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A great day!


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#1 Delta

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Posted 10 April 2013 - 02:54 PM

My MDS adjusted my medicine about 4 weeks ago. He added a dose of sinemet cr in the morning and at bedtime. The goal was to decrease off time and level out my symptoms.

It's really working! Today is the first day in years that I feel PD free. I walked/jogged 3 miles this morning. I mowed the lawn and put fertilizer down. I also went to the mall and was able to WALK

I've found I need to take each dose of medicine within 15 minutes of scheduled time. And when I do things are good. It took 2 years to get my medicine adjusted to this point and I hope it's real not just 1 good day.

May we all have good days!!

Delta

#2 Luthersfaith

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Posted 10 April 2013 - 02:59 PM

So happy for you... may there be many more days of freedom for you.
Proof there is hope for the rest of us.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#3 Drummergirl

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Posted 10 April 2013 - 04:42 PM

Glad to hear this! May you have many more good days!
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l =600 mg,
0.5 Azilect 1 daily Comtan 200mg 2 day, 0.5 mg Clonazepam 1 daily.

#4 noah

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Posted 10 April 2013 - 06:16 PM

congratulations

#5 Island Woman

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Posted 10 April 2013 - 07:27 PM

Delta great news...I'm starting sinemet cr tomorrow...your post gave me hope...want to get out in the garden.


Patricia

#6 KimAgain

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Posted 12 April 2013 - 08:52 PM

Delighted for you Delta, delighted!

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#7 Vanillab1027

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Posted 13 April 2013 - 07:42 AM

Awesome news! Congratulations and enjoy!

#8 KimAgain

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Posted 13 April 2013 - 05:49 PM

Patricia... three days in, how is it going dear :?:

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#9 Island Woman

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Posted 13 April 2013 - 06:16 PM

3 days in and no big miracle....think I felt better before...know it takes time for the body to adjust but thanks for asking Kim


Patricia

#10 KimAgain

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Posted 13 April 2013 - 06:37 PM

I'm sorry to hear that... perhaps time will be kind. I am hoping for you.
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#11 Delta

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Posted 13 April 2013 - 11:02 PM

Patricia. - I felt the difference at 4 weeks. I have had much more on time but since my post I have had some off time especially after 8 pm. And I still don't sleep more than 3 hours at a time
But for the first time since I was diagnosed in jan 2009, I "forgot" I had PD. my symptoms are for the most part under control and PD was not my only thought.
Delta

#12 KimAgain

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Posted 14 April 2013 - 02:37 AM

3:04 a.m. Sheesh, my neuro tells me this business of sleeping only three hours at a time is "REM Sleep Disturbance." More like, REM Sleep TORTURE!! (Especially for the poor folks on this Forum who wind up seeing my face at all hours of the day and night!)

Patricia, we need to sync our sleep times so we can have tea! <sip sip... I'll pour one for you if you're up?>

This night, a good deal of my REMSD is, I'm afraid, exacerbated by my husband's snoring! Outside of that, I have about six different types of anti-depressants that my doc has prescribed for me in an effort to give me a full night of sleep--all to no avail. I've also tried Ambien and Lunesta--the latter of which, aside from causing "nocturnal wanderings," gave me a foul, foul taste in my mouth--and, what did the former do, you might ask? Well...

It was mid summer, as I recall. I usually forgot what I got up to on Ambien, unless something triggered a memory and, this particular morning, it was the strawberry fingerprints all around the light switch that triggered a vague recollection of something I'd done the night before. I remember my husband walking into the kitchen right behind me... He took in the scene a LOT quicker than I had (since my brain was still befuddled by the Ambien) and I remember his reaction was one of sheer disbelief, "good grief, honey," he whispered, "what have you been up to?!"

I'd been making "Midnight Strawberry Smoothies," apparently. The kitchen counters were littered with strawberry parts, blender parts, banana's, and heaven knows what else--no body parts, thank goodness, since the blender was my "weapon" of choice that night--but, when I reported my sleep blending to my doctor, she was so horrified her facial expression was priceless. She feared I was just a hop, skip, and a key turn away from driving my car without realizing it! That was the end, then, of my brief trial of Ambien.

Oddly enough, the Ambien actually hadn't really worked. I still got out of bed every three hours or so, I just rarely had memory of doing so. I have yet to try a sleep med that can keep me down for more than four hours at a time.

3:35: I'm going to try for another three (or, if I'm lucky, 4!)
Later,
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#13 Delta

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Posted 14 April 2013 - 03:58 AM

Kim - my MDS has so far refused to give me sleep aids. He believes that when we get my PD meds correct I will be able to sleep normally.

On an aside note a different doctor prescribed ambien for me about 5 years ago. I got the generic version per my insurance plan. Apparently a known side effect of the GENERIC version is nightmares. And let me tell you I had some really terrifying ones. I for one will never take generic ambien again.

#14 Island Woman

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Posted 14 April 2013 - 08:19 AM

Kim usually awake at 3AM for some OJ but happy to meet you for tea.

Here's an interesting sleep situation I'll never understand. Last weekend while visiting a friend...each night I slept 9 hrs. straight for 4 nights....came home back to 3 hrs..... wake up... walk around and back for 3 more....strange. While away even went to bed earlier then usual...the only thing I can pin down is extra wine and didn't turn computer on after dinner. Read some where never use the computer before going to bed but I usually do. Another mystery.....

Patricia

#15 LarryH0123

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Posted 14 April 2013 - 09:40 AM

Kim,

Glad you were able to survive your nocturnal blending without incident. Reading the posts of so many others who get only one to two hours per night I am grateful for 5 or 6 that I am getting. I am waking up every day at 2:30 or 3:00 a.m. and going to sleep at 8 or 9 most nights (some nights up til 10 but not often). I am still on Azilect 1 mg. and Neupro patch (Rotigotine) 8 mg. daily. These are the only two pd meds I'm taking. I wonder if the Levadopa affects the sleeping or is it the pd?

#16 KimAgain

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Posted 14 April 2013 - 12:14 PM

Kim - my MDS has so far refused to give me sleep aids. He believes that when we get my PD meds correct I will be able to sleep normally.


I'm not sure how I feel about that! Sounds to me like your doc is saying, "suffer until I figure this thing out!" Let me see him function on two or three hours sleep for months at a time--see how quickly he whips out his prescription pad then!


Kim usually awake at 3AM for some OJ but happy to meet you for tea.

Here's an interesting sleep situation I'll never understand. Last weekend while visiting a friend...each night I slept 9 hrs. straight for 4 nights....came home back to 3 hrs..... wake up... walk around and back for 3 more....strange. While away even went to bed earlier then usual...the only thing I can pin down is extra wine and didn't turn computer on after dinner. Read some where never use the computer before going to bed but I usually do. Another mystery.....

Patricia


I have mysterious PD occurrences myself... For instance, usually when my husband is in town, I am able to get back to sleep when my three-hour wakeup hits--it may be because I'm trying so hard not to disturb him that I stay in bed longer and ultimately fall back to sleep. Whereas, when I am alone, I find myself having to move around. The last couple of nights have been the exception to that rule--with the pollen count up in the 3,000 range (100 is considered HIGH, 3,000 is off the charts), my dearest has been snoring like I'd imagine a beached manatee might. We both feel lousy and, despite allergy meds and nose stickies for him and earplugs for me, the snoring goes on... so, I'm thinking it may be a while before we right this particular ship.


Kim,

Glad you were able to survive your nocturnal blending without incident. Reading the posts of so many others who get only one to two hours per night I am grateful for 5 or 6 that I am getting. I am waking up every day at 2:30 or 3:00 a.m. and going to sleep at 8 or 9 most nights (some nights up til 10 but not often). I am still on Azilect 1 mg. and Neupro patch (Rotigotine) 8 mg. daily. These are the only two pd meds I'm taking. I wonder if the Levadopa affects the sleeping or is it the pd?


My neuro tells me that, at the three hour sleep point, REM sleep usually kicks in--but, that is only a guideline and we are all (yup, you guessed it!) different. So, the way it was explained to me... if you are waking up at a set interval after sleeping, it's most likely when you have entered your personal REM cycle. This, at least, is PD not meds. I don't know if meds do it too.

Edited by KimAgain, 14 April 2013 - 12:16 PM.

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#17 newbob10

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Posted 14 April 2013 - 12:45 PM

Delta, great news. I hope you're continuing to have great days more than not. Patricia, I hope you start getting results sooner than later too.

Kim, have you been on clonazipam? I used it for a while and it helped a lot with sleep. I don't know about how it fits with your meds but thought I'd throw it out there. Good luck.
Bob

#18 woodbee

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Posted 16 April 2013 - 08:03 PM

Delta...I'm happy for you. Hope the good days just keep on coming.

Eileen

#19 christie

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Posted 17 April 2013 - 02:58 AM

Happy for you Delta !
I wish everyone great days and positive thinking! Maybe we can't live "normally" with PD but can we live happily? i suppose we can !

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#20 Delta

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Posted 30 April 2013 - 11:57 AM

The addition of sinemet cr in the morning and at bedtime has made a significant difference in the control of my symptoms. I'm having many more times when I 'forget' I have PD. it's taken 2.5 years to get my meds adjusted to this point.

I'm a big proponent of exercise and work out 5-6 days per week. What really sucks now is I have shin splints. It hurts to walk, run and play tennis. I've not seen the doctor, but the trainer at my gym showed me how to stretch and told me to ice after every workout. I really don't need this now.




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