YumaBev becomes the Top Banana

For the last couple of years, I have been attending our local Parkinson's Support Group meeting. I am the youngest member and the silliest one, too. In January, our current leader, Greg, decided to step down and asked me to take over the group. I said yes and within an hour or so, all the official paperwork was done. So, now I was the Top Banana and even had the costume to prove it.

February was my first official meeting and mostly I just gave people information about upcoming seminars, what to do if you have to go to the hospital, the dreaded "exercise is best" talk and threw in some laughs as well. 

NPF's Aware in Care Hospital Kit

At the March meeting, I played my before and after DBS videos and we all sang along to my song parody called Winter Wondering. 

I try to keep the meetings upbeat and informative; this time handing out flyers for a little known benefit that might help some of our Parkies who are Veterans, and another about a USB Medical Bracelet from the Muhammad Ali Parkinson Center. 

I'm hoping to get the Mayor of Yuma to come to our April meeting and personally bring the Parkinson's Awareness Month Proclamation. And after that, who knows. Most of our members will be heading back north soon, but the rest of us will find something to do over the long hot Summer. 

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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Dr. Z and Me

I went to see Dr. Z, my Neurologist, on Wednesday, April 18, 2012.  Going to see Dr. Z is like visiting a friend, I have been seeing him every 2 - 3 months since August of 2007, when he first diagnosed me with Parkinson's Disease.  


My visits always start the same, Bonnie or Malinda sign me in, then Perla shows us (my Wonderful Hubby always comes along) to an exam room and in few minutes, Dr. Z comes in, smiles a big smile, and says: Hello, Mrs. Ribaudo, Mr. Ribaudo, how are you today? He shakes both our hands and sits down.


Part one of my visit was as his patient.  He asked me how I was doing with the dosing changes we made last visit (3 months ago).  I told him I was having bad left foot cramps (my lesser affected side) everyday around noon (during peak on time) and that I had tried cutting back my Stalevo 100's to 4 times a day (after Charting my symptoms) instead of 5, to see if it made a difference.  The foot cramps had disappeared and the slight increase in off time was acceptable to me, so he wrote down the new dosing times and said okay.


We then discussed the possibility of replacing a couple of the Stalevo's with plain Sinemet (I am concerned about the potential negative side effects of the higher doses of entacapone, the extra ingredient in Stalevo). Dr Z said I could try it, but do it slowly and carefully chart my symptoms.  He said I might need to take a half pill in between doses and wrote me a prescription.  I asked about reducing the Requip (also due to potential side effects), but he suggested just one change at a time.  I am to report back in 2 months, sooner if problems occur.


Part two of my visit was as a Parkinson's Advocate.  I showed him the Aware in Care Hospital Kit and told him to expect patients to be bringing them in.  He asked if he could order some to hand out and I said yes and gave him the info.  I told him the Neupro Patch had received FDA approval, again. I showed him the Proclamation from the Mayor and my two stories featured on the Michael J Fox Foundation blog. I then asked him if I could take a picture of him for this story.  He seemed embarrassed, but said yes. 


He then gave me my usual hug (yes, we end every visit with a big hug), shook hands with my Wonderful Husband and went off to take care of another patient. Now you all know why I love my Dr Z.  

Bev and Dr Zonis

Dr. Julio Zonis, his beautiful wife Perla (who is his office manager) and Malinda and Bonnie (the girls who do the rest) always take excellent care of me!


PS  Every Parkie is different and finding the right combination of medicines, doses and timing takes patience.  Charting has really helped me and my Doctor, however, what works for me will probably not work for anyone else and what works for me this week may not work next month. Discuss any medicine changes with your Doctor.


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Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon or your favorite online book seller. Thank you and have a Happy Parkie Day!

Parkinson's Disease Aware In Care Hospital kit

When I first heard about the Parkinson Foundation's Aware In Care kit, designed to help Parkinson's Disease patients get the best possible care when hospitalized, I ordered one right away, then I shared the ordering information on my Facebook and Twitter pages.

My kit came a few weeks ago.  I looked it over and decided it was important, so I showed it to my neighbor, Carole, who volunteers at our local hospital as a patient advocate.  She ordered one and plans to talk about the kit at the next Hospital Board meeting.  I told all the people at my local Parkinson's Support Group about the kit and helped 18 of them order kits for themselves.  It's a good thing my neighbor is warning the Hospital because I am certain these kits will be appearing with Parkies coming in for treatment.

My Aware in Care kit sits near my coffee cup, so I always know where it is

The kit is small, but packed with useful information:

Contents of kit

1. The Hospital Action Plan brochure: It has great advice about planning ahead for your next hospital stay, emergency or planned.  Hint:  Make sure that everyone knows EXACTLY WHERE the nearest hospital or care center is located, before an emergency comes up because getting lost on your way isn't humorous.  Make sure you can FIND your kit in an emergency, I keep mine next to my coffee cup, because I ALWAYS know where my coffee cup is.
2. The Medical Alert Card: This should be filled out and carried in your wallet at all times.  Hint: Have someone who can write legibly fill it out for you.  It won't help you if the EMT's can't read your scribbled writing.  
3.  The Parkinson's Disease Medical Alert Bracelet:  This gave me some trouble.  I have difficulty with clasps, so I could NOT put it on by myself.  My Wonderful Husband (a former jeweler) solved the problem by shortening the links and making it just loose enough that I can slide it on without unhooking it.  The front of it says to look for the wallet card and

Bracelet slides on and off

the back of it has a 1-800 number for PD info.
4. Medication Form Pad:  This is a whole pad of forms to list your medications and exactly what time you take them, so update it each time you have ANY changes. Hint: It might be a good idea to have someone else fill this form out, too.  I have one in my kit and copies in the glove boxes of both family cars, just in case I don't have the kit with me if an emergency comes up.
5. Magnet:  Use this magnet, in the hospital, to display a copy of your Medication Form.  It will stick right to the end of the bed where your chart hangs.
6. Parkinson's Disease Fact Sheet:  A simple explanation about Parkinson's and how IMPORTANT it is for us to get the right medications at the right times during our hospital stay, as well as warnings of medications that can have potentially bad side effects.  Hint:  I made copies of mine and gave one to each of my Doctor's to put in my chart and I also put a copy in each car's glove box.
7. The "I have Parkinson's" Reminders Slips are to be given to EVERY person who will be taking care of you in the hospital.
8. A Thank You Card: To give to the staff member who did their best to give you high quality care. Hint: the one you'd give an A+ to.  (Not the prettiest or handsomest one, give them your phone number instead, hee hee)


Hopefully, I won't ever need to use my kit, but just in case, I think I'll be able to squeeze Parky Penguin and my pajamas in the kit along with a toothbrush and comb.  

Aware kit, Parky Penguin and my pajamas

And just in case the nurses are a bit grumpy, my jammies ought to give them a smile, at least.  Don't you agree?  

Follow this link to order yours today. Sorry, but it can only be sent to USA addresses. Parkinson Foundation's Aware In Care Kit  I almost forgot the most important thing, these kits are FREE, yes FREE, so order yours right now.

Attn Non USA Readers: If you go to the website (click colored links above) and click Kit Contents, most of the forms are down-loadable, so you can print out and make your own kit. 


Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!