Parkinson's Disease Tulip


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Old 08-21-2011, 11:22 AM #1
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Default A PD Emergency Checklist

In general, PD is a slow, relentless opponent. Things don't normally happen quickly. What can happen quickly, however, are interactions between PD symptoms and non-PD factors. These are often mistaken as part of the inevitable decline when, in reality, they are problems that can be corrected.

So I got to thinking that it might be handy to have a list of such things at hand, especially since it can be difficult to think clearly just when the need is greatest. I will start with a couple to show what I mean. If others add in maybe we can get it added as a sticky.

1- Dehydration can be a major problem. We don't drink enough, our bladders push us around, and we often sleep with our mouths open. We lose a lot of water in the best of circumstances. This also leads to constipation and we can take that as a reminder. Picture Muhammad Ali in happier times, "If you're constipated, you're dehydrated!" So, drink up and give your body what it needs.

2- And speaking of pushy bladders, develop a way to track how much water you lose during the night. A bedside urinal works well for a guy. You girls are on your own. This is important because the critical vitamins of the B-complex, as well as vitamin C, are water soluble and we depend on daily replenishment. The Bs are a particular problem because their shortage results in effects very much like PD symptoms. Weakness in the lower legs is a red flag here. It carries over to loss of minerals, too.

3- Hidden infections can quickly wipe you out. Although mainly of the urinary tract, those of teeth and gums can as well. It isn't necessarily the size of the infection, either. What happens is that the problem that you see actually serves as a trigger for a much more dangerous immune response beyond our BBB which attacks both body and mind. This is not necessarily going to be the first thing on the list at the ER, so brief your caregiver and your doc and put it on a wallet card as well.

What else do we need on here?
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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 08-22-2011, 09:49 AM #2
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Default 4. Perimenopause/menopause.

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What else do we need on here?
4. Menstruation/menopause. As if the cost and inconvenience of menstruation weren't enough for you pre-Parkinson's, menstruation (and the days leading up to it) exacerbates PD symptoms--including tremor, rigidity and dyskinesia--for most of us. Furthermore, symptoms of menopause and of Parkinson's overlap (changes in sexual desire and function, depression, fatigue, etc.), which can lead many of us to mistakenly assume our PD is worsening. Declining estrogen levels also may leave PWP more sensitive to pain than they were previously. Be sure to discuss these and related changes to your neurologist and your gynecologist.
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Old 08-22-2011, 10:10 AM #3
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Default 5. Medication side-effects

5. Medication side-effects. Most PWP on this site know the importance of reviewing and watching for listed side-effects when starting a new medication. But once we have acclimated to a drug and its benefits it is easy to get complacent and assume that an emerging symptom must be due to other factors. For example, one suddenly develops significant and wide-spread joint pain for the first time and assumes it's just one more unrelated trial. Then, for other reasons entirely, she discontinues her agonist and--much to her surprise--the joint pain disappears in two days. (Her sleep also doubles to a blissful 7 hours per night and her dreams return!) Periodically review the listed side-effects for every medication you are taking no matter how long it has been working for you; it's easy to remember the common and dramatic side-effects but easy to overlook the rare ones.

Last edited by rose of his heart; 08-22-2011 at 10:11 AM. Reason: typos
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Old 08-22-2011, 02:36 PM #4
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Default proactive help for UTI

I recently learned that cranberry juice can prevent UTI by preventing the bacteria from attaching to the urinary tract/bladder walls. You need the real stuff here, none of that sugary Ocean Spray or other watered down stuff..try Knudsen's pure cranberry extract (pricey, but lasts a long time-one tablespoon in a glass of water each day and you're good). Someone told me they take cranberry capsules and that works for them.

I can personally vouch for this: my mom only got a UTI when she wasn't on the daily cranberry elixir...seems like everytime she got a UTI, she had quit drinking her cranberry juice (the good kind, the Ocean Spray stuff did not prevent anything). And I can attest that a UTI can make an otherwise normal person appear to have sudden-onset raging dementia within a matter of days, so this is serious and scary.

Note: you can't take the cranberry juice after you already have the UTI because the bacteria burrow into the lining and hide...it's too late. It has to be taken preventatively. But that's OK, because cranberry extract, though tart, is delicious and can be added to smoothies, lemonade, just about anything. You just need a dab a day. Bonus: it's also wonderful for the kidneys.
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Old 08-30-2011, 03:19 AM #5
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Default 6. Sleep Deprivation

Sleep deprivation can be associated with PD medications, stress, time zone changes, aging, or other causes. Insufficient sleep, particularly over a prolonged period, can be lead to balance problems, slurred speech, incoherent thoughts, irritability and personality changes, sudden sleepiness/narcolepsy, weight loss, and other problems.
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Old 08-30-2011, 08:29 AM #6
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Default the silver lining!

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4. Menstruation/menopause. As if the cost and inconvenience of menstruation weren't enough for you pre-Parkinson's, menstruation (and the days leading up to it) exacerbates PD symptoms--including tremor, rigidity and dyskinesia--for most of us. Furthermore, symptoms of menopause and of Parkinson's overlap (changes in sexual desire and function, depression, fatigue, etc.), which can lead many of us to mistakenly assume our PD is worsening. Declining estrogen levels also may leave PWP more sensitive to pain than they were previously. Be sure to discuss these and related changes to your neurologist and your gynecologist.
yes....and the good news is that post menopause one may feel much better as if the brain just went thru a sort of "reboot"
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Old 08-31-2011, 08:39 AM #7
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Default Excellent idea!

Rick
I hope someone will compile these suggestions - what a priceless and practical idea!

I will come back and give more suggestionsn later - in a r ush right now, but here goes:

Medications - Sometimes when being prescribed another short-term medication (antibiotics, over-the-counter cold remedies, certain vitamins at a therapeutici level, etc.), it will seem to cancel out the efficacy of your PD meds. . Fear not, however; most PD managing medications will do what they are supposed to do once the new medication has cleared from your system. Drink plenty of water and take a stool softener or laxative to clear out the toxicity it has created.
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Old 09-01-2011, 02:25 AM #8
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Default More about UTI

Quote:
Originally Posted by lurkingforacure View Post
I recently learned that cranberry juice can prevent UTI by preventing the bacteria from attaching to the urinary tract/bladder walls. You need the real stuff here, none of that sugary Ocean Spray or other watered down stuff..try Knudsen's pure cranberry extract (pricey, but lasts a long time-one tablespoon in a glass of water each day and you're good). Someone told me they take cranberry capsules and that works for them.
....
Note: you can't take the cranberry juice after you already have the UTI because the bacteria burrow into the lining and hide...it's too late. It has to be taken preventatively. But that's OK, because cranberry extract, though tart, is delicious and can be added to smoothies, lemonade, just about anything. You just need a dab a day. Bonus: it's also wonderful for the kidneys.
Due to incontinence issues, I tend to get UTI's and can't take Pharma drugs -- doc says the antibiotics don't work well anyway. He directed me to get D-Mannose powder and take a teaspoon in a little water every 2 - 3 hrs. I got it at Amazon for less than a third of the health food store price, and it seems to work well for me. My kidneys quit hurting too. The D-Mannose apparently locks on to the bacteria somehow and carries it out in the urine.

I use the cranberry juice concentrate too, to prevent recurrence. I get it from Swanson very reasonably -- a pint is enough for a month.
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Old 09-01-2011, 09:30 AM #9
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Default Memory and reminders

Memory problems;

My biggest problem with this issue is looking at the clock(after that internal feeling is telling me the symptoms are coming back and FAST) and realizing I should have taken either my Sinemet or Requip a half hour ago or whenever I missed the dose. I need to stay on a very strict schedule with my meds to keep from "crashing" or falling back into a 2 to 3 hour set back.
I need an alarm to remind me of every single dose. Don't own an iPhone. Not in my budget right now. Hubby tried setting several alarms on my cell phone, but it would only allow 4 alarms in one day.

Anybody know of a reasonably priced watch that will let me set an alarm for every 2 hours or roughly 7 different alarm times each day(and not too loud)?

Otherwise, for memory problems, I have a book organizer/calendar I keep in my kitchen with a pencil attached to jot down reminders and appointments. Also, keep a small organizer in my purse.

What else can cause memory problems if it is not PD, besides lack of good sleep?
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Old 09-01-2011, 04:27 PM #10
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Default

Tonya-
I know that it is counter-intuitive and sounds like it would be more trouble, but you might try taking meds on an hourly schedule. Only works if you are taking no more than two or three types.

Youare never more than an hour fromthe last pill, so you are more likely to remember having taken it. Also have a strict rule that you won't take anything before the hour - even by 30 seconds. Helps with that "Did I? Or did I think I did?" If your digital watch is just rolling over, then you know yu did not.



QUOTE=TonyaV;801307]Memory problems;

My biggest problem with this issue is looking at the clock(after that internal feeling is telling me the symptoms are coming back and FAST) and realizing I should have taken either my Sinemet or Requip a half hour ago or whenever I missed the dose. I need to stay on a very strict schedule with my meds to keep from "crashing" or falling back into a 2 to 3 hour set back.
I need an alarm to remind me of every single dose. Don't own an iPhone. Not in my budget right now. Hubby tried setting several alarms on my cell phone, but it would only allow 4 alarms in one day.

Anybody know of a reasonably priced watch that will let me set an alarm for every 2 hours or roughly 7 different alarm times each day(and not too loud)?

Otherwise, for memory problems, I have a book organizer/calendar I keep in my kitchen with a pencil attached to jot down reminders and appointments. Also, keep a small organizer in my purse.

What else can cause memory problems if it is not PD, besides lack of good sleep?[/QUOTE]
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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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