Top 10 list--what to do: I just joined this... - Cure Parkinson's

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Top 10 list--what to do

maybeme profile image
50 Replies

I just joined this blog and in a short time of perusing it, I learned a lot. So far, here is my top 10 list about what to do. Please add items--or post your top 10 list.

1. Exercise regularly--yoga and big movements; aerobic exercise--walking or vigorous. [Less likely to fall off an exercise bike than to fall when walking/running.]

2. To save money, ask your doctor for generic versions of meds.

3. Have a regular sleep schedule. If you sleep more than 4 hours, you are doing well.

4. Take B vitamins, but not mega-doses. Ask your doctor to test for B12 deficiency--that requires getting shots.

5. Eat a healthy diet with a lot of greens and fruit (esp. prunes) for constipation.

6. Avoid stressful situations.

7. Try to resist impulses (like shopping and gambling).

8. Keep a sense of humor.

9. Get a T-shirt that says "I have Parkinson's. What's Your Excuse?"

10. Help each other out.

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maybeme
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Annie81963 profile image
Annie81963

11. Be thankful

12.Educate yourself

Hello maybeme,you covered the top 10,just wanted to add a few more!

I agree with you, I have learned alot from this blog,we all have alot in common and can help each other through our own experiences etc.

Welcome maybeme,its nice to meet you :)

maybeme profile image
maybeme in reply to Annie81963

Thanks. This is a great blog. Glad I found it. I used to take my Dad to support groups for his ALS. I don't go to a PD support group. But this blog is like one!

SaraRiggare profile image
SaraRiggare

Hi there, very nice list. However, I would not agree with you on number 2 on the list. There are scientific articles written about the problems with generic medication in Parkinson's, they have been shown to not always have the same effect as the brand name. I guess though, that if you've found a generic that works for you and you get the expected effect, you should stay with it.

DeParkiePoet profile image
DeParkiePoet in reply to SaraRiggare

I concur!

maybeme profile image
maybeme in reply to SaraRiggare

Yes, I do have some generics that work. But what generic meds don't work for you? Maybe I should switch.

fishinggirl profile image
fishinggirl in reply to maybeme

My insurance won't cover name brands, just generic if available

in reply to SaraRiggare

Hey there,

I was just going to comment on #2 on the list. I have recently found that generic (Ropinirol--I think) is nothing like the Real Requip XL. With all the Obama changes with the medical insurance well guess what --when my Dr. sent the Rx to Medco they automatically made it a generic. I was on it almost 8 months- and was dragging. Contacted medco and they changed it back to the reall stuff. OMG what a difference. I even had to cut the dosage back. Didn't mean to write a book just wanted to reply. Thanks :>

ronn profile image
ronn

"Stay Hydrated" should be somewhere on the list

tlongmire profile image
tlongmire in reply to ronn

Ronn, I have never drank a lot of water. Is there a particular reason PWPD need hydration? :-)

ronn profile image
ronn in reply to tlongmire

Tm, Besides causing tiredness and increasing other symtoms, I find that, for me, dehydration causes severe cramps in hands, feet and calves. Re-hydration and sometimes a bit of Potassium Gluconate make them go away. The potassium must be used sparingly as it can cause system imbalance.

tlongmire profile image
tlongmire in reply to ronn

Thanks.

maybeme profile image
maybeme in reply to ronn

Thanks. Great addition. I do find I need to drink a lot of fluids, otherwise I'm really dragged out and exhausted. It may be the meds. I always have dry mouth from the meds.

CJ49 profile image
CJ49 in reply to maybeme

Drinking plenty of water is also necessary to "flush" the meds through your system.....otherwise they can cause "infections" in the "bladder."...I recently experienced this during my last GP visit.

Karen3 profile image
Karen3

Buy A touch light for the night stand.

bawford profile image
bawford in reply to Karen3

A great idea. Also those little stick on lights that hardware stores sell that you just touch are great for at the corners of rooms and while traveling.

Keep Smiling!

maybeme profile image
maybeme in reply to

Good advice. I forget to smile.

MagicMax profile image
MagicMax

Add join a local Special Interest Group (SIG) for Parkinson's to share who are good and who are no so good neurologists in your area.

maybeme profile image
maybeme in reply to MagicMax

I don't know about these SIGs. How do i find them? Do you have a link?

grammieof3 profile image
grammieof3

Love the list you have got it especially #9

maybeme profile image
maybeme in reply to grammieof3

Thanks. See my reply above about #9.

PatV profile image
PatV

13. Sing or chant or read out loud to keep your voice working.

14. Smile at strangers and likely they will hold the door for you.

(I can't do number 9. I have IBS with constipation and am in search of non irritating alternatives) :P

maybeme profile image
maybeme in reply to PatV

Thanks! I wis I could sing-- can't carry a tune. But I love reading aloud.

DeParkiePoet profile image
DeParkiePoet in reply to maybeme

So sing offkey, who cares if you sound terrible, I can't hear you from my house!!!

bawford profile image
bawford in reply to DeParkiePoet

good reply, I can't either. Does this mean you can't hear me learning the piano too? Hope so because I am doing a lot of 'off key'. . hahah

judam9 profile image
judam9

prunes always work for me, 7 or 8 at night , what a delight!

maybeme profile image
maybeme in reply to judam9

You eat 7 or 8 prunes at a time? Or you eat them at 7 or 8 o'clock?

judam9 profile image
judam9 in reply to maybeme

just after supper, i have dessert. 7 or 8 prunes. and it works really well.

it could be anytime, but i felt that after i eat for the day is a good time . but i do eat them all at one time. [not a mouth full] just one at a time,

Pete-1 profile image
Pete-1 in reply to judam9

I have no idea how many you would have to eat but I once heard that it is entirely possible to eat enough prunes to get a lethal dose of arsenic. Probably an urban myth?

judam9 profile image
judam9 in reply to Pete-1

my husband eats more prunes then i do, even though he doesn't need them ,

but he's still above the grass. could be a myth. is there arsenic in prunes pete?

Pete-1 profile image
Pete-1 in reply to judam9

Looked in wikipdia and found no mention of arsenic but did find the following

"Dried prunes have been found to contain high doses of a chemical called acrylamide which is a known neurotoxin and a carcinogen".

Might not be ideal for PWP.

judam9 profile image
judam9 in reply to Pete-1

is there an alternative pete? talk about being between a rock and a hard place. i suppose apricots work to , but very expensive. and they probably have the same thing in them.

well everyone has to die of something.

tlongmire profile image
tlongmire

Welcome, I like #9 too! :-)

maybeme profile image
maybeme in reply to tlongmire

Thanks. See my reply above about #9.

Yogibear profile image
Yogibear

Great list.

maybeme profile image
maybeme

I found that one in someone's post and liked to too. So I used it. I'm going to get a t shirt made. I'm trying to think of other slogans that might be good. Ideas:

PWPD Unite.

No, I'm not drunk. I have PD.

Be nice to me--Or I"ll bonk you with my cane

Is there a fly in here?

DeParkiePoet profile image
DeParkiePoet in reply to maybeme

haha ha

Norma55 profile image
Norma55 in reply to maybeme

My daughter has one that "My Mom makes Parkinson's Look Good" My gave me one that says " I make Parkinson's Look Good". I am a little shy towear mine but my daughter wears her T-shirt everywhere.

CJ49 profile image
CJ49

Another "good one".....Read all potential "side effects" listed on the prescription literature, (that is included with the medications), when you pick them up at the pharmacy.....To often, if a person has more than one "issue", (like me), they tend to "blame" Parkinson's for all the negative effects going on.....If we keep informed on the effects of "all" medications taken, it would explain many "reactions."

I used to blame PD for all my skin rashes and "lack of voice", until I read and became informed on the real "culprits".

Hey there,

I like the list--I hope you don't mind if I interject on a few. Exercise is great if I'm having a good day. Yoga and stretching works best for me. I have a hard time walking so I invested in an eliptical , little weird at first. Balance issue. Now I just hang on and Go. Balance improved and Im walking better too.

The generic meds don't always work as well. I had an issue with Requip xl. on the generic (Ropinirole) I had to take 16 to 20mg a day. with horrible stomach issues. When put back on the real Requip xl- I had to back off the dosage. I take 12mg a day- still have stomach issues somedays. I just take a digestion aid and Im good. Also-most people with Pd are low in B vitamins, supplements are good to take. Don't forget about the Brain Food-- CoQ10 (very important), Omega 3s, fish oil are also very important. Again-- Good List- Keep blogging.

DeParkiePoet profile image
DeParkiePoet in reply to

Very good advice Grappers>... I do QiGong when I can and that helps a lot to overcome the WONKINESS. Hang in and hang on!

Norma55 profile image
Norma55 in reply to DeParkiePoet

What is "wonkiness?

A little late but here's my list

1. Don't mourn the person you used to be

2. Know who you really are and call on your strengths

3. Accept you are a patient and that you can be vulnerable

4. Don't sit on your laptop all day hoping for inspiration, go out and get some

5. Use this life change to change all the things about your life you simply 'put up with'

6. Learn that putting yourself first so you can be your best is selfless

7. Keep mentally active, find challenge, set goals

8. Have a plan that you can deploy if you feel a slide into darkness

9. If you find yourself talking, walking, reading, seeing everything PD time to redress the balance

10. Be supportive and kind of those around you

11. Kick ass at everything you do, give it all you've got

12. Be tolerant of marmite loving, drum banging, wannabe aging disco divas who bear the initials CHH

maybeme profile image
maybeme in reply to

Fabulous! ( not sure about the marmots though -- did you mean the rodents or the earthenware cooking container?)

And I would add, for me:

13. Retire from your job if it gets in the way of taking care of yourself

14. Get back to your pre-PD exercise frequency/intensity

15. Stop playing those damn computer games--they're a big time sink

16. Finish (or write) your memoir--it's a creative and energizing use of time

17. Stop talking aloud to yourself

18. Paint

judam9 profile image
judam9 in reply to

very good, thank you henderson-heywood.

Marmite is a quirky english spread for toast!

Pete-1 profile image
Pete-1 in reply to

Also very good as a sandwich made with white bread and with a glass of milk to wash it down. Good after-beer fodder.

Do you mean to say that Marmite is not available in Scotland?

in reply to Pete-1

hell yes by the drum load

bawford profile image
bawford

I love this blog. Everyone has such fabulous comments and suggestions.

Koko profile image
Koko

A few more:

- keep moving

- take your meds.

- for every negative thing you say, turn around and say two positive things

- read one new joke each day and share it with two friends.

- find a quiet place and do some breathing exercises empty your mind and see what happens.Where do your thoughts take you.

- be of value to someone else, help them with something you are able to do

- believe that PD is not a punishment but a challenge and your job is to see it through, for many eyes are watching and you have a leadership role. Many are called but few are chosen.

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