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....



                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

Arm yourselves.....raise awareness!

December 2014

It takes a country to raise awareness.  It takes you, to educate your friends and family about Parkinson's Disease.

This past week, with Christmas drawing near, my Forever Friends (3 incredible women I met at University 32 years ago) met for our annual dinner "out".  Each Christmas we get together to celebrate a little cheer of the holiday season.

It just so happened, and not by chance I suppose, that I was a little more shaky than usual.  Being out of the comfort zone of my home tends to do that to me.  So, as we walked from the car to the restaurant in the dark, one of the girls grabbed my arm.  I tend to lose balance very quickly in the dark. 

We were seated, ordered, and began to chat about everything since our last time together.  It gets very frustrating as someone with PD, to follow and contribute to conversation with more than one person.  But, my Forever Friends are aware of this, so pause when necessary, wait for me to contribute, and recognize when I am floundering.  But without emphasis on the situation, we continue to discuss everything that comes to mind.

When dinner was over, the waitress asked us if we wanted a big bulky foam box to take our left overs home.  Right away I responded with a , "No thanks, I'm fine".  With my plate still half full, one of the girls reached over and emptied my plate for me.  She knew without any cue from me, that I just did not want to battle the box, and make a mess.

My Forever Friends, like my family, have been educated about the daily struggles of living with Parkinson's.  As soon as I was diagnosed, it was my goal to spread awareness of the disease, its symptoms, and methods used to assist in daily living. 

I blogged, I wrote, I spoke, and I facebooked about Parkinson's Disease.  I shared information, and read articles and books to and with them.  And because I insisted on spreading the word, they "GET it".  My friends knew how to assist me without asking, give me time when needed, and grab my arm when the situation called for it.  And I did not have to ask or direct any of the uncomfortable situations.  They just got it.

I just wanted to take this moment to remind those with Parkinson's how important and life changing it is to raise awareness of the disease, with those they love.  Everyone that loves you, will learn and ease what could be uncomfortable situations. 

So write, speak, or sing if you have to.  Spread awareness of your disease, and how it changes your life.  Those who love you, will support you in ways you never imagined. 

I should not have been surprised at the wonderful comfort I received that night, after all, I didn't name them, My Forever Friends, for no reason.

Be strong and align your army against this disease.  The battle can be easier when everyone knows the enemy.

Apathy...did I mention that it sucks?!?!?

v  Oct 31/2014

Waking up.  I hate it.  Worst part of the day.  I am sore, rigid, everything feels stiff, and although I have been asleep for 7 hours, I feel exhausted.  My feet feel like they have walked hundreds of miles.  But.....I HAVE to go to the washroom. 

Actually, it is good that my bladder wakes up about the same time every morning.  It is like my natural alarm clock.  Sometimes the only reason I actually get up. I guess this is the, Acceptance, stage. 

I also need to get up to get my medication into me.  This will help all the aches and pains, and get my mind active again.  So, I do get up, have a tea and toast, take my pills, and head right back to bed.  I usually don't get up again for about an hour.  I look at it like having two mornings per day.

This past week, though, that old beast called, apathy, set in again.  I try to explain it to others, but it is hard to really understand.  People assume that means I am depressed.  No, depression is quite different.  It is dark, reaches deep, and envelopes you. 

Apathy, is not like that.  I have previously described it as, "emotional flat lining".  I feel like I am not sad, nor am I happy, I just....am.....nothing.  When I am feeling like this, I don't like to carry a conversation or engage in any type of thinking that would require concentration. 

That doesn't sound too serious, does it?  Well, to me it is one of the worst symptoms to deal with.  I have zero motivation.....zip....nada.  I recently got back into my art work, and writing, and crafting.  I have a new dog to take for walks, and friends who want to get together.  But I will not "feel" any of it.  I want to do these things. bit I just have no interest in doing so.  Does this make sense?

So after my two mornings, I get showered, dressed, and sometimes put on makeup.  Then I sit.  And nothing comes to me.  No desire to move.  My care partner is wonderful for trying to help get me motivated, but it just isn't in me sometimes.

One thing that I have come to depend on is the fact that "this too shall pass".  Eventually I will pull myself together, gather my wits about me once again, and kick apathy to the curb.  How long it takes, is still up for debate.  This is day three, Halloween at that.  Soon I will be "ooing and awwwing" the wee trick or treaters.   It will feel like a chore, but perhaps it will jump start my emotions, so that I can feel again tomorrow.

In my mind, as I sit and write this, I am encouraged.  I have had no motivation what so ever to blog, and well, here I am, doing just that.  Perhaps the apathy is lifting once again,...Tomorrow is a new day, and I am actually looking forward to it.  The flat lining may be ending....or it may not....but tomorrow will come regardless.  That, I can count on....and perhaps I will even enjoy it.

Sometimes ya just gotta laugh...

Oct., 2014

Sometimes, you look back, and you just have to laugh.  Well....the week didn't start out that way.

I woke up, as I usually do and stretched in bed for about 10 minutes.  Then, as always, I slowly got up and sat on the side of the bed until the room stopped spinning.  Well....it didn't stop this time.  I got into a standing position, and used my hands against the wall to keep me in a standing position.  I felt like I had a hang over, but didn't have a chance to enjoy the party first.

I walked to the kitchen, literally banging off the walls, door frames, and furniture.  I reached the dining room table, and plopped...literally plopped down onto the nearest chair.  What the heck was happening?

Throughout the day I continued to experience this spinning of the room, upon sitting, standing, or laying down.  It reached a point where just moving my eyes to a different position would send me into spin mode.  There was something wrong.  My wonderful, loving caregiver helped me to the car, and we drove to the Urgent Care.  Diagnosis.....Vertigo.  Vertigo, on top of the balance issues of Parkinson's Disease.  Wow, this was going south...real fast.

To reference my Movement Disorder Specialist...my life with PD would be slow.  Well, heck, life with Vertigo and PD was at a total stop.  I took my medication as prescribed, and walked along very cautiously trying not to bend down, or make a sudden movement.  For the entire week, I did this well....well enough to make it through the day.  Soon the spinning in my head lessened, but had not fully disappeared.

By the end of the week, the walls were caving in, so I decided to take a walk.  Autumn is my favourite season, and I had yet to walk around the block taking in the different hues of yellow, orange, and burning reds.  I decided to take Bella, my wee Yorkie, with me.  Around the bend of the second block, everything went awry. 

I was walking with Bella across a patch of leaves that lay on the sidewalk in a little pile where water had saturated the ground.  The long and short of it....I fell......I lay sprawled on the ground, and Bella's leash was not in my hand.  Now....it is well documented by my sons, that I fall in slow motion.  They laugh and tell the tales of mom's falling while a deep slow voice is saying, " N...o....ooo...ooooo".  Cute. ( They watch far too much TV.!)

So, back to my walk..., I recall my foot slipping across the wet leaves.   I let go of the leash as I knew I would need my hands to support my fall.  I remember thinking...my butt is going to hurt!!  But in some twisted manner....literally, I managed to go forward, landing on my knee, and falling to my right side, onto my elbow with my shoulder into the fence.  Some how, I slipped ..forward?!?  To this day, I still can not figure out how I landed in that position.


Then....Bella!!  I glanced over my shoulder to see her running in the middle of the road in circles!  This big pink handle was chasing her.  You see, Bella's leash is one of those with the pull back tension spring which had suddenly kicked in and was headed right back to her..  With all of her little might, Bella was determined to out run the handle

So, there I lay twisted on the ground, while my Yorkie was running in circles, for her life.

If anyone saw, they obviously were too embarrassed for me to help, or....couldn't stop laughing long enough to lend a hand.

I managed to get to my feet, pants covered in mud, knee bleeding, and began to chase the handle of a leash, that was chasing my Yorkie.  Each time I tried to step on the handle (remember, I still had vertigo so was having difficulty bending down), the handle would stop initially, but, Bella would run, and the handle would slip from my foot, sending it flying again....and, sending Bella, running like heck, again.

Although it felt like hours of running in circles after the leash,  that was after Bella, I managed to step on it and bend over to pick it up.  All without falling   We limped home, Bella damaged for life, and myself, trying to figure out how I had slipped..... forward.??? .

Well, Bella was not scathed....she continues to enjoy her walks.  And me....Vertigo has calmed and I have learned that I should never leave the house without my trusty walking cane.  When I look back....I just have to laugh.....at myself, and my beautiful little Bella who was  running for her life..