Top 10 list--what to do

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.

50 Replies

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  • 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 :)

  • 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!

  • 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.

  • I concur!

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

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

  • 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 :>

  • 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?

  • haha ha

  • 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.

  • "Stay Hydrated" should be somewhere on the list

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

  • 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.

  • Thanks.

  • 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.

  • 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.

  • Buy A touch light for the night stand.

  • 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!

  • Good advice. I forget to smile.

  • 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.

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

  • Love the list you have got it especially #9

  • Thanks. See my reply above about #9.

  • 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

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

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

  • 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

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

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

  • 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,

  • 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?

  • 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?

  • 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.

  • 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.

  • Welcome, I like #9 too! :-)

  • Thanks. See my reply above about #9.

  • Great list.

  • 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.

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

  • 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

  • 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

  • very good, thank you henderson-heywood.

  • Marmite is a quirky english spread for toast!

  • 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?

  • hell yes by the drum load

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

  • 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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