Parkinson's Disease Tulip


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Old 07-07-2007, 09:21 AM #1
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Default Weekly Check-In July 8-14, 2007 Welcome New Community Members

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?

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Old 07-07-2007, 10:51 AM #2
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Default Not much new

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.
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Old 07-07-2007, 12:48 PM #3
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Default Amantadine & 54

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
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Old 07-07-2007, 07:00 PM #4
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Default Amantadine

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.
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Old 07-07-2007, 11:31 PM #5
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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
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Old 07-08-2007, 09:10 AM #6
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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
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Old 07-08-2007, 10:41 AM #7
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Default Still hot - Still broke - Still happy

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.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 07-08-2007, 05:07 PM #8
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Default Cere 120

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.
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Old 07-08-2007, 07:51 PM #9
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Default Yopn 2007

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)
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Old 07-08-2007, 08:16 PM #10
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Default alive and well ... I think

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
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People will forget what you said,
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but people will never forget how you made them feel.


Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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