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Parkinson's Awareness Month

fundraising PD awareness Parkinsons Awareness Month

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#1 Wondermom

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Posted 02 April 2013 - 02:03 AM

April is Parkinson's Awareness Month. Here's some things you can do to make a difference.
1. Contact your local Parkinson’s Association to find out about local events.
2. If you’re able to, attend the Parkinson’s Unity Walk in NYC on April 27. I went 8 years ago, my parents are going this year for their 4th time. Team Tutu Train has raised almost $11,000 this year!
3. Email your friends and family. Tell them you have PD and ask for their help in finding a cure by donating to one of the following organizations;

a. The Michael J. Fox Foundation

b. The Parkinson’s Association

c. The Parkinson’s Unity Walk

d. The National Parkinson’s Foundation

e. The Parkinson’s Institute

f. The Davis Phinney Foundation (my favorite)

g. Whatever PD group you support

h. Need help writing the letter? Let me know. I’ll gladly help you.

4. Change your Facebook picture to the PD Awareness red tulip.
5. Add Parkinson’s Awareness Month and logo to your email signature. Personal and work, if you can.
6. Ask your employer if they do donation matching. If so, make a donation to one of the organizations listed above..
7. Ask your employer if you can organize a fundraiser with your coworkers.
8. Organize a fundraiser anyways. https://www.michaelj...fundraiser.html
9. Ask your kid’s sports coach if the team can wear red ribbons, socks, headband or sweatbands for PD awareness. My son’s baseball coach put PD Awareness stickers on all the boys’ helmets. How cool is that?
10. Call your local senators and congressmen and/or congresswomen. Tell them you have PD and you vote! Ask them to support research at NIH and other programs.
11. As a Young Onset Parkie, you have a story. Call your local news station and pitch them the story.
12. Do something for yourself. If you are not getting the support you need from your neurologist, find a new one. Be your own advocate and demand the care you deserve.
13. Join a YOPD group in your area. If there isn't one; start one!
14. Join a research study. Where? Check out https://foxtrialfind...ichaeljfox.org/
15. Follow YumaBev’s blog, http://parkinsonshumor.blogspot.com/ I promise you’ll laugh.
16. Spit. Go to www.23andme.com/PD and get genetic testing. It’s free for Parkies.
17. Get informed. Add google alerts on PD. Information is power.

Together we can all make a difference. Let’s work to find a cure!

#2 Sunnydaydreameer

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Posted 02 April 2013 - 05:35 AM

How AWESOME!! Thank you sooo much for the information.. There is not a YOPD group in Northern Kentucky, and I would like to find a way to be part.. Im 39 and I am currently in a fight with the YOPD and been in the fight for over a few years now..

Thank you soooooo much for the information!!

#3 jb49

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Posted 02 April 2013 - 07:47 AM

Good morning and welcome :razz: daydreamer

Hey WonderMom.
great list. Thanks for taking the time to write it down.

I have met and listened to YumaBev's songs in a Parkinson's Chatroom. She is a great personality!

jb
Don't be hard on yourself, try your best and be strong!

#4 Beau's Mom

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Posted 02 April 2013 - 10:37 AM

Like, Like, Like, ditto, ditto, ditto!

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#5 Sean

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Posted 02 April 2013 - 10:53 AM

April is Parkinson's Awareness Month. Here's some things you can do to make a difference.
1. Contact your local Parkinson’s Association to find out about local events.
2. If you’re able to, attend the Parkinson’s Unity Walk in NYC on April 27. I went 8 years ago, my parents are going this year for their 4th time. Team Tutu Train has raised almost $11,000 this year!
3. Email your friends and family. Tell them you have PD and ask for their help in finding a cure by donating to one of the following organizations;

a. The Michael J. Fox Foundation

b. The Parkinson’s Association

c. The Parkinson’s Unity Walk

d. The National Parkinson’s Foundation

e. The Parkinson’s Institute

f. The Davis Phinney Foundation (my favorite)

g. Whatever PD group you support

h. Need help writing the letter? Let me know. I’ll gladly help you.

4. Change your Facebook picture to the PD Awareness red tulip.
5. Add Parkinson’s Awareness Month and logo to your email signature. Personal and work, if you can.
6. Ask your employer if they do donation matching. If so, make a donation to one of the organizations listed above..
7. Ask your employer if you can organize a fundraiser with your coworkers.
8. Organize a fundraiser anyways. https://www.michaelj...fundraiser.html
9. Ask your kid’s sports coach if the team can wear red ribbons, socks, headband or sweatbands for PD awareness. My son’s baseball coach put PD Awareness stickers on all the boys’ helmets. How cool is that?
10. Call your local senators and congressmen and/or congresswomen. Tell them you have PD and you vote! Ask them to support research at NIH and other programs.
11. As a Young Onset Parkie, you have a story. Call your local news station and pitch them the story.
12. Do something for yourself. If you are not getting the support you need from your neurologist, find a new one. Be your own advocate and demand the care you deserve.
13. Join a YOPD group in your area. If there isn't one; start one!
14. Join a research study. Where? Check out https://foxtrialfind...ichaeljfox.org/
15. Follow YumaBev’s blog, http://parkinsonshumor.blogspot.com/ I promise you’ll laugh.
16. Spit. Go to www.23andme.com/PD and get genetic testing. It’s free for Parkies.
17. Get informed. Add google alerts on PD. Information is power.

Together we can all make a difference. Let’s work to find a cure!

Good Morning Wondermom...such a great moniker!
Thank you for this wonderful information. I hope to utilize many of your suggestions and hope we can raise awareness of PD and, in particular, YOPD.
You are most generous in sharing and it's much appreciated.
Take care,
Sean





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