Parkinson's Disease Tulip


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Old 12-14-2008, 09:25 AM #1
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Default Weekly Check In Dec 14-20, 2008

Merry Christmas and Happy Hannukah to everyone!

We moved out of the trailor this week and moved into the Marriot in Cleveland at a Cleveland Clinic discount of $45 per night at Middleburg Heights near the airport..and Laura had to get into the ER at the clinic the night we got here with a splitting headache in the frontal lobe, around her DBS leads, along with severe muscle cramps in her legs..Another ER nightmare!..They said they looked at her records and told her to stop taking her pd meds cuz she "doesnt have pd"..And I told the Dr "yes she does have pd"..He got insulted and obnoxious and said " NO SHE DOESNT!!"..Then I asked him why she didnt walk for two days after the last ER visit untill she started taking Sinemet again..His answer.."Cooincidence"..And then he went on to stress the point that the ER is for people who are in danger of dying, in other words, dont come here if you are inexcruciating pain unless you're dying..Then we find out they werent looking at 24 years of records, they were looking at the last ER visit a couple of weeks ago..Then when 1:00 am rolled around I told the nurse that I had pd and that we had to wrap things up cuz I had to drive back to the hotel in the pouring rain,and that I was tired, she understood, but when 2:00 am rolled around I told her we have to leave right now, so they made Laura sign a paper discharged against medical advice..ER's..Ya gotta love 'em

Her appointments are this week..Hope to get some answers finally

How was your week?
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Last edited by stevem53; 12-14-2008 at 01:04 PM.
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Old 12-14-2008, 11:45 AM #2
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Smile

Well, Friday was the performance of my tap dance class. I went to my first class in mid Nov. and it was a lot of fun, even though I tire easily and have to sit down from time to time. The steps came back to me easily and the teacher asked if I could dance in their show on Dec. 12. There was to be a holiday luncheon and band concert that day with the tap dancers doing 2 dances. This is all taking place at a senior center. I reached the minimum age of 55 a few months ago.

The class was on Fridays and on Tuesdays we would get together and practice without the teacher. Now the teacher was not feeling well the day of my first class and did not dance with us. Then we practiced 2 Tuesdays without her because there was no class Thanksgiving week. So I go to the center for the fourth time and for the first time, the teacher dances with us. The teacher has difficulty dancing with the music and confuses everyone! After class, I ask someone who is also a musician, how can this be, the teacher does not know how to stay with the music! Well, I am told, she is just a volunteer.

Now, there is one young lady who dances with us- she happens to be pregnant, so we know she is not a senior. She works at the center and cannot come to every class because of her duties, but comes most of the time. The day of the performance, she gets frustrated and says she does not want to perform. Another lady tells her to just follow me because I can stay with the music. So, the next run through, she follows me and afterwards gives me a hi 5. She’s in.

So, the luncheon begins and it is almost time for the band concert to start. I am expecting a band with trumpets and clarinets and flutes. I find out that the band is kazoos and percussion! When I reach the day when I can no longer play guitar, I hope I never succumb to playing the kazoo! My poor husband came to see the tap dance and had to sit through almost an hour of kazoo music and people singing with piano.

Well, our dance went ok at my end of the line, the other end got mixed up. The tap dancing is fun and good exercise, so I think I will stay with it at least a while longer. The ladies in the class are all very nice and I don’t want to abandon them. We’ll see what happens in the spring show.
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Old 12-14-2008, 02:40 PM #3
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Help Report on Carolyn

You all know Carolyn, one of our senior members, writer of cheerful--and illustrated!--posts of encouragement, keeper of a website of PD-related clippings at www.pdnewsclipper.com, a Pipeliner, website-maker, and doer of many chores to help others with PD.

Carolyn has, for the last couple of weeks, been in a hospital in Baltimore for depression, which so commonly accompanies PD. I'm not talking about down-in-the-dumps, I mean major clinical depression, the physical disease that requires medical attention.

My husband and I went to Baltimore (we live not far away) on Saturday two weeks ago and found Carolyn doing well, back on her PD meds, and aware that the program she's in is what she needed. We stopped by again yesterday (Saturday, Dec. 13) to find her looking even better, calm, and looking forward to going home next week.

I felt like I was visiting her on behalf of all her friends here, and was glad to be nearby so I could go. I thank my husband for chauffering me, as I now drive neither that far nor on such busy roads.

Cheers,

Jaye

Last edited by Jaye; 12-14-2008 at 02:41 PM. Reason: left out a phrase
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"Thanks for this!" says:
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Old 12-14-2008, 04:44 PM #4
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Default thank you, Jaye

For visiting Carolyn!

I'm so glad Carolyn is doing well and will be home soon.
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Old 12-14-2008, 08:45 PM #5
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Today we had our Christmas Concert at church and it went very well and was done very professionally. The combined music ministries presented a contemporary cantata. I played guitar for 3 songs and sang in the opening and the finale. The music director did a great job putting it together. I feel much better now after participating in a concert with kazoos on Friday.
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Old 12-17-2008, 04:54 PM #6
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Merry Christmas, everyone!!
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Old 12-17-2008, 11:05 PM #7
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Default Update

We went to Laura's first appointment at the Cleveland Clinic today..It lasted 6 hours, and it was positive..Nothing like the ER visits..She saw a DBS programer and two MDS's..While the programer was checking out the DBS, the same thing almost happened again..As she slowly increased the voltage on the left side, Laura felt a tingling in her left eye, so the programer stopped..This programer was careful, and another disaster was avoided..They havent looked at the MRI's of the DBS, but they seemed convinced all is not well with it..They are going to tinker with it again tomorrow

Laura was to show up this morning with off meds from midnight prior, so they did their examination, motor skills etc, and when they were done they gave her a Sinemet and a Mirapex and they left us in the examination room, and said they would be back in an hour to see the results..Well about 20 mins after they left we were talking, and joking around, and thr expression on Laura's face went blank, and her hands were up against her chest,and they started to shake rigorously..Then her whole body began to shake in a seizure like fashion..So I ran out of there and say the programer and told her what was happening, and she paged the Dr, and got someone to video this event, and they all witnessed what Laura has been talking about for a very long time, but no one had ever listened..This was the first time a Dr was there to see it...She shook for about 20 minutes, before she began to calm down..All of a sudden the rigidity in her legs loosened, and about 10 minutes later she was up and walking with a smile on her face..So the Sinemet does work, but there are side effects obviously..So..they switched the Sinemet for Stalevo..kept the Mirapex..changed the Benedryl to Artane..are weaning her off Klonopin and replacing it with some new drugs that treats anxiety, sleep depervation, and something else, to replace the Klonopin..cant remember the name..The staff were proffesional, cordial, informative, thourough, and they listened to every concern we shared..They answered questions, no matter whether they were relevant or not, and did not act like we were bothrering them like they did in the ER..They took the time to observe her, and filmed anything, and eveything they thought was of significance, like when she was on and off meds..We left the Clinic today with some hope..Finally!!..Thank You all for your thoughts and prayers..They were answered
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Old 12-18-2008, 12:04 AM #8
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Thumbs up What great news,Steve!

My faith in the medical profession (at least the Neuro-PD people at Cleveland Clinic) is restored.
Seriously, I am elated that Laura is finally getting top-notch medical attention. I know that you getting with Laura at this time in both of your lives is a God thing.
Keep us posted on future developments.
Robert
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