Red spots, Barnacles and getting older

I went to see Dr L, my dermatologist, in April 2012. Since either having Parkinson's Disease or the medicines I take for Parkinson's Disease can increase my risk for melanoma (the scientists aren't sure which), I get a complete skin check every 6 months.  


This visit had me worried.  I had basal cell and squamous cell cancers cut off my nose back in 2009, so I pay attention to my skin.  Several weeks ago, I noticed a red spot on my nose, a black spot on my neck and a mole on my arm seemed to have darkened.

red spot on nose

black spot on neck

mole changed color

Since my regular appointment was soon, I waited.  I was led into an exam room, given the obligatory "one size fits none" paper gown and told to undress. (Why is it always so cold in Doctor's offices?) Dr L came in with a huge orthopedic boot on her foot. I asked what happened. She said "I broke 3 toes and am not saying how", then laughed.  Dr L has a great sense of humor, she likes to joke around and, why not?  We're sitting there naked in flimsy paper gowns, so she has a captive audience!


She asked about my Parkinson's and I told her my story about her (All the skinny on this Parkie) was a fave of my readers and she said " Oh my, WHAT did you say about me?" and laughed again.  We made small talk as she scanned every inch of me, paying particular attention to my nose.
  

Exam room items

I asked, meekly, about the "spots".  She said the one on my nose was vascular (probably blowing your nose too much from allergies), she said the one on my arm was just "your skin getting old and sun damage" and she called the one on my neck a keratosis or barnacle. 


She said everything was fine, she'd see me in 6 months and disappeared.  I got dressed and found myself singing "Barnacle Bill the Sailor Man" the rest of the day!  I was a very Happy Parky, even though she said I was old and had barnacles like an old ship! But my nose was spared the scalpel once again. Whew!


PS Mention of melanoma risk is in the fine print of Stalevo, Sinemet, Requip and Mirapex. All of which I have taken during my treatment of Parkinson's.


Clicking on anything COLORED in a story will open another window and take you to that link.

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 Parky Day!

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.


Clicking on anything COLORED in a story will open another window and take you to that link.

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!

I was Honored

My Wonderful Husband and 3 of my online Parkie friends nominated me for Parkinson's Disease Superstar.  I was so honored to know that I made a difference in their lives. Thank you and a big hug from me.


Here is a link to their nomination writings:


Parkinson's Superstars nomination: Bev-Ribaudo

Parkinson's Disease and My Sweet Tooth

I read a Tweet from the Michael J Fox Foundation on Friday, April 6, 2012.  It said:

Interesting associations found w/ #parkinsons from @23andme, "sweet tooth," loss of smell http://bit.ly/HjFovS cc: @YumaBev  

Since they had cc'd it to my attention, I read the article right then.  

Guess what?

It turns out the folks at 23andme (a genetic testing company looking for bio-markers for Parkinson's Disease) found some surprising associations. One of them was a tendency to develop a sweet tooth after Parkinson's Disease diagnosis.  

Angel food with strawberries

The story piqued my interest and I began thinking about my own sweet tooth. 

Lemon meringue pies

I was a strange child.  I did not like sweets.  My parents and my siblings all loved sweets. I used to joke that by the time I was born, all the sweet tooth genes were gone.  When we bounded in the door after school, the others grabbed a handful of cookies and I grabbed a chunk of cheese.  This made my birthday celebrations tricky for my Mother, who was an exceptional baker.  I did not like cake or pie and I really didn't even care for ice cream, so Mom would improvise. Candles in cubes of cheese, in slices of apple, sticking out of the bowl of mashed potatoes or my favorite memory: She made a fancy jello ring, only it didn't quite set firm enough and the candles slowly fell over the sides on the way to the table. 

My lack of interest in sweets continued into adulthood, I only ate a bite or two of my own wedding cake and I still prefer cheese.  

Our wedding cake

In the last couple of years, things have changed.  I find myself coming back from the buffet with desserts on my plate instead of fruit and salad.  Unless it's chocolate, which I still don't like, I will eat birthday cake with ice cream at parties.  I've begun to eagerly look forward to my neighbors making holiday cookies and my walking buddy Freida, hasn't made one dessert yet that I didn't want a second piece.  

Pineapple upside down cake

What is going on with me?  
Has my sweet tooth gene finally awakened? 

Bev and a cake

Apparently not, apparently I can blame it all on Parkinson's.  Yes, it's all Parkinson's fault.

Pumpkin cake

Now, I have a question for the researchers. My sweet tooth only started AFTER I started taking medications for the Parkinson's. I had no sweet tooth for the 8+ years that I was searching for a diagnosis. So, is the sweet tooth caused by the Parkinson's or just another strange side effect of the medications we take?

Cherry cheesecake

Clicking on anything COLORED in a story will open another window and take you to that link.

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!

YumaBev talks about Parkinson's Disease Awareness Month and National Library Week

Sarah Wisdom of the Yuma County Library District has a weekly spot on KSWT, our local CBS station in Yuma, Arizona.  She invited me to be her guest on Tuesday, April 10th and we talked about how the Library and Parkinson's Disease Awareness Month joined forces for good. This was a live TV spot, so there is no video from the station. My Wonderful Husband recorded the show on the DVR and then set up a camera and video taped the TV, so that we can share it with all of you.  

I hope you enjoy it.  Sarah was just as bubbly in person as she was during the interview and I hope we get to work together in the future. 

Sarah Wisdom and Yuma Bev at KSWT

You can find all my videos on my YouTube channel:

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

Yuma Arizona Proclaims April as Parkinson's Disease Awareness Month

On Monday, April 2nd, 2012, both the Yuma County Board of Supervisors and the City of Yuma proclaimed April as Parkinson's Disease Awareness Month.  I wish I could say I was the architect, but I wasn't.  I sent emails to everyone, but my local Parkie friend Greg Gardner made it happen.  

City of Yuma Proclamation

Greg is our local Support Group leader and has been a Yuman for many, many years.  He worked in local radio before his forced "retirement" and knows every politician in our community.  I, on the other hand, am a fairly recent Yuman and until last Monday, had never met any of our local politicos.


The Board of Supervisor's met at 9 am and Greg and I received the official Proclamation together.

Greg is the tall man in yellow shirt next to me

Our support group was meeting at Noon and Mayor Alan Krieger of Yuma joined us for lunch and officially presented the City's Proclamation.  

Greg, Mayor Krieger and Yuma Bev 

After reading the Proclamation, Greg and the Mayor turned to me and said we'd like to present this Proclamation to Bev Ribaudo, for all the work she does for Parkinson's.  It was an emotional moment for me and I could barely squeak out "Thank you".

Mayor Krieger and Yuma Bev

Board member Lenore Stuart also joined us for lunch and presented the County Proclamation to our Group.

Greg and BOS member Lenore Stuart

We had a great lunch and the best desserts and Greg did the humor.  He told the Board of Supervisor's that the reason he was wearing yellow was because he was the top banana of our Group.

Greg Gardner and Yuma Bev with Proclamation

All in all, it was a great day!

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 your favorite online book seller (There are links on my website YumaBev.com). Thank you and have a Happy Parkie Day!

Parkinson's Disease Awareness Month - PDF and Yuma County Libraries team up with Yuma Bev

I ordered pamphlets from the Parkinson's Disease Foundation (PDF), then I stopped and talked to Iris, the manager of my local branch Library about setting up a display for Parkinson's Disease Awareness Month.  She loved the idea and she suggested that I talk to someone at the Main Library.  I talked to the Main Library and they said they'd be happy to do something county wide, so I gave all the pamphlets to Iris and she would take them to the next managers meeting.

WOW!

Yesterday I went in to my local branch and Iris had set up a beautiful display. I had my camera with me and I snapped a few pictures.

Iris and Bev with PDF display

Foothills Library PDF display

Later in the day, I stopped in to the Main Library and they had set up a wonderful display as well. 

Aurora and the Main Library PDF display 

Main Library PDF display

It was easy, I ordered materials and then asked my library to set up a display. I bet you could get your local library to do the same thing.

Clicking on anything COLORED in a story will open another window and take you to that link.

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!

According to Rush, a poem by YumaBev

In March 2012, Michael J. Fox appeared on CNN.  The remarks made by Rush Limbaugh calling Mr. Fox's excessive Parkinson's Disease movements "fake" was brought up AGAIN.  Mr. Fox said as a celebrity, those kinds of remarks were just part of the job and I agree with his reasoning.  However, as a non-celebrity Young Onset Parkinson's Disease patient, I felt as though Rush was calling me and every other Parkie out there fakes as well.  


I wrote my own response to Rush Limbaugh in the form of a Poem and then I recorded myself reading it. Take a look, it is less than 2 minutes long.  

It's bad enough that sometimes our Doctor's think we are faking symptoms, when all we want is answers. Some Parkies have been told by their employers and their own families they are faking.  We are not faking anything.  Trust me, if I could stop the movements, I would, but I can't and people calling us fakers is just not right.

If you agree with what I had to say, please pass it along. Thank you very much.  


PS  April is Parkinson's Disease Awareness Month.

You can find all my videos on my YouTube channel:

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

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!

The Letter (How I finally got diagnosed with Parkinson's Disease)

I have often made reference to the fact it took more than EIGHT years for me to get diagnosed with Parkinson's Disease.  Below is the actual letter I sent to every Neurologist in Arizona during the summer of 2007.  I sent approximately 5 per week and started alphabetically.  I got their names from a Medical Board website.  I only heard back from ONE of them, Dr Zonis, the last letter I sent.  I almost didn't send the last few, I was so disappointed in getting no responses, but I had to, I was getting much worse every single day.  I was just weeks away from being in a wheelchair, yes, it was that bad.  




July, Aug, 2007 (I updated the dates as I sent them out)


Hello,


I am looking for a neurologist who might be able to help me with my symptoms.  I am slowly losing dexterity/coordination of my right hand/arm.  I am a 47 year old righthanded white female in good health otherwise.  This problem started about 8 years ago, shortly after I had a repetitive motion injury (never properly diagnosed) involving my right arm.  The injury was to the area between my right shoulder blade and spine.  Over the years I have had x-rays, chest CT, MRI from brain to t-spine, all kinds of blood tests, EKG, etc. with no help.  I've seen 3 orthopedics docs, a back specialist, mutiple internists and chiropractors.  I have copies of most of the past reports.  Here is the history:


Late 98', repetitive motion injury (quit job that caused injury)  Dr. prescribed home PT which I did for a year
Summer 99, went to work one day and could no longer double click my computer mouse with right hand
Late '99, started having trouble writing
early 2000, tremor started in right hand, by end of year I was doing most things left-handed because tremor so bad
2001, saw a bunch of Dr's and had lots of tests, nothing
2002-03, tremor worse, right hand/arm never feels relaxed
2004, decided to focus on tremor, more Dr's and tests, Diagnosis of Essential Tremor, began Propranolol
Some improvement with dexterity, though I still couldn't right click a mouse and my hand/arm still never feels relaxed
2005 to present  Tremor under control with minimum meds (Dr. lowered dose because my heart beat was too slow)
Having more dexterity problems, trouble buttoning buttons, using scissors, tieing bows, cutting meat (can't seem to coordinate both pushing down and going back and forth), writing (it takes forever to sign my name), brushing teeth (I hold the toothbrush still and move my head).  It seems like I can do something one day and then next I can't, and I never get it back.  I do alot left handed, but try to force myself to use the right one.  My arm/hand never feel relaxed and my arm doesn't swing when I walk, it just hangs straight down.  I have a tendency to hold my arm/hand like people do who are in vegetative state, I guess I'm trying to relax it.  I have no numbness or tingling sensation and have not lost strength, I still pick up heavy items right handed.  It seems like I feel best right after sleeping and it gets worse as the day goes on.


Also, a few years ago, I started to get a sensation occasionally in my right foot that my toes were being squeezed or curled under.  This sensation occurs daily now and I don't wear tight shoes, in fact, when I get the sensation and look, they look the same as the left toes.  I also seem to have trouble tapping my right foot and when I walk, my gait seems awkward, like my right leg is thudding down.  I don't know if this is related to my right arm or not.  I also startle easily and my husband says my reflexes are getting slower.


If you think you can help, please have someone contact me.  I quit working several years ago when my husband retired, I just couldn't physically do my job anymore.  I have no health insurance and we earn a 'little too much' for me to qualify for AZ's plan, my husband gets Medicare.  If you don't think you can help, maybe you could pass this on to someone who might.


Sincerely,


Beverly Ribaudo




The only thing I left out of the medical history was the 2 Neurologists I had already seen.  I didn't want to prejudice the prospective new one.  


The first Neurologist I saw, in 2002, was my Father's in Florida (Dad had Parkinson's), his exact words were "Don't waste my time, I can't help you, your problem isn't neurological". Oops, he was wrong.


The second one, in 2004, diagnosed the Essential Tremor and point blank told me it was definitely NOT Parkinson's. He also said there was no need for follow up visit.  He was in Colorado. Many years later, I found in his notes he had written (some rigidity present in right leg, Young Onset PD?), so why did he say definitely not PD?


I got lucky with Dr Zonis but at what price.  I had been unable to work since 2002 and IF either one of the first 2 neurologists I saw had got it right, my disability check would most likely be twice as much as it is.


The most interesting thing I've learned recently is the upper back pain was probably my first symptom, and yet, the pain seemed to cause the most confusion with the Neurologist's I saw.


My point is, don't give up.  There is a Dr Z for everyone out there, just keep searching.
  
I submitted a video of The Letter to the Neuro Film Festival in 2011, here it is:

You can find all my videos on my YouTube channel:

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

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!

April is Parkinson's Disease Awareness Month

I have been busy trying to get Parkinson's Disease information out to my local community.  To help spread the word online, I created a new avatar for my Twitter and Facebook pages.  Here it is, what do you think about it?