Happy, Merry, Blessed......Ugh....Christmas.

   December 2015

Well, it is almost upon us again.  My once, very favorite time of the year.  "Once", meaning, pre-diagnosis.  Now, I understand where the Grinch, Scrooge, and the many, "Bah Humbugs", I've heard over the years, have come from..  The ones whom I would stare at in disbelief, my jaw surely dropping to the floor.  Those that did not LOVE the Christmas season.

Christmas carols, cards, angels, Santa, lights, trees....all the things that I would look most forward to.  And, as an Elementary School Teacher, I was as busy as an elf, taking in all the Christmas fun a person could absorb.  Then......the Grinch seemed to take over, slowly at first......then totally transforming me within the last couple of years. 

Parkinson's Disease can do that to you.....not just at Christmas, but at any occasion that once filled your heart with anticipation and joy.  Parkinson's replaces the anticipation with dread, and the joy, with hesitation. 

Of course we continuously dabble in the realm of apathy, but preparing for big family celebrations is beyond that.  It is an awareness that you are about to have every bit of energy zapped from your body.  And any reserve you may have stored will be sucked out in the week following the big event.

Preparations will appear overwhelming - make a list, prioritise, ask for assistance, cross things off if needed

The social aspect can be daunting - keep invitations to a minimum, or break large group up into more
                                                       more manageable groupings, prepare yourself with general
                                                       conversation starters if needed (eg. How are your children/family etc,

Set time of gatherings around your best part of the day - when you are most focused, medications are
                                                      "on" times, you are the least fatigued

Physically limit as required - perhaps skip the hayrides, and insist you stay to help the hostess, or remove
                                                        yourself from the large group, to a more intimate area that will
                                                         allow you to attend to one conversation/activity/etc., at a time

Have an understanding Care Partner with you - someone who knows your routines, struggles, medications a
                                                         and your areas of strength

Whatever the activity - ALWAYS take your medications on time.  Allow someone to assist with the timing
                                  and reminders, as required.

So in reality, it is not that PWP become Scrooge or Grinch-like at Christmas time.  Rather, we need to prepare ourselves, emotionally, physically and medicinally, so that we can enjoy and participate to the very best we are able.  Time.  We just need more time, and please forgive our "slowness".  Patience is a gift to us....better than any wrapped up under the tree.

When we have some of these things in place, we can  begin to love the holidays again.  Love to entertain again,  and feel like we are part of life, again. 

A very happy, merry, blessed, Christmas to one and all!!!!  Stay strong.....Take your meds on time!!

Parkinson SuperWalk Durham Region: Mrs. Donna Langnhuizen - Parkinson SuperWalk

Parkinson SuperWalk Durham Region: Mrs. Donna Langnhuizen - Parkinson SuperWalk






On June 2, 2015, I celebrate my 51st birthday.  My youngest son and his girlfriend organized a, Team UnSHAKEable, for the 2015 Parkinson's Superwalk.  What an incredible gift.  It is so humbling to have such amazing support.  That is true love.  I am blessed.

Moms are Amazing - Grams have Superpowers

  May 2015

Mother's Day begins officially in 22 minutes.  Why am I up at the midnight hour posting a blog?!? This Mother's Day is weighing heavily on my mind.

My mom has been gone for many years now, passing at the age of 54, from Leukemia.  I, at 50, have been diagnosed with Parkinson's Disease.  And, the good news is that my oldest son will be having my first grandchild in November.  Mothers, mom, mommy...Grandma, gram, .....what amazing role models I have had...will I be???

Mother's Day  has over the last few years has  been somewhat of a mixed ball of emotions..  I miss my own mother today, as much as the day we lost her.  But my own role as a mother, has been one of my greatest achievements.  And now, I will be stepping into a new set of shoes...shoes that I hope to fit into...and do some justice.

I know without a doubt, that my role as mother felt very much like it was something that I was just meant to be....proof is in the pudding.  I couldn't be more proud of my two sons, the men they have become, and I forever revisit my memories of my beautiful life with them as infants, toddlers, children, and .yes...even as teenagers!!

My mom was my mother first and foremost, and secondly, my best friend.  I have tried my best to emulate that role for my sons.  Mother first....to protect, direct, guide, provide, and assist.  Best friend next....to listen, discuss, challenge, enjoy and just embrace..  Hopefully in that manner, in that order, I have gained respect, and a trustt, that I had with my own mom.

I remember watching my mother develop into her  role as a grandmother.  With the birth of both my sons, she pushed me to take the reins of disciplinarian,  while I watched her ride freestyle. Love and memories were the goal of every moment spent with her grandchildren  She made this new role look like pure fun, rich involvement, and an abundant amount of love that just resonated.

As I spent the last few days with my mom, she expressed how proud she was of the mother that I had become.  I had never felt so honoured......and now, I know she will be coaxing me into upping the ante as I begin my journey through grandparent-hood. 

My worry is in being healthy and active enough, to be great.   In my mind there could be the  limitations of my Parkinson's.  But if life as, grandma, is even 1/8th as incredible as that of, mom,....well....with a few adaptations, wee changes tweeked here and there, PD will not get in my way.  Grandma's have superpowers!  And I am determined to use every last one!

Happy Mother's Day!

Teleconferencing with my Movement Disorder Specialist

I had my first, Telemedicine, appointment with my Movement Disorder Specialist, today. The Ontario Telemedicne Network (OTN) uses videoconferencing  as a way to reduce time, cost and stress associated with travelling to an appointment.

I arrived at my local hospital and was greeted by a Nurse who took me to the office and set up the screen, video camera, and faxed my medication list and a form I completed with what I wanted to discuss, to my Specialist.  He received it, reviewed it, and then within 15 minutes he appeared on the screen.

We made our usual pleasantries, and I updated my wellness.  He had the nurse perform the usual hand/finger coordination tests, and walking test.  We then discussed how things have progressed since our last visit.  As I updated him, my doctor replied, "So it sounds like things have actually improved a little for you.  What brought about these changes?"

I stopped, and really had to think about this.  With my doctor being transported to the room via flat screen, he was still able to hear, understand and feel my emotional well being.  So I presented him with changes I had made during this PD Awareness month.

I began to explain some of the things I had adopted throughout the month, by the barrage of information that had been generated in my online PD groups.  The first thing I did was ask my regular physician to include testing of my vitamin D and B12 levels through blood work.  As I had expected, through the discussions and information online, they were both deficient.  So I began a daily regimen of D and B12 supplements.

Including daily exercises via walking and stationary bike, seemed to help alleviate some of the rigidity I had been experiencing.  This was commonly discussed as a necessity for PWP, but this month, with the push on moving (via walks, runs, dancing) for PD, I could no longer ignore the importance and impact others were receiving from daily exercise.

I got back to filling my day with hobbies and things I enjoyed, and would look forward to doing as part of a regular schedule.  They included reading, which although I have always enjoyed from a young age, had simply put on the back burner.  I become engrossed in a good novel, and become immersed in the world that I am reading.  It gave me an hour or so of relaxation, and a way of escaping the real world.

 I also got out my sewing machine, and with the news that I am going to be a grandmother in November, began to search Pinterest for baby ideas.  I planned and shopped for the material to begin these new projects.

I try to get out at least once a day.  To actually leave the house.  It may be as menial as going to the grocery store, or library, but I am getting out of the comfort I have made in being at home.  Seems so small an adjustment, but it is huge in pushing my limits.

Planning upcoming events, such as my Family Reunion, and an upcoming baby shower, have given me goals to work towards.  Events that I must pre plan, set goals, and follow through with.

In short, I guess I have taken back control of my life.  I am participating in life again.  I am not wallowing in the fact that this disease has taken everything away from me.  I have learnt to work around it, push myself, and do things that although may be uncomfortable, will impact a positive outcome on my overall health.   As the saying goes ....I have Parkinson's Disease...it doesn't have me.


Now, having explained all of these changes to my doctor, who was listening to me on the big flat screen monitor, responded simply, "well keep that up....it is definitely working for you".  With that he signed off and the nurse and I booked my next appointment.



PD Awareness month  has bombarded my computer.  I took in the information, and actually felt the necessity to finally apply it.  I took control.  And my Specialist, miles away, looking at me through a camera, noticed.  Teleconferencing was not as impersonal as I had expected.  It actually did as it professed..It reduced the stress of getting to the appointment, and allowed me to actually relax, and fully participate.

Technology continues to amaze me.  Through technology I was given information, applied what was useful to me, and then delivered it to my Health Care Professional.via Teleconferencing. Who said technology is impersonal?  Perhaps it is time I invested in a cell phone.....whaaattt????!!  No, I still don't find the need to be connected 24/7.  Baby steps.

A Poem to inform....perhaps not the norm

Statistics, information and awareness can become redundant,
when statistics and promotions are so very abundant.

But fighting for a disease and informing the public,
should really be more than a month of the subject.

Parkinson's is one of those that you just,
continue to talk about it, definitely a must.

Young Onset, at first is overwhelming and fraught,
by images of the elderly, like it or not.

Whether young or old, it grips us the same,
from Uncle Peter,  to those of great fame.

Michael J Fox and Muhammad Ali
are faces by which we can all rally.

Everyone knows about their tremors galore,
but oh  the disease,  holds so much more.

Non motor difficulties are hard to describe
It is the hope that they will eventually subside.

But the depleting dopamine makes it clear
these changes are happening and staying quite near.

New medications, treatments, and a cure,
are all we can hope for in the near future

So until a day we can be Parkinson's free
awareness, awareness, is what must be.

FIGHT PARKINSON'S.....KILL IT WITH KNOWLEDGE....AND FIND A CURE...
.IT JUST HAS TO BE OUT THERE..... ONE HOPE, ONE DAY.... FOR SURE!

April is PD Awareness Month....please just get to know us

APRIL/15


One just can not go on Facebook, and not be made aware of the variety of charities seeking to bring awareness to the cause.  This month, April, is dedicated to Autism, and Parkinson's awareness.  Both close to my heart, but Parkinson's being the one that I live with each and every day.

You will notice an influx of facts, research opportunities, and current statistics.  What I want to bring to you are some of the personal issues that a person with Parkinson's (PWP) ,must deal with daily.  I present these, not to seek sympathy, rather renew how you envision a PWP to be.

*It is not necessarily a right of passage for the elderly.  Generally the assumption is that the average PWP will be in their 70-80's.  Much like Dementia, right?  I was diagnosed at age 47, and have since met people as young as 21 carrying around this burden.  Age is not a factor.

*Heredity is not a factor.  Many PWP do not have a strong lineage of Parkinson's Disease.  Personally, I have no knowledge of a  blood relative to have been diagnosed.  From my own reading and research, this is not uncommon, and environmental factors such as prolonged exposure to pesticides, has been one area of study.

*Parkinson's means a person tremors.  I was finally diagnosed when my right hand tremor became evident, and caused me to experience difficulties in hand writing and fine motor control.  But once you receive the right medication, the tremors are the least of your worries.  Some days it may be nonexistent.  This of course, is dependent on your stress levels, I find.  The shaking movements of Michael J. Fox, are the symptom of medication, rather than Parkinsons.  This is called dyskenesia, and can be expected to experience this as medication dosages are adjusted and increased.  There are also people who never experience tremors.

*Slow down.  The Specialist explained to me that life would be slow.  And that basically sums it all up.  I am slower to move, to get organized, to speak, to process my thoughts.  Please have patience.  Trying to get my wallet out of my purse, grab the cash out of the wallet, be handed back change therefore having to return the money to my wallet, wallet to purse....takes forever.  I feel the time creeping along, as I do the frustration of levels of people behind me.  After all, I'm only 50, and show no outwardly signs of an illness.

*I have discussed the deep rooted feelings of apathy.  I often want to join you for a coffee, go out with friends for an evening, or go away for a weekend.  But apathy kicks in, and I not only have the apathy to forge through, I suddenly have the anxiety developing that will combine to make me turn down that lovely invitation.  I want to....I think I do.  Apathy makes me feel....nothing.  But in my head, I want to go out, socialize like I use to.  But I am only feeling pressure.  It seems to be better that you come to visit me.  You can depend on the fact that at least you know for sure....I will be home.

*The anxiety comes from a multitude of things.  Being slow in a fast moving world.  Having to follow and participate in a conversation when my brain is throwing up blank walls in front of my thoughts.  Completely empty white boards in my brain when I feel the pressure to give an answer or response right away.  The anxiety that I will have to take my medication on time, and hope it kicks in when I need it to.

*Fatigue is beyond comprehensible.  It is just not a normal way to live. Our sleep patterns are distorted.  I, for example, go to bed around 1:00.  I will sleep until 8:00, if I am lucky, wake up to take my meds, then head back to bed until 11:00.  If I don't follow this messed up routine, I will be far too exhausted to participate tomorrow.  In anything.  My routine is successful if I stick to it, but life isn't always that forgiving, so days when I have to remain awake throughout the morning, will impact the kind of day I will be facing tomorrow.

*Disruptive sleep is usually due to the rigidity the seeps through my bones  I take my medication every four hours to help alleviate the stiffness, so to sleep for more than four hours causes my body to, in essence, lock up. My body does not shut down, it tremors inside, and when I lay down, it is as if I want to jump out of my skin.  So, as a result, I have come to depend on sleep medication.  It becomes a vicious circle, as this adds to the fatigue.

*Lately, I've been receiving comments that I am quiet, or look unhappy.  It is a struggle on some days to communicate verbally.  And my face is getting that, "mask", that stone face look that I am not aware of.  These things I need to work on, so please be patient and know that I am present....

*Finally, if I had to share one important bit of information with the world, it would be not to pity us....rather, be patient with us.  When we speak, move, and think, remember that it all takes great effort, so your patience and support is what will get us through the rough spots. 

This April, let Parkinson's Awareness into your life.  Chances are, you will know someone in your life time that will be diagnosed, a family member, a friend, a co-worker, perhaps even yourself.  Knowledge goes a long way to assisting that person in functioning as best they can, on their good days, and their bad days.  So be aware, and spread the word.

April is for PD..... and a multidude of other flavours

April is Parkinson's Awareness Month.............

and Autism Awareness, and Cancer Control Month, Stress Awareness Month and Alcohol Awareness Month,  Sexual Assault Awareness Month and Occupational Therapy Month.  

Which disease is your flavour of the month?  And I wonder why my local newspaper  will not address  my request for. a Parkinson's Awareness promotional spot,  in April.  We just have far more diseases, than we do months in the year.

Parkinson's is a lonely disease at best.  Hard to diagnose, it has often not got its grips around its prisoner, until late in life.  Hence, it is one of those diseases, like Alzheimer's, that in ones mind, only affect the elderly.  It is part of the ageing process.

The other day when I was on one of my few outings, I saw a young teenager with a white t-shirt.  It had a picture of a gray ribbon that said, Parkinson's Awareness, and beneath, "I'm wearing this for my Grandpa".  At first glance I smiled, and thought, "Yes....very nice".  Then it occurred to me that, that was the general misinformation that I have been banging my head against.  Pd=grandpa=gray.  Parkinson's has young people in its grip at this very moment, and most of us are unaware of this as typical....or just plain fact.

Young Onset Parkinson's, affecting those 10% diagnosed before the age of 50, does not  jump to the forefront of ones mind when they think of Parkinson's Disease.  Typically when one is diagnosed, they realize that they may have a;ready had the symptoms for many years .  The symptoms that are first indicators are not outwardly visible, and as such, a tremor is usually when one seeks health care. 

Some of the non-motor symptoms that often pre-date tremors, are difficulties with memory, word recall, organization of thoughts, loss of smell, difficulty making decisions, depression and anxiety, to name a few.  Only when this whole picture is combined with the tremors, balance issues, and gait, rigidity,  and other physical disturbances, is it generally considered important enough to refer to a Neurologist or Movement Disorder Specialist.  In the mean time, many of us suffer years of battling the non-motor symptoms independent of each other, and  in solitude.

Even with awareness of Parkinson's through the familiar faces of Michael J. Fox, Muhammad Ali, Linda Ronstadt, and most recently, Robin Williams, the first thing that comes to mind is the shaking.  The tremors.  Parkinson's  is much more than that, and that is why education is so important.  These famous faces are not faces of the elderly.  So why are PD is nowhere near the forefront of other diseases, such as Cancer, or Autism?

Well....just look at the month of April.  Packed full with awareness seeking diseases, syndromes, and the likes.  In my local paper, we are more likely to see April as Autism month, or Cancer Control month.  I guess Parkinson's Disease is just plain old vanilla when it comes to flavour of the month.

Chats and Forums....real life Parkies!

  Feb. 19/2015

Once you have your diagnosis, the next step is to research the disease.

Like so many others, this meant hours upon hours online....searching the disease, the symptoms, the latest research, and most likely, a chat room or forum with other, real life Parkies.

We have all heard the warnings of being online with crazies, identity thieves, and creepers.  But if you are lucky enough to get into a good group, it can provide a wealth of hands-on knowledge, comfort of kinship, and people with whom you realize, get it.....there are others out there who just really, get it.

The first group I joined was, Patients Like Me.  I literally have no idea how I stumbled upon it, but at the time, it was irreplaceable.  The site itself consists of gathering information of members to aid in research and development to a wide range of diseases.  Diabetes, Fibromyalgia, Depression, and Parkinson's Disease, to name just a few.

The power of Patients Like Me, lay in the gathering of information which gives members charts and lists to monitor their symptoms and medications.  They can bring these to their doctors to help in tracking progress.  The greatest component of the site, hands down, is the Forum.  You can go into the specific forum of your disease, and voila.....there are post after posts of topics related to your disease.  Behind these posts, are people who have shared questions and opinions, and return again, and again, and form a group of familiar characters with which you will develop an inexplicable bond.

The forum lends itself as an outlet to rant about your symptoms, share information on coping with your symptoms, and real people who have experienced what your journey is about to present to you.  For example, because Parkinson's is a progressive disease, the long term affects are always on your mind.  In the Patients Like Me forum, I came to learn and understand that Deep Brain Stimulation (DBS), is an option.  I met others who had gone through the surgery, and freely discussed the pitfalls, and success', and even took pictures or videos with which they freely shared.

Patients Like Me, provided a forum and group of like individuals that I could bond with on a journey that no one else I knew, personally, was going through.  After 1 1/2 yrs on that site, I had gained trust in members and saw the very few that would come into the forum with bad intentions.

From there, I joined, Parkinson's Online Chat.  Set up in chat room style through Facebook, it is essentially another place where experienced information is shared, and comradery,  apparent.  It's members number 5000 plus.  But, there are always the regulars ready to share and inspire.  There will always be a few that sign in with intentions of selling "snake oil" so to speak, or just to show their stupidity, but the regular members are quick to notice and block them.  It becomes quite easy to spot someone who really has no interest or understanding of Parkinson's.  Now these are very far and few between, but unfortunately, do exist.

I encourage everyone to find a group online specific to their needs.  For example, I found that the group I joined had patients and caregivers to PWP (People With "Parkinson's).  And being a very difficult road for the Caregivers, saw a need for them to have their own space to speak freely.  I mean, really....we, PWP, aren't always the easiest people to care for.  Hard to believe,....I know.  So, with that concern, my own wonderful partner in life, and my designated caregiver, set up his own site, Caregivers for Parkinson's.

These sites, when one has not experienced them fully,may  seem somewhat flaky, I'm sure.  But with my hand to my heart, I swear, it is one of the greatest of all supports you will encounter.  I jokingly say, they are open 24/7, and truly they are.  It is not uncommon in someone with Parkinson's to experience unsettled sleeping patterns.  Can't sleep?  A specific new symptom has arisen?  Feeling down?  Sign in, and you will find immediate support.  You will make some contacts for life...people whom you may eventually even refer to as a friend.

So, I guess I wrote this to try to impress upon you, what an incredible sense of support you can receive from these groups. Spend time in a group, sit back and watch, and when you are ready to get your feet wet, just jump on in!  Ask, question, and learn.  I can not imagine life without this source at my finger tips.  Me....who still considers herself, Technically  Challenged,  consider my favourite Forum and Chat Room, as one of the most important aspects of my health care (next to my doctors, of course). 

Now, speaking of the computer, being Technically Challenged, a side note......my next appointment with my Movement Disorder Specialist is via Teleconference....like is that crazy, or what?! 

Parkinson Society Canada's "The Struggle" (Public Service Announcement)

 



Jan. 27/2015

January in Canada, is the beginning of Mental Health Awareness Initiatives  In the last few years, it has gained recognition through the Bell, "Let's Talk" . The main focus of this initiative is anti-stigma.

What has made this such a significant initiative, is the on going promotion by a Canadian Olympian, Clara Hughes.  She has spoken widely, of her personal journey of Depression.  Along now, with other spokes people that have come through, such as Howie Mandel, there is discussion about mental illness and one no longer bears the shame of living the disease in isolation.

The same thing needs to be done with Parkinson's.  Awareness, education and the fight for a cure has been awakened in the United States, by Michael J Fox, and his foundation.  What we need in Canada is a face, a personality, someone like Clara Hughes, or Michael J fox, that will promote awareness of this disease as not just being one of shaking and slow movements.  We need to discuss and educate on the non-motor symptoms that are so prevalent to the disease, but are not identified as part of Parkinson's.

An initiative that promotes awareness of cognitive dysfunctions, such as poor memory, recall, organization of thoughts, speaking, apathy, and depression.  Symptoms that often appear many years prior to diagnosis of Parkinson's Disease.

The Ontario Government is currently starting a PD Ambassador Program.  People with Parkinson's are trained in presenting current needs and expectations to their local Members of Parliament.  This is a start.  Hopefully, from this, the gap of representation of PD awareness will become smaller.

My only hope is that a very recognizable personality, such as Clara Hughes for Mental Health, will step forward and enlighten our country about Parkinson's Disease.  The numbers of diagnosis is ever increasing, and in one's lifetime, I am sure that you too will know, care, or love someone that will be diagnosed.

April is Parkinson's Awareness Month.....perhaps this year, an awesome someone, will bring their enthusiasm, personal experiences, and awareness to the disease.  Someone like Clara Hughes, someone who will aid in shutting down the stigma that PD is for the elderly.  Someone who will make us aware that this disease appears long before it is diagnosed.  Someone who will also inspire us to raise money for.a cure....yes....a cure!

Canada needs someone....