I would love to give credit for this post, but I can’t identify who wrote it. It appeared in this months Northwest Parkinson’s Foundation newsletter.  Enjoy!

My Parkinsons’ Disease Diary

OK, we already know that caffeine is supposedly neuroprotective and has a role in preventing Parkinson’s disease. I’ve been drinking coffee since I was 14. I have Parkinson’s.

We already know that nicotine is supposedly neuroprotective and has a role in preventing Parkinson’s disease. I’ve been a cigar smoker since I was 17. I have Parkinson’s.

Here’s a NEW reason why I can’t possibly have PD.

People who regularly take the over-the-counter painkiller ibuprofen may have a lower risk of getting Parkinson’s disease, a new study says. Researchers from the Harvard School of Public Health studied more than 136,000 people over six years and asked them about their use of aspirin, ibuprofen and acetaminophen, which are all classified as non-steroid anti-inflammatory drugs, or NSAIDs.

During the study, 293 people developed Parkinson’s disease. That’s 0.2 percent of the people. The researchers said in a news release [that people who took] ibuprofen were 40 percent less likely to develop Parkinson’s disease than people who didn’t [take it]. Also, people who took higher amounts of ibuprofen were less likely to develop Parkinson’s disease than people who took smaller amounts of the drug. The results were the same regardless of age, smoking and caffeine intake, they said.

I’ve been a regular taker of ibuprofen since my late 20s when I first developed arthritis in one of my knees. So, if this is all true…

I can’t POSSIBLY have Parkinson’s disease.

So, what the heck is my neurologist talking about?

Just in:

Would just like to let everyone know that it is my understanding that the last phase of clinical trials is underway. I was very lucky to have been included in these trials. I initially flew to Germany to get the patch before it was released in the US. way back in I think 2006. I was able to maintain my supply through a pharmacy in Munich, although I had to have it hand delivered. It is, to say the least, an amazing medicine. I feel for you all and understand your frustration, but I think great things are just around the corner.

‘Thomas’

Thank you Thomas!!!

Finally, thanks to a contact in the Northwest, I found out yesterday that he has gone back east for a year to care for a member of his family.  I was told to keep in contact with her and that when anything changes/she hears something, she will let me know.  Hope this gives some of you some answers.  When I hear something/anything else, I’ll let you know.

Meanwhile, keep your spirits up and hang in there!

Sherri

With winter (hopefully) over soon, I hope that the warmth and sunshine of spring will overwhelm you with happier feelings than the dark clouds of winter often bring.

If the sun is out but the cold air still prevents you from enjoying it, do as our pastor’s son did and climb in your car, park where the sun hits you and turn the heater to high. Now close your eyes and picture yourself at the beach. Maybe put on your sunglasses for effect. If that doesn’t work, make some popcorn and put ‘Endless Summer’ in your movie player and pretend you’re in the actual movie itself, which is all filmed at the beach. It’s a hilarious at-the-beach movie that will cheer you up.

On the main reason for this post:

Go to http://parkinsonsjourney.com/the-thing-about-doctors and leave a comment re: survey. I am very interested in your experience. My experience shared has got me thinking a lot of things…

Three other surveys, if you please, for my book in progress:

Survey #1 – Men vs. women: As a man (if you are a guy) or, as a woman (same rule applies [women]) – what is (are) your biggest fear(s) as a patient with PD or a chronic illness? (specific physical, non-physical, or both answers, please – can be anonymous or not).

Survey #2 – As a parent of a child witih PD or a chronic illness, how do you find support/encouragement/your coping mechanisms?

Survey #3 -Caregivers: What is the best way you have found to ‘cope’ – that isn’t the best word, but I think we all understand what I mean. This is for all who care for someone with ANY illness/disease.

Thanks to all who can help out in any way.  You can leave your answers as a comment or send to sherriwoodbridge@hotmail.com.

Sherri

I was thinking of attitudes and how we express ourselves to others. It is really a choice. I have always liked the saying, “Your attitude is a reflection of your gratitude.” If we are grateful for things and have an optimistic outlook, we tend to act one way versus the way one who is pessimistic may behave, feeling they have no hope or they are beat down.

We all have minutes, hours, and even days were we don’t feel the best and life has just ‘bit us in the butt’, but the journey is much more pleasant when we decide to think positively and look ahead with hope.

So here is my alphabetical choices of attitudes we can have. The choice is yours to make, and I hope your outlooks tend to be more like those in the second column!!!

Accusatory vs. Accepting

Bent-out-of-shape vs.Blessing

Critical vs. Complementary

Dismal vs. Delightful

Emptiness vs. Expectant

Flaming vs. Forgiving

Gossiping vs. Genuine

Hateful vs. Happy

Loathing vs. Loving

Jerks-are-me vs. Jovial

Knave vs. Knight

Insulting vs. Inviting

Mad vs. Motivating

Needy vs. Nourishing

Overbearing vs. Open-minded

Pouter vs. Proactive

Quitter vs. Quickener

Rebellious vs. Reaching out

Seething vs. Soothing

Terrible vs. Terrific

Unlovable vs. Understanding

Vile vs. Victorious

Wicked vs. Wonderful

XYZ– Don’t’ you think this is enough? If you don’t, you can do XYZ for me!!

Thanks
Judy

I have a new doctor. No, I didn’t dump mine and contend for another. As most of you know, mine lost his practice because of lack of funds, and cutting back on Medicare closed the doors. I can say with certainty that he was most likely the best in the west.

A patient never waited more than ten minutes, tops. His nurse was the best. He spent time with you as if you were all that mattered on his list of patients for that day. You knew he cared and could understand first hand what you were dealing with, having a similar physical fight of his own to deal with. He explained things in such a way so that you felt educated when leaving and could understand yourself what was going on inside of you. He was compassionate and so kind. And he’s not there anymore.

So, I have a new doctor. And while he was ‘okay’, the difference between the old and new was blaring. This new doctor (new to me but near retirement) was kind, smiled at the right times and all the rest, but he was not Dr. Anthony Santiago, MD. MDS. VIP. Didn’t even come close.

Today’s doctor wasn’t bad – he just wasn’t Dr. Santiago. I didn’t know him and he didn’t know me. I am quite confident that I am not going to enjoy these ‘new’ visits, unlike those I had with Dr. S- who always had a smile, a laugh, a genuine concern for his patients. And, I NEVER had to strip down to my skivvies for an exam. What is up with that?

Survey: How common is that (for PD patient exams)? I’ve been to three other neurologists and have never had to do that. (Leave a comment, please.) Weird.

I came home and cried. I just want Dr. Santiago back but I know I have to face this. Problem is – I don’t want to.

Meanwhile, another reason I want my doctor back is for another situation the doctors are looking at. They’re wondering whether the lupus that they thought was a brain tumor and then MS and then ruled it all out by mere lack of evidence and then thought perhaps it was the PD starting in my early 30’s instead of 2004 – well now they’re back to looking at lupus since my ANA is off the charts. I’m curious, however, to find out what it is and if that’s what’s causing so much of the pain. Time will tell.

Until then, we are promised today only and I am so grateful I know Jesus and the unrelenting fact that we don’t go through anything alone.

A friend so timely emailed a link to a beautiful song today. It was waiting in my inbox when I arrived home after my appointment. I clicked on it and listened. God is sovereign and knows just what we need, just when we need it. I hope you’ll listen to it and be as blessed.

http://www.youtube.com/watch?v=diUhGip85U8

What’s on my mind of late……

It seems like alot of people I know are in what I call a ‘funk’ right now. And it’s not too surprising. I mean it’s the middle of winter, and here in East TN we’ve had an unusual amount of real cold and snowy weather. A couple of days it was so cold I could not even make myself sprint from the warmth of inside the house, across about 20 feet, to the warmth of the hot tub.

If you haven’t figured it out by now, I love my hot tub. People ask me if it helps with my Parkinson’s symptoms and all I can say is “It really helps while I am in there!” There is only one problem: I can’t stay in it 24/7!

There are lots of other contributing factors to the ’funk’ mode so many of us find ourselves in, such as…

~We may be having health issues or someone we know may be ill. I don’t know another time past when I know so many with seriously ill family members.

~The economy is in a major down-turn. We may have family members unemployed or know more friends having to deal with economic crises.

~As if those two are not enough…then the Tiger Woods thing happened….

~The Colts lost the Super Bowl, and I couldn’t make it to Kentucky to see Sherri while she was there….L .

But don’t give up my friends…just as the seasons cycle, so do there dreary times in our lives. Personally I am starting to feel some better because:

~My daughter’s basketball team won their regional championship and my so very talented and athletic daughter was MVP!

~The sun was out for 2 days in a row recently

~Girl Scout cookies just got here. I love those shortbread cookies and a cup of milk!

~Survivor is one with a new group and this time it is former players of “Heros’ vs. Villans”, plus college basketball NCAA tournament is coming up soon, and the winter Olympics are on TV as well.

And in the PD world, excitement is building for the Unity Walk in April and a fundraising climb with the Regulars up Mt. Washington in late July.

Let us know what is happening in your world that is helping you out of a ’funk’!

I’ve been looking through some old pictures and found this random set. You can view my eclectic group of pix in the slideshow:

http://www.flickr.com/photos/70487584@N00/sets/72157600409561823/show/

And I’d be curious as to what traits you can see of me from them!!

Here’s to leaving funks in the dust!
Judy

I’ve been gone. Gone to Kentucky for a week, to be with my brother through his hip surgery and hopefully I was some help afterward. Three weeks ago, I was in Montana helping my mom with my dad after his back surgery.

A lot has happened in between then and yesterday. For example, I broke my toothbrush. What?! you may ask. Yes, I broke my toothbrush. It was one of those electric kind that run on batteries and my hand was refusing to cooperate and the harder I pushed, the harder I scrubbed, well… it broke.

And, that was the last straw. I broke down. For the (I think) first time since being diagnosed five years ago, I was angry and grieving. Through that melt down, I learned several things (not in any particular order).

1. I am tired.
2. I cannot do what I used to do.
3. I can’t cope with disorganization in my life.
4. I am frustrated that I get distracted so easily.
5. I want my doctor back.
6. I came home seeing improvements in the people I cared for, while nothing inside me got better.
7. I know that things can always be worse.
8. No matter what does or doesn’t happen, it will not catch God by surprise.

I started this blog about four years ago as more of a journal. During my melt down, I realized I miss that. Sometimes I think I have to be strong and not let others see the struggle within me because of this disease. I have tremors that are becoming more noticeable, but it’s what goes on inside of me that makes others say things like, “You sure don’t look like you have Parkinson’s disease.”

Sometimes, don’t you wish you could switch birth suits so others might have a better understanding? Everyone’s perception of certain diseases is different. Many people don’t realize all the different elements that can be prevalent in Parkinson’s. Depression. Loss of smell. Pain. Loss of mobility in doing basic, simple tasks like tying your own shoes. There’s so much more, but I don’t need to go into that.

The thing is – I love to write. It’s harder now than it used to be. I don’t even attempt handwriting anymore unless it’s signing a card or something similar. Even the computer frustrates me, especially when my ‘mobility’ isn’t cooperating and my mind is racing with ideas.

I love to encourage others because of what I’ve gone through. I believe that God always places someone a little further up on the path of life, so that they are able to help us on our journeys. Someone a little more experienced, a little bit wiser. They come alongside us and there’s an instant camaraderie. The circle becomes complete when we do the same thing for others.

So, even though my discouragement (and sometimes despair) kicks in and beckons me to walk toward the side of the road where discouragement dwells, I’ll remember my list…

1. I am tired, but I’m still kicking.
2. I cannot do what I used to do, but I am doing something.
3. I can’t cope with disorganization in my life, so I am working on simplifying things in my life so I don’t get so frustrated.
4. I am frustrated that I get distracted so easily, so I am making a concerted effort to improve my brainpower any way I can. (Anyone have any suggestions?)
5. I want my doctor back, but I’m willing to go where God sends me.
6. I came home seeing improvements in the people I cared for, while nothing inside of me got better… and that’s okay.
7. I know things can always be worse and just might, but…
8. …no matter what does or doesn’t happen, it won’t catch God by surprise.

So, I guess this is to say, I hope to get back to posting more regularly and more personally as I journey day by day with PD. After all, it’s when we allow ourselves to become transparent that we can do the most good for those coming behind us.

Who’s following you?

I recently traveled to New Jersey and was a guest at the home of Eileen “Strong Feather’ Colon. It was a great joy to meet Strong Feather again and to meet her family and some of her friends who support her in her endeavors with the Regulars. It was a great privilege of mine to meet the founder of the Regulars, Enzo Simone, at Strong Feather’s home. Enzo is an amazing person whom I admire for his passion and commitment to ending Parkinson’s disease (PD) and Alzheimer’s disease (ALZ). His mother has ALZ and his father-in-law has PD.

(This is written as a parallel to a blog article “Friendships” posted on Jan 3, 2009 on 10mountains10years.blogspot.com by Strong Feather of the Regulars. “Friendships” was written a year ago but it all will always ring true.)

Friendships