THANK YOU! THANK YOU!

Thanks to everyone who voted for me on the Wellsphere Top Health Blogger Award Contest.  While I didn’t win the TOP award, I am #31 in the 2009 Top 100 and am grateful to have won the “2009 Best of Category Award for Brain Health”.

You have encouraged me to continue this blog to report information that helps us in our fight against “the enemy”….Parkinson’s Disease.

God bless every one of you!

Tis the season to be jolly….and along with that usually comes sweets, cookies, desserts and high carbohydrate foods.  Recently I learned something very important – something I didn’t know that has a long term effect on my ability to keep my balance, continue to walk without aids, and to be independent.

You see, for several years I’ve been told that my “Hemoglobin HbA1c” test was a little high.  When I asked what that meant the answer was always – “Your blood sugar is a little high – you need to watch it.”  Well, I’ve been watching it rise gradually over the course of the last few years.

Last week I visited with my Neurologist – a very intelligent and thoughtful lady who answers my questions fully.  When she saw my results she took the time to explain this test thoroughly to me.  Here’s the information no one else has bothered to tell me over the last 5 years.

The Hemoglobin HbA1c test is a test that is a measure of long term diabetic control.  The results of this test are an average.  This means that the number that is reported is the middle number or average – and the conclusion is that there are HIGH points, higher numbers that are not being reported but are certainly there in order to reach an average.

Over time the glucose and fats in our blood coat our red blood cells or hemoglobin.  Sometimes the analogy of icing the red blood cell or attachments to the red blood cell illustrate the relationship of the glucose and fat to our red blood cell.  So each day when our red blood cells are destroyed and then are made anew the glucose and fat reattach to our blood cells.  This measurement or percentage tells the long term story of how we are keeping our glucose under control.

Now, the normal level for a non-diabetic is between 4.0 and 6.0.  When the average is above 6.0 that should send alarm signals to me because that means that the highest number in that range could be 8.0 or higher.  This is important for every person with Parkinson’s Disease to know because I am told that nerve damage in our feet takes place silently when we hit the 8.0 mark.  We don’t know that the nerves are being destroyed but they are.

Now, balance issues are a main concern for every person with Parkinson’s Disease.  Right now, I’m managing my balance alright.  I have my good days and my bad days depending on the amount of rest I get.  BUT, if I continue to allow the nerve endings in my feet to be destroyed because I ignore the long term effects of high glucose in my blood stream, then I’m asking for trouble.

Therefore, I encourage everyone of you to pay careful attention to your blood test results – especially the numbers in your Hemoglobin HbA1c test.  For those numbers are indicative of whether or not we are keeping our glucose and fats under control.

No one wants to be diagnosed as diabetic.  No one wants to have balance issues and try to solve them by becoming dependent on canes or wheelchairs.  Take heed to pay attention to your medical tests now.  I’m so grateful that my Neurologist took the time to explain all of this to me.  Usually I receive the mild scolding to lay off the sugar and starches from my general doctor.  But this time, with the information I’ve received from my Neurologist I know there is time for me to change my habits now.

So, as I celebrate during this season to be jolly – I’m grateful for information that now motivates me to monitor my diet better and exercise more.  Ho, Ho, Ho, Merry Christmas, Happy Holidays, and let’s keep our balance!

I am sitting here this morning and I’m furious…more than furious….LIVID.  Usually I refrain from sharing ANY of my political thoughts since the focus of this blog is Parkinson’s Disease and the steps I am taking to live – despite this enemy.  But today I am fed up.  I’m fed up with folks who are so short-sighted that they think only of themselves.

Today I read a blog from a fellow PWP who cares not one whit if anyone else in America has ANY health care.  He only cares for himself, that HIS insurance company is paying the high cost of his drugs, and his trips to another state to see a PD specialist.  He was on the Neupro patch and didn’t even understand (or care to understand) why the damned drug was withdrawn from the market in the United States.

This kind of self-centered, “me focused” mentality is beyond my understanding.  You know, I don’t agree with everything that’s in the health care reform bill.  But guess what?  There are people out there now, mister, who have no drugs, no doctor, no insurance and no money.  You don’t see them blogging and whining because they had to go to Canada to get Neupro.  In fact, they are living with whatever they can in order to go to work everyday and feed their children.  How do I know this?  Because I have emails from them, letters begging me to help them get into the Phase 4 FDA trial for Neupro.  And guess what?  They don’t whine, they don’t complain – they just hope that they can some day afford a drug, or even afford to see a doctor.  And here  you are bitching and moaning because you HAVE insurance, a job that you can now go to without worrying that you can’t control your bladder, and now your legs don’t jerk around at night and you can sleep.  But you want to be damned sure that those who aren’t in your fortunate situation can’t have what you have….a doctor’s care and medication.

It’s unfortunate that we each cannot dictate the bills that Congress writes.  If we could dictate our wishes then we would each have our own iteration, with specific clauses that meet OUR needs.  But today, while I am angry about the self-centered rants of a short-sighted man, I am also thankful.  Yes, I am thankful that we have a health care reform package in some form  before our Congress.  I am thankful that finally we are thinking about the “have nots” in our society.  For too long our nation has focused on “what’s good for me” rarely caring or showing compassion for those who have no health care insurance.

So, mister, while you are thankful for the insurance industry, I am not.  In my opinion, the insurance industry has dictated the direction of our health care for too long.  I don’t espouse that government can solve all of our problems.  However, there will be a day when you and I will not have medical or drug coverage by insurance because we won’t be able to work.  When we’re sitting stiffly in a wheelchair, drooling, unable to write our names on a check, unable to lift ourselves onto a toilet, at least we’ll have some opportunity to see a doctor and have some medication because members of our government COMPROMISED to offer a health care reform plan.  No, it won’t be perfect and it won’t be what you want, or even what I want.  But for those who have had nothing it will be better than what they have now.

Compromise is never about what is optimal for one individual.  We live in a country where we have diverse people with diverse needs.  The difference between us is that I want those people with Parkinson’s Disease who have nothing right now to have something.  Because as you know, living with Parkinson’s Disease isn’t easy – and it sure as hell isn’t easy if you cannot see a physician and if you have no access to any type of drugs.  I challenge you to go 6 months without seeing your PD specialist and to go 6 months without your “wonder drugs”.  Better yet, let’s take away your insurance for 6 months and then have you tell us what you are doing to cope.

If YOU had to live with reality of no doctor, no drugs and no therapy I wonder if you’d be so self-centered and continue to spout the position that health care reform in the United States is evil?  The difference between us is that I am willing to pay a bit more now so that others can have health care.  And my hope is that when you and I are sitting in those chairs the rest of this country will have my attitude instead of yours.

Tonight I couldn’t sleep – yes, once again, the result of Parkinson’s Disease or the drugs or both – I don’t know.  So, as I sat in the kitchen sipping chicken soup and reading the Parade Magazine my reality was shaken.  I read an article in the magazine written by author, Jacqueline Mitchard.  She described the unfortunate situation where she and her husband were bilked out of their life savings by a dishonest investment manager.  She also told of their decision to move forward in adopting two little girls from Ethiopia, despite the hardship they were facing financially.  She said, “We’d lost our money, but we wouldn’t lose our souls.”

I was moved deeply by their story and the decision to provide a home and family for those two young ladies.  But the part that moved me the most was toward the end of the article.  These sentences struck a chord in my heart:

“Fifteen years ago – widowed, broke and terrified – I thought I paid my dues.  Sometimes I think I’ll crack from anger and overwork and regret.  But most lives run in cycles.  If life careens downhill after a setback, that might owe as much to attitude as fate.”

Lately I’ve been angry, bitter and not very nice over the frustration of having Parkinson’s Disease.  The words Jackie wrote could easily have come out of my mouth – except for the last sentence.  Those words have shaken me to my core.  The reminder that everyone has setbacks, undesirable events, tragedies, hurts, deception, even being cheated financially was the swift kick I’ve needed lately.  The last sentence reminding me that it’s my attitude that determines the aura I walk around in – that’s what I needed to hear.

Last night my wise twenty-eight year old son reminded me that there are lots of people around me who are suffering in some sort or another.  He reminded me that PD isn’t fun, it wasn’t “deserved” and that despite my anger, the “evil” disease is there, it’s not going away, I won’t be healed.  But he also reminded me that it’s my choice in how I live with PD that determines the peace I have.

So, tonight I owe thanks to Josh and Jackie for setting me straight.  The reflection in the mirror can only be peaceful when I adjust the attitude.  Life will continue to careen downhill with Parkinson’s Disease, I can’t change that. But my attitude determines how I face this adversity.  I may need more reminders along the way.  I’m not perfect.  But I now realize that if I want peace in this circumstance I have to adjust the attitude.

It’s been unusually COLD in Texas these last few days.  We had almost 4 inches of SNOW in Houston, Austin had over 1 hour of snow flurries and it seems the white stuff was received as far South as Corpus Christi, TX!!

When the temperatures plunge I do enjoy having the opportunity to have a few chills….the summers here have been so terribly brutal the last two years.  While I do enjoy the cooler weather, it brings a new array of problems for me.  I am moving more slowly and finding that the stiffness I have in the morning goes away more slowly.

Dealing with the stiffness and inability to move freely seems minor to me compared to sweating profusely in the summer!!! LOL.  I know that there are many people who do prefer the warmer temperatures, but I like the cold weather.  Here are a few tips I’ve learned for dealing with the stiffness and slowness of movement that I’m having this winter.

Taking the time to THINK about moving more slowly and deliberately is a must these days.  While the stiffness and slowness of movement seem to be inevitable – I also have to slow down my thoughts so that I am not purposely rushing about.  In the hustle and bustle of the holiday season we are all impatient and rushing about.  I am thinking about putting one foot in front of the other.  I am thinking about how I move in a crowd so that I don’t get “caught up” in the flood of movement.  THAT’s when my feet don’t move so quickly and I stumble.

Last week, while getting off of an airplane I used my cane the entire time.  I moved to the side of the jetway and walked slowly telling those behind me to go on around.  I smile and tell them, “I’m moving a little slowly today.” and this gives everyone the green light to rush on by me.

The stiffness in my body always responds to heat and warm moisture.  If I know I’m going out where there will be other people I try to take a long bath in order to warm up my muscles before I leave.  Then I stretch slowly working my muscles into more flexibility.  It’s hard to take the time to do all of this when I have to get out of the door – but it’s well worth it.  Stretching and warming up the muscles ensure that I can move more fluidly.

If I’ve been sitting for awhile I try to move my feet and legs frequently while sitting.  Then rising from a seated position isn’t quite so difficult.  And lately, I’ve been using my cane a lot.  It gives me the stability I need and the reminder I need to SLOW DOWN while walking.

But most of all….this week I stayed inside the house when it snowed.  I took a few pictures of my husband with snowflakes in his hair….but I stayed out of the wet, frozen stuff to make sure my footing was not compromised.  I know there are many of you who do not have the luxury of staying out of the slushy, frozen snow.  So, the most helpful thing I know is to be careful, step gingerly, take your time.  And if it looks dangerous, just don’t go there.

Stay warm!

Before Thanksgiving I visited my Neurologist for a new supply of the Neupro patches and to check in for the trial.  Please understand that this is a PHASE 4 trial to get the patches back in distribution in the United States.  This is the FINAL phase for Schwarz Pharma to get these patches back into distribution.

As I mentioned in an earlier post – the patches are no longer available for U.S. citizens to purchase in Canada.  This is a significant detail to note because if they are not for sale to Americans from Canada that’s because Schwarz Pharma wants the U.S. patients to buy them as soon as they are available in the U.S.

Also, it’s a rumor from the PA at my Neurologist (he won’t say if the Schwarz Pharma rep told him this directly – but I believe she did) that the patches will be available in the U.S. after the first of the year.  I’m hoping this means February at the latest.  HOWEVER, we must take this as pure rumor since I don’t have any “official” statement from the Schwarz Pharma rep.

So, please, hang in there.  Know that the patches are coming soon.  If you purchase them from Israel or England, just purchase enough to get you through until February – and I will post any additional information as it becomes available.

I know that so many of you are suffering and that the Requip makes you ill.  Please hang in there and I am praying that the New Year will give us all the needed relief we so desperately desire.

Allie

The holidays bring many types of emotions to the surface – for PWP and those who are not suffering with Parkinson’s Disease.  For those of us who are responsible for planning and cooking meals, preparing our home for visitors, and expending our energy units to purchase gifts, wrap them and mail them, the holidays can seem like a monster waiting to lurch.

So, I’d like to offer a few suggestions for PWP and non Parkinson’s people too.  These suggestions are some of the things I’ve learned over the years to help de-stress in holiday planning and preparation.

1.  ALLOW others to help out.  This may mean that you ask them to bring a dish to the holiday meal or assist in the preparation.  In the fervor to prepare a great holiday meal, we actually place ourselves in the position of being completely exhausted – and unable to enjoy the company of those we love.

2.  IT DOESN’T HAVE TO BE PERFECT!  We only have “x” number of energy units allotted to us each day.  The holidays are time to enjoy the company of the people we love.  Don’t burn up all of your energy units on preparations that don’t really matter.  Leave enough of your energy units so that you can actually ENJOY your visitors.  Besides, those who love you will still love you with dust on the furniture!

3.  IF YOU TRAVEL, be sure to take snacks and a water bottle with you.  If you are flying, those airport delays and runway delays may leave you without food to take with your medicine.  Common sense tells us to “be prepared” – but sometimes we forget that we need to plan for the unexpected!  Even if you travel by car or bus, prepare for the unexpected so that you will be able to take your meds without interruption.

4.  GET SOME REST!  Yes, this is me talking to myself!  When I’m with my family I don’t want to miss a minute of being with them.  I rise early to be with the kiddos, and will try to stay up late to be with the adults.  Do what is in YOUR best interest – and get the rest you need.  Your rest is critical to having a good attitude, being attentive and having some normalcy in your routine.

5.  BREATHE!  So many times when stressed, in a hurry or just trying to maneuver through the day I find myself holding my breath!  Be sure to remember to breathe deeply.  Take a minute to close your eyes, breathe deeply into your diaphragm and exhale through your mouth.  Do this 5-6 times and keep your shoulders down, chin level to the ground  with your head held high.  You’ll be surprised how this helps you to relax, get the oxygen to your brain and de-stress you in just a few minutes.

Enjoy your holidays – and remember – it’s only another day out of 365 this year, but it’s a time to fellowship with those we love and rejoice in the blessings we have.

December 6th will be 20 years since Mom slipped away into eternity.  Seems like yesterday I told her good-bye and kissed her when they took her into surgery.  Seems like yesterday when I waited and waited for the doctor to come into the waiting room to give me the update.

Today I’ve really missed Marie Nana…my mother.  I went to another doctor’s appointment today – and when I left I sat in the car and cried.  How I wish I had my very best friend, my mom, around to talk to when bad news comes.  How I wish my very best friend, my mom, was around to discuss some of these test results.  She was so smart and analytical.  Mom could cut to the heart of the matter quickly – and even see some of the “hidden” motivations that some people work hard to hide.

Yup, I’m missing Mom.  For those of you who view your parents as “pains” and do your best to ignore them or stay away from them, shame on you.  My Mom left when she was 65 yrs old.  She left too early, and had many, many more years in her body – but her little heart just couldn’t make it through the surgery.  Yup, I’m missing Mom.

When you see your Mom and you cringe because she’s losing her memory, gritching at you (because you’re the only one to listen to her) or if she forgets what you just said, I have one thing to say……enjoy the days you have with her.  Because the days with her will soon be gone – and then you’ll be left alone with those unsaid things, unexpressed feelings, and an empty chair where she once sat.

Yup, I miss my Mom – and someday, maybe someday soon, I’ll be able to hold her hand again….in heaven.

Since I am able to manage my Parkinson’s Disease well with my meds – I haven’t given much thought to the caregivers who devote their lives to assisting their family members and loved ones.  Today that changed.

Once sleep was so elusive for me, but lately it’s been more regular.  The stormy front moved through last night about 3AM and it awakened me.  Rather than eating ice cream in the middle of the night, I decided to read some blogs.  I found a poignant and rather sad blog from a caregiver named Peter T.  He is caring for his wife and she has PD and dementia.  My heart hurt when I read portions of his blog.  Please take a few minutes and read some of Peter’s entries: http://thecaregivercalling.com/

Caregiving is a thankless place to be.  The caregiver makes so many sacrifices – on so many levels – and does not expect anything in return.  This type of courage and self-sacrifice is evident in Peter T.  He is devoted to his wife, Mary Ann, and cares for her physically, emotionally and medically.  His persistence and ability to laugh in the face of some very sad times caused me to pause and think.

When I am at the stage of PD where Mary Ann is now – will my family be able to face my disease with the courage and honesty I see now in Peter T?  I hope so.

For all of you caregivers who sacrifice so much for those you love, God bless you.  I am lifting you up in my prayers this morning.

Last week I took off a few days and went to Durango, CO with a friend.  When in the midst of the work world I forget about the value of rest, the value of relaxation, the value of doing nothing.  Life is measured by achievement, success by completion, and worth by how much money we make.  No one tells us to relax, rest and do nothing to increase our value in society!  Yet, that’s exactly what this trip taught me.

Those of you who know me know that I’ve begun felting wool, recycling wool sweaters and blankets and making laptop sleeves, purses, tea cozies and doggie sweaters from the wool.  My friend accompanied me as we combed through thrift stores looking for 100% wool.  Needless to say, in Colorado ski country, we hit the jackpot!  I had so many great woolen items, I had to ship them home in a large box!

I didn’t take my laptop computer on this trip.  I didn’t answer work emails.  I put on my “out of office” and ignored the problems and quasi-crisis knowing that those who were monitoring my messages were fully capable of handling every problem, question, and inquiry.

Instead, I spent time knitting, sipping wine, rocking in the rocker, laughing and conversing.  It was restful, truly restful.  And with all of that rest, my mind cleared.  I realize that I do need to spend more time doing the things I enjoy – knitting, felting, fulling, and creating from natural fibers.  Funny how a bolt of lightening hit me while standing on the sidewalk in Downtown Durango – I realized I want to do the things I enjoy….I haven’t allowed myself the time to really consider that before.

Having a realization, an epiphany, and then actually doing something about it – well, that’s two different things!  I know that the time I have to sew silk, bead, and work with my hands is limited by my PD.  EVERYTHING is limited by my PD, IF I allow myself to succumb to that attitude.  Yes, I may drop beads, have to rip out stitches that are crooked or malformed, but at least I’ll be doing the things I enjoy.  Moving slowly and more deliberately is frustrating and sad for someone like myself, who is “high energy”.  But, if I never take the chance, if I never try – then I’ll continue being a good workbot….and life will become more sad.

So, the message today – rest is vital, important, and can produce some special results.  Resting in Colorado meant an epiphany for me….so resting is a blessing.