinsons and lucky to be progressing slowly compared to others I've corresponded with.

[made it up]

Happy Birthday Steve!
Hope I'm not hijacking the weekly check in with this questiion but ......
Jo and Chris, I take Amantadine 3 x daily and find it really helps my gait.
Like you Jo I have the purple mottled thing happening only it's all over my legs.
I was wondering if apart from cosmetically it being ugly there are any side effects from the rash?
Cheers,
Lee

[GregD]

Happy Birthday Steve!
Not much happening here PD symptom wise. Same old stuff different day.
My daughter again was selected to travel with the People to People Student Ambassador program this summer. They were in Dublin, Ireland last week when the terrorist attack on the airport in Scotland happened. That made for a few tense parents. We were afraid events in London would prevent them from seeing the sights there but they got to see everything. Tonight they will be taking a ferry from England to France. We have talked to her a couple of times. She is having a ball.

GregD

[reverett123]

:) Miserable weather keeping me from fishing. Financial thing looking better though still suspenseful. Should know a lot more this week.

But all that is overshadowed by the growing belief that this darned ginseng is really doing it - if not curing at least improving. Doing better across the board and starting to inch back on meds. It has occured to me that I have a pretty good yardstick to measure this with too. Almost exactly a year ago I spent some time as the guest of our own Ron Hutton. I remember well what I could do and what my limits were. I need to look back at my journal to figure out what my meds were at the time but as to function I estimate that I am ten percent improved over then.

I guess it is a good week. :D

[Dottie]

Hi -

I had my staples out on the 5th of July - all 30 of them - at least one remains and will have to come out this Tuesday when we make another trip to philadelphia for lab work.

Today is my husbands birthday. It's easy buying him gifts because he has a boat and there is always something new that he wants. This time he wanted the personal size Epirb. He's been so involved in my participation with the Cere 120 trial that yesterday he went out for tuna - unfortunately they didn''t catch anything - not even a nibble.

[chasmo]

It was a blast!! I went to Peggy's seminar and met both CHeryls, Magda and her hubby and Steve Balven and his wife. they all were ton's of fun and we had a great time!!
I met Mary Frances there. SHE is even more beautiful in person! A very nice lady!
I'll write more tomorrow, I am SO burned out now!
US Air is NOT a good carrier for disabled people! (more later on that!!

Charlie)

[proudest_mama]

Wow, wow, wow ...

How can I possibly have so much in common with all of you?!

Busy week ... not a real great one ... but ending on a good note so that's the most important.

I, too, was switched to Azilect. I was truly concerned about switching. The Artane was what stopped my tremor cold.

I now have toe curling, which I was hoping could be treated with a muscle relaxer, but it's not doing the trick. Tomorrow I'll ask for a referral to see a Chiropractor. I am tired of walking funny, hurting all the time, and taking lots of Ibuprofen.

Greg, wherever we live, I do a "newspaper type newsletter" every Christmas and I always make it lively (now, does that surprise anyone?!). When we lived in Oklahoma, a section said that anyone wanting to visit needed to make reservations because dates were filling up quickly. They simply had to dial 1-800-tornado. Our most current one said that anyone visiting Houston simply had to call 1-800-traffic. When we lived in Europe, I said that my parents took a ferry and anyone wanting to visit needed to call 1-800-upchuck, so I'll be anxious to hear how your daughter made out!!

More later but I'm just glad that the week is over ...

Terri

[Evon]

Happy birthday Steve. I'm still tuning in to see how everyone is doing. Had a busy July 1st weekend (Canada Day). Went to a wedding in Toronto, the reception was on a yaught called "The Yankee Lady". Watched the fireworks at the Harbourfront. What a great weekend! The weather here is getting hot and humid, yes bring on the summer. Just chilled out this past weekend. Hope all is well with everyone.

[Ronhutton]

Hi All,
Still here, and a month after falling when next to my greenhouse, still having trouble with my shoulder. I smashed into 2 large panes of glass, and got a large piece embedded in my shoulder. One month later, though healed, it is now swollen like a ball. I have to go back to hospital for X rays this week.
It has not stopped me laying 80 flag stones, for a base for a new garden shed. I got rid of the greenhouse and demolished my old shed, and am now putting a much larger shed on the site. Don't know why you folks are concerned about being 54!! I'm over 70.
Rick, is it a year since you came to England, time goes fast when you are having fun!! We enjoyed having you and Wanda. Also, had Peggy and her hubby stay with us, equally enjoyable.
Ron

[maryfrances]

Steve

Happy birthday to you
Happy birthday to you
Happy birthday dear Steve
Happy birthday to you

I had a great time in Chicago.
It was so nice meeting everyone.
We had a lot of fun.
It was good to get away.
It was also nice to be with people who understood.

Love ya all bunches!

Mary Frances
:hug:

[EmptyNest68]

Happy Birthday Steve! Sounds like it was a nice one.
We watched fireworks from our front drive; since they were being held on the golf course a little above and over from us, we had a spectacular view, and didn't have to drive anywhere or fight traffic! My son Josh was at his friend's house, which happens to be across the street from the same golf course, and they were able to sit about 50 yards away...he had an even better view.
My sister and nephew visited Fri-Sun, and we had a wonderful time. Took them to the lake for some floating and sun; Josh and my nephew Jhett swam to the nearest buoy-twice-so they were nice and tired. My husband took the boys fishing, too, and they came home with 13 fish! Gary cooks up a mean fish fry, too. We ate pretty well all weekend.
Daughter Sophie (the young pretty one in my avatar? atavar?) purchased a used Volvo this week, she's so excited to have a car again...she is enrolling in her first year college soon and needed transportation. I am excited FOR her.
Not many changes recently in the PD quarter. Symptoms have progressed, but am on carbi/levo 4x a day now, which does help. Exercising was also a big plus...took a few weeks off and am now getting back in to it. The past few months have been very stressful...with about 6 major things going on my our lives, but now seem to be smoothing out.
Have a wonderful week everyone...i hope to make ti to a YOPN gathering one of these days, glad you all had a good tiem...
God bless-Steph

[RLSmi]

Steve, Another Happy Birthday from down South! You have such great, creative ideas on ways to comment on outrageous current events such as the Libby commutation by Bush. Outrageous, but not unexpected.
Speaking of unexpected, July is supposed to be one of the driest months here, and it has turned out to be one of the wettest. I have about given up keeping up with the lawn. I mowed the back last Wednesday and started the front Thursday morning. I got the edges done and the rain began again. Imagine how fast freshly fertilized grass grows when the nighttime temps don't go below 75 F and daytime highs are above 90 F. And then we had weekend guests, a family of 4, with a dinner gathering in their honor of 20 on Saturday evening!
Hope springs eternal, however. The grandson may get started on the lawn this afternoon if he has enough energy after playing tennis most of the day!
One downer; a good friend, a member of our church, passed yesterday after a 4-year battle with gastric cancer. Will be involved in services for him Thursday.
Robert

[kglowienke]

Not sure what the weekly check in is but it appears to be jus a general update.

I also attended the YOPN COnference in Chicago (I live in the suburbs of Chicago) and it was a great experience. This was my first conference and I was able to meet several people I knew from online correspondence. Take a look at my website I have posted some pictures and a story there.


I was DX in 2004 at age 39 and currently taking Carb/levo Mirapex and Amantadine. Generally they work ok but I seem to be having more off days than on lately. I have an appointment with my MDS in a few weeks so there may be another cocktail adjustment. I just keep plugging along.

Talk with you later,

[Jaye]

Sorry about your friend, Robert. Friends in the context of a loving community are the best, whether in churches or on a certain PD forum.

Happy Birthday, Steve, glad to see that positive outlook humming along. Everyone expected me to be a lot worse off by now (8 1/2 years since dx), and I attribute my improvement mainly to exercise and spiritual support.

I have been crocheting like a fiend, having recently finished a shawl (see photo) for our new Rector (chief pastor) and having started a blanket for our first grandchild, due in a couple of weeks. I need to call Mo and see how she's doing.

Jaye

"If you want to keep moving, keep moving." -Bob C.

[stevem53]

Not sure what the weekly check in is but it appears to be jus a general update.

I also attended the YOPN COnference in Chicago (I live in the suburbs of Chicago) and it was a great experience. This was my first conference and I was able to meet several people I knew from online correspondence. Take a look at my website I have posted some pictures and a story there.


I was DX in 2004 at age 39 and currently taking Carb/levo Mirapex and Amantadine. Generally they work ok but I seem to be having more off days than on lately. I have an appointment with my MDS in a few weeks so there may be another cocktail adjustment. I just keep plugging along.

Talk with you later,


Welcome!..The Weekly Check In is simply a thread to let everyone know how we are doing, what is going on in our world, and it has been known to give those with new dx hope that there is life after pd

I was also dx in 2004 at age 51

[Suffolkchris]

I was also diagnosed in 2004.

Perhaps we could start the "2004" club lol

Chris

[Maureen]

Happy Belated Birthday Steve! Keep up your positive outlook and your enthusiasm for life. The very best to you, Maureen

[proudest_mama]

Jaye, Jaye, Jaye ... I've missed you!! It's probably more likely that you've been here all along, but either way, it's great to see you around.

[proudest_mama]

I'm not sure that I want to know the answer, but when was the YOPN? My husband and I are both from the Chicago area (he in Mundelein, me in Libertyville) and we just had a restful vacation in Oak Lawn ... no kids! We were in town from June 23 to July 1.

Does anyone know where it's going to be held next year and the dates?

[proudest_mama]

Steph -

Are you the same Steph from Brain Talk? Your daughter truly is beautiful. It's cool that you included her. I have one daughter and three boys. She had a summer internship this year and has only been able to come home a little. She's doing great, however, is very opinionated (I wonder where that came from?!) and is becoming quite an independent young lady. That's our goal, isn't it? Sophie ... shake the world up and have a great time in college. I can tell your parents are proud of you!

[wendy s]

Oh my gosh, it is SO hot here. It's been 31 C most of the day, then when the evening sun hit our thermometer it went up to 44C ( 110 F). I have NEVER seen that temperature on a thermometer in my life! Our little hospital is only air-conditioned in two small sections, one being mine, but the rest of it (where my in-patients are) will be like an oven. I hate to think of patients lying in their sweat and most of the staff exhausted and dripping sweat. It's going to be a tough few days until the temperature starts to drop next week. I may wear shorts to work tomorrow for the first time in my career.

I've been trying melatonin to try and improve my sleep, and I think it may be helping. I'll report on it again in a couple of weeks.

[rosebud]

just a short entry to say i'm still standing. I have discovered that my desk chair with wheels is a great off-carpet form of transportation when my legs are not working. I have mostly hard wood floors so I have cleared the path an I am MOBILE!!! Yes!

Happy Birthday Steve. I have my 10th anniversary of my PD diagnosis coming up....don't bother congratulating me, even tho you might feel tempted. I'm going to my son's on Tuesday. He lives in a lovely little coastal community and I love it there. I may stay until the end of August. It's been hot hot hot here too. I got two high powered fans from Costco with remote controls. I'm excited.....one less challange at the end of the day.

Glad to read all your posts. I'll check in from my sons from time to time. 5th grandchild due in August....Please Lord, send a GIRL! :grouphug:

[burckle]

Hi everyone. Well, it's less than a week before we make the move to Maine. Early next week the movers will come and begin the packing. On Monday, we go to dinner with friends. We already said goodby to the Parkinson's support group. On Tuesday, one of my former students will take me to lunch. On Wednesday there will be a party at work; The next day will be the closing. The new owner has already done the walk through. On Friday we drive to what I like to think of as the Promised Land (MAINE). Then I will have to decide what to do with the rest of my life. There is a book half finished, courses I would like to take at the local University, more involvement in Parkinson's, playing with my new Grandson (he lives less than a half hour away). I'll come up with something. If any of you happen to wander into the vicinity give me a call. We'll do lunch.

All the best,

Lloyd

Lloyd Burckle
23 Whipple Farm Lane
Falmouth, ME 04105
Phone 207 781-3840