Parkinson's Disease Tulip


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Old 04-02-2014, 06:34 PM #1
HarryM HarryM is offline
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Default There's Still Hope !!!!!

When I have a day like today (no meds required & natural Dopamine production doing great) with no symptoms present & lots of energy, it suggests that PD might be stopable in its tracks if the key could be found as to how & why this interuption of the disease occurs.
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Old 04-02-2014, 08:04 PM #2
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Happy to hear you had a great day - hope it continues!

Quote:
Originally Posted by HarryM View Post
When I have a day like today (no meds required & natural Dopamine production doing great) with no symptoms present & lots of energy, it suggests that PD might be stopable in its tracks if the key could be found as to how & why this interuption of the disease occurs.
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Old 04-03-2014, 01:10 AM #3
St George 2013 St George 2013 is offline
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Default HarryM :)

Quote:
Originally Posted by HarryM View Post
When I have a day like today (no meds required & natural Dopamine production doing great) with no symptoms present & lots of energy, it suggests that PD might be stopable in its tracks if the key could be found as to how & why this interuption of the disease occurs.
Just had to pop in and say I'm so glad you had a good day....I had one too and was very thankful....I have small fiber neuropathy but totally understand how it feels to finally, finally get a good day.

Take care,

Debi from Georgia
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Old 04-03-2014, 02:40 AM #4
villiers villiers is offline
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Default Same here.....

your Post is very important
i am experiencing the same ......
i had 3 non-consecutive excellent-no meds needed-days like that last week,
i noticed that on those no-sinemet-days , i had waken up too early,and that i was feeling very hungry all day long for no reason...

My body can still function normally on certain days , maybe nothing was destroyed
the main problem is a weak communication between certain elements ,a mis-balance on different levels
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Old 04-03-2014, 10:40 AM #5
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Default Dum spiro spero

I think that anecdotal posts like these can give us great research leads, BUT ONLY if we have data.

What's your diagnosis? How long is it since diagnosis? What medications are you on? What are your tap test times? What symptoms have disappeared? What was different in the run-up to the good spell? Etc..

If you've not already done so, please add your data to PDMeasure at:
www.parkinsonsmeasurement.org

And, if you've already entered data on PDMeasure, please update your tap-test scores frequently.

I think it's especially important to report back when the good spell ends.

Here's an incomplete list of some of the things that could lead to a partial remission for several days:
- a self reinforcing therebo (feel good, improved dopamine, feel better etc..);
- the left over benefit of long acting drugs;
- misdiagnosis;
- seasonality, longer days, more light
- tyrosine hydroxylase deficiency reduced;
- end of constipation
etc..

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 04-03-2014, 04:04 PM #6
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Default Not so good of a day makes me more thankful for the good ones

I was diagnosed with PD in February '14. I've had symptoms for at least 3 years, I am now 46. Sinemet has been a miracle drug and has helped me tremendously!! This week has been an off week and I am not sure why, my body aches between doses. I am researching into what can help between doses, before the next dose is due and hoping it can be something natural.
God bless all who read this. You are all truly beautiful and I am praying for you. P.S. So grateful you are having good days.
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Old 04-03-2014, 09:20 PM #7
HarryM HarryM is offline
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Quote:
Originally Posted by villiers View Post
your Post is very important
i am experiencing the same ......
i had 3 non-consecutive excellent-no meds needed-days like that last week,
i noticed that on those no-sinemet-days , i had waken up too early,and that i was feeling very hungry all day long for no reason...

My body can still function normally on certain days , maybe nothing was destroyed
the main problem is a weak communication between certain elements ,a mis-balance on different levels
I too get 3-4 days total relief per month with out meds but am fortunate for the same thing happening every afternoon/evening at which time I pitch in with our household chores till I retire @ 12.30 am. No need for meds in the evening and virtually no PD symptoms till I rise in the am. Pretty strange this PD.
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Old 04-03-2014, 09:24 PM #8
HarryM HarryM is offline
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Quote:
Originally Posted by johnt View Post
I think that anecdotal posts like these can give us great research leads, BUT ONLY if we have data.

What's your diagnosis? How long is it since diagnosis? What medications are you on? What are your tap test times? What symptoms have disappeared? What was different in the run-up to the good spell? Etc..

If you've not already done so, please add your data to PDMeasure at:
www.parkinsonsmeasurement.org

And, if you've already entered data on PDMeasure, please update your tap-test scores frequently.

I think it's especially important to report back when the good spell ends.

Here's an incomplete list of some of the things that could lead to a partial remission for several days:
- a self reinforcing therebo (feel good, improved dopamine, feel better etc..);
- the left over benefit of long acting drugs;
- misdiagnosis;
- seasonality, longer days, more light
- tyrosine hydroxylase deficiency reduced;
- end of constipation
etc..

John
John you're right, More data.

Medical History

Born 1941
No Family history of N/Muscular disease
Exposed to liquid Hg & Carbontetrachloride
Concussion in vehicle accident 1959
Currently treated for Type 2 diabetes by insulins (novorapid & levemir as req)
Hypertension by Metoprolol 50mg & lisinopril 20 mg
Colesteral by Pravastatin 20 mg
Diaretic Spironolacton 12 mg
PD LevoCarb 100/25 mg 8 daily as req
PD LevoCarb CR 100/25 mg once daily @ bedtime

Diagnosed PD 2005 but was suspected by me in 1995. No tests to confirm PD but observation by Md, Chief of internal medicine, & Neurologist
No constipation ever
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Last edited by HarryM; 04-03-2014 at 10:30 PM.
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Old 04-04-2014, 02:30 AM #9
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Seewald,

Welcome to the forum.

You say that "Sinemet has been a wonder drug" for you, but you're having "an off week".

Here's some possible reasons for this:
- protein in the diet reduces the amount of levodopa that can get into the brain, timing is important;
- gastric emptying;
- constipation;
- dose too small - since your so newly diagnosed your doctors are probably slowly increasing the dose;
- doses too far apart;
- other illness, such as a cold;
- stress.

Exercise and socialise!

John
__________________
Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 04-04-2014, 09:05 PM #10
Seewald Seewald is offline
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Quote:
Originally Posted by johnt View Post
Seewald,

Welcome to the forum.

You say that "Sinemet has been a wonder drug" for you, but you're having "an off week".

Here's some possible reasons for this:
- protein in the diet reduces the amount of levodopa that can get into the brain, timing is important;
- gastric emptying;
- constipation;
- dose too small - since your so newly diagnosed your doctors are probably slowly increasing the dose;
- doses too far apart;
- other illness, such as a cold;
- stress.

Exercise and socialise!

John
Thanks for your advice John. The neurologist I am seeing doesn't want to up my sinemet dose until after I see the movement specialist on the 18th (presently on 25/100). I am watching out for protein intake near dosage and had a nutritious dinner/breakfast. Today was a better day. I had less body ache than yesterday .

Alison
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