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?

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 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?

It was a year ago exactly, that I was surfing the net and came across a group of regular people that caught my attention. I didn’t know anything about them, but I was intrigued when I discovered what they were up to.

They call themselves the Regulars. For those of you not familiar with this group, they are a team of ordinary people, on a quest toward a great purpose. They are determined to bring awareness to Alzheimer’s and Parkinson’s disease in order to find a cure.

The group, founded and led by Enzo Simone, began its quest in 2006. A Trail Called Hope was born out of Enzo’s desire to see Parkinson’s and Alzheimer’s disease conquered by bringing worldwide attention to help in finding a cure. His method? Conquering one mountain at a time for the next ten years and forming an ever-changing entourage of members who climb with him each year.

Several have been invited to climb, but not all are able. If physical limitations don’t present a barrier, then the work it takes to just get to the trailhead itself may hinder a wanna-be Regular. In Enzo’s words, “Becoming one of the Regulars is not a flight of fancy and will require you to work hard in more ways than you can imagine. You will promise yourself and others a number of things by becoming one of the Regulars.”

What exactly are those promises? Enzo calls them the Regulars’ 11 Commandments, making it clear what is expected from each team member. Some of them are:

~You must be willing to fund raise.

~You will be willing to make many sacrifices.

~You must be willing to raise awareness.

~You must be willing to pay your own way for all expenses.

~You must be willing to share your experiences with others.

~You must be willing to promote the need for not one, but BOTH Alzheimer’s and Parkinson’s to benefit the Alzheimer’s Association AND Michael J. Fox Foundation – Team Fox.

~Although the following is not a requirement, it is usually best if Alzheimer’s has impacted your family (or Parkinson’s) so that you have seen the devastation first hand and can tell others through your own experiences with these diseases.

Raising awareness and funds for Parkinson’s and Alzheimer’s disease is not just an agenda for Enzo. It is also a personal quest. He sees the devastation it has caused in members of his family. He knows of and has lived within its consequences with loved ones – first hand. However, because of the trail he has chosen to walk, he has seen and/or met hundreds, if not thousands of others who have been affected by these diseases. He knows their struggles, their dreams, and often many times, their hopelessness. However, Enzo’s motto: In the quest to conquer Alzheimer’s and Parkinson’s disease, we were born to end this! In living his motto, he in turn has revived hope in the people who are afflicted with these diseases.

In his latest climb, he and his team conquered Mt. Kilimanjaro in July of this past year. The climb was filmed and sections of can it be seen in the upcoming documentary, 10 Mountains 10 Years, which is being produced by Back Light Productions. The movie’s introduction is done by Leeza Gibbons, narrated by Anne Hathaway and Bruce Springsteen has contributed his time and talent to the project as well. The film festival locations and dates, however, have not yet been released. This is currently the Regulars’ largest awareness project/fundraiser they’ve currently got in the works.

Their next climb? What originally was to be Aconcagua in Mexico, the Regulars have taken a side trail and substituted “The Army of Change” Mount Washington project in New Hampshire to their list of mountains to conquer.  This ‘little jaunt’ was added for the benefit of those who are fighting for a cure for Alzheimer’s and Parkinson’s disease and are unable (for whatever reason) to conquer an Everest or a Mt. Hood but want to participate in some sort of climb. Because of the magnitude of interest the Regulars are stirring, they hope to get at least a thousand advocates climbing Mt. Washington together this summer. (If you would like to be a part of the Mt. Washington climb taking place on July 31, contact Enzo Simone at the Regular’s website 10mountains10years.)

As I said, it has been almost a year since I first heard about the Regulars. Within that year, they have raised thousands of dollars to find a cure for Alzheimer’s and Parkinson’s disease. Within a year, they have climbed a minimum of 19, 341 feet – the height of Mt. Kilimanjaro. Within a year, they have brought considerable attention to their cause – a quest to end these two diseases. Within a year, they have given hope back to those afflicted by two debilitating diseases and enabled them to dream once again because of the attention this team of regular people are bring to these diseases.

If you’d like more information, you can visit their website above or find them on their Facebook page, 10 Mountains, 10 Years. Perhaps within a year, we’ll have witnessed history and seen a cure finally found for Parkinson’s and/or Alzheimer’s disease. Now, wouldn’t that be a mountain top experience!

I received (as well as some others of you) a message from Scott McDonald today. Scott is a staff member of the Parkinson’s Action Network (PAN). With the message was attached the following link, which takes you to a video that “provides greater detail about this year’s [PAN] Forum. ” This will be “a live, online broadcast on February 17, 2010 from 11 am to 5 pm EST”, giving “greater insight into the Forum experience. ”

Thanks for PAN for the video and all the work they do for supporting those with PD/YOPD and helping in our quest to find a cure.

Watch the video and then make sure you register for the event at the link provided below.

Register here:  PAN Forum

Are you tired of the cold northwest dumping more than snow on you? Awaiting you is a warmer yet wet little area of the northwest not commonly mentioned.While browsing the internet two days ago, I came across a phenomenal breakthrough in opportunities to fit your specialty.

The Best Job in the World

By clicking on the above link, you will be connected directly to the site where awaiting you is an opening needing the greatest neurologist in the world who also specializes in movement disorders, among other specialties.

Let’s take a quick look at the magnitude of this opportunity, as stated in the job description:

Premier southwest Oregon private practice is currently scheduling interviews for a board-certified / board-eligible Neurologist.

You will have the opportunity to sub-specialize in the following areas (fellowship training preferred): Cerebrovascular Disease/Stroke, EEG/EMG, Epilepsy, Movement Disorders, Multiple Sclerosis, Neurophysiology, Sleep Disorders, Pain or Pediatrics.

-Enjoy a competitive starting salary, comprehensive benefits, pension plan, and partnership track when you join this dynamic clinic (Please note they said ‘dynamic’ – I didn’t have to entice you with big words)
-Be busy from day one (I will be your first patient to guarantee this benefit!)
-Large catchment area of over 600,000 offering a solid patient base (I can also guarantee a solid patient base as Parkinson’s Journey has several of your past patients patiently waiting to hear that you’re not too far away from landing nearby, and ready, if need be, to welcome you at the newly renovated Rogue Valley International Airport, with two baggage turnstiles and all on one convenient level!)
-Well-established physician referral network (I’m not sure how I can guarantee this one.)
-Collegial practice environment (I can guarantee this, as the university is so close and think of all the young minds you could mentor.)
-Terrific work-life balance (I can guarantee this by stating that your drive to work will not be anywhere near what you had to drive to get to Spokane / Liberty Lake – unless of course you find a home that far out again!)

The Medford Neurological & Spine Clinic has a 44-year history of offering comprehensive neurological services. As the only full-service clinic in the surrounding area, our clinic staffs both neurologists and neurosurgeons and specializes in adult and pediatric neurology, electro-diagnostic studies, stealth frameless CT- / MRI-guided cranial surgery, skull base surgery, microsurgical spinal surgery, transphenoidal adenomectomy and stereotactic radiosurgery consultations. (Isn’t that just so exciting?!!!)

Would you consider joining our team? Apply today! (Please!!!)

If the above weren’t enough to entice you, get your wife and read on (I will highlight the strong points for you):

Medford, Oregon is surrounded by beautiful mountains and offers moderate temperatures year-round. (Consider the lack of snow shoveling you’ll have to do!) You will appreciate our outdoor recreation, such as golf, mountain biking, fishing, boating and skiing, as well as enjoy our first-class day spas, outdoor concerts, award-winning theatre performances, and monthly festivals. Medford, Oregon offers affordable luxury homes, excellent public and private schools, and LOW PROPERTY TAXES; plus there is NO SALES TAX in the state of Oregon! And, for those who enjoy the beach, the Pacific coast is a short 2.5 hour drive from Medford. Come home to Medford! Apply today!

And now, if that still hasn’t convinced you, consider these pros (cons are of no concern here):

~ Gardening in Medford cannot be compared to anywhere else on earth. Prize winning pumpkins, world famous pears and more await the avid gardener and his/her spouse.

~ Cultural activities are as diverse as the world famous Ashland Shakespeare Festival or the Jackson County Draft Horse Pull.

~ Guided tours of Harry and David, where free samples of raspberry shortbread cookies are handed out when the tour ends.

~ Holiday events galore to welcome the Christmas season and more – Gingerbread House Festival, Ashland Christmas Parade with the spikey head snowmen and fun beyond belief.

~ Farmer’s Market through the summer months with fresh fruits and veggies. Dogs have been banned which takes away the fear of being devoured while shopping.

~ Discounts at the supermarket Friday mornings on old breads and meats.

~ Nearby and historical Jacksonville offers a peaceful atmosphere and the Britt Festival with world famous musical artists such as James Taylor.

Now, some may think I’m being selfish and that I just want my doctor back (which I cannot deny as being true and don’t relish the thought of anyone else messing with my brain), but really I’m just worried about you not having the opportunity to touch other’s lives with your calling. At the very least, with all attempts of humor set aside, I hope you know just how much you are missed.

Sherri