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..

Bye, bye summer....I'll miss you

Sept. 21/2014

Today we celebrated my Dad's 81st birthday.  It is so hard to believe that a year has gone by since we held his 80th celebration.  And, to top it off, it is the last day of summer....officially.  And what a summer it has been!

Having Parkinson's daily is difficult at best, and horrendous at worst.   But as I take in the larger picture.....for eg., the whole summer....I can also add that Parkinson's still allows me, at this point in time, the luxury of enjoying my life as much as possible.  This past summer proves to me that I can still have a full life.

The summer began with a Family Reunion that was 35 years in the making.  I come from a large dutch family, where my father was one of 11 children.  In earlier times we would have a yearly get-together.  But as time goes by, the 11 multiplied to 22, and then would multiply to 48, and on, and on...and on.  At some point, it became too difficult to connect.  So, I took it into my own hands to set a goal that I would bring back the Family Reunion while I was able.  I began with a Family Facebook site, connected with at least one cousin per family, and encouraged the sharing of memories through posting old pictures, and retelling stories of bygone days.  What a perfect hook!  This allowed me to set a date, make arrangements at a park, and prepare the Family Reunion that had been lost over 35 years.  My goal was to have 100 in attendance.....there were 65, and once over, and the event shared, it was such a success that 100 will be no problem to reach  next year..

In hindsight, what was I thinking?!?!  What a daunting task for a healthy individual, let alone one living with PD.  But it came, it went (perfectly at that!), and what a huge success it was....and I lived through it ....and I survived!  There are still many possibilities available to me at this point in my illness, that if I truly want to achieve....I will.  Looking back, other than being exhausted for the week or two following, I did it!

The next thing I needed to get through was my son's wedding.

I have two sons, age 22 and 24.  My oldest son became engaged, purchased his new home, and then wed, all within this past summer.  Typical of a mother, I carried the worries of my child.  Will he be able to afford a house, will he find a house, and how on earth will he get everything done in time for the wedding?!?  And of course, stress heightens PD symptoms.  So, I had to let go, step back, and know that my mother in heaven, would take on the challenge as she always had, and things would all come together with her help..  And so....on the third weekend in August, my son was married, and held the reception in his new back yard.  It was a beautiful day, my other son and his girlfriend were in the wedding, my dad and I attended along side my ex-inlaws and ex-husband, and everyone actually had a wonderful time.  Parkinson's again, did not keep me from one of the most important events in my life.

I did it.  I made it.  I survived it.  The summer of 2014.  Sure my Parkinson's has progressed, but it has not yet swallowed me alive.  Did I mention that I turned 50 this summer as well?!?  So, being 50, and living with PD, has definitely slowed me down, but as sure as the leaves are falling, and winter is on the door step, the warm sunny weather will be back....and I will have to attack the Second Annual Re-reunion yet again.  I did it...I can do it....I will do it.  It is only 9 months away!

One of the Most Difficult Jobs...ever...

https://www.facebook.com/groups/1410983622452317/

  




September 13/2014

There is a job that is very under appreciated, underpaid, rarely recognized, and yet, one of the most important jobs that can be bestowed upon someone.  That is, Caregiver.  Caregiver to an aged parent, a chronically ill child, or a beloved friend who needs care.  It is a job that one takes on, because their heart tells them so.

I wrote in an earlier post, that my caregiver and I had gone our separate ways.  About 2 weeks ago we reconciled, and life has become bearable, once again.  I knew my heart missed him, what I didn't realize was how much my body and health missed him.

I bore the title of Caregiver, twice in my life.  Once, when my mother had Leukaemia, and the second time when my Ex-husband was diagnosed with Parkinson's.  Both times, I just took on the role.  I was an only child, and as my Dad had health issues of his own, I became the one to turn to.  Years later, my ex would be diagnosed PD  about 5 years before my diagnosis, and there was no question as to who would be Caregiver.

The term, Caregiver, is just that....out of "Care", and definitely, "Giver"....give and give until sometimes you feel there is nothing left in you.  So with reminders of my own days with this title, I was more than a bit hesitant on depending, myself, on a Caregiver.  It is a huge burden....although I know I did it out of love, and with complete determination, it seemed too much to pass this torch on to someone else, on my behalf.

5 years ago, I met and dated a man who stole my heart.  We have since, shared a wonderful life, blended our families as best we could,  and created a warm and loving home.  When I received the diagnosis, I gave him the opportunity to run....and run like heck!!  But he did not, instead, he took on a new role....Caregiver.

His role is more important than I had even realized when I had taken on that role.  Being the one cared for, and also having been one who had to give care, I knew all too well what may lay head.  But with his head held high, he attended doctors' appointments, educated himself about Parkinson's, and is always there to assist with all my needs.  He knows full well that this disease is progressive, and it still has not scared him away permanently.

Having a Caregiver, when one has a chronic, progressive disease, is definitely a requirement as I soon found out after our 6 week separation.  Of course I'm strong willed, and would make my way through this new life of mine....but it would be at the expense of my home, my friends, my family, my pets, and my independence.  I could not, as much as I wanted to deny the fact, keep up with the daily expectations of living day to day., alone.   The struggles included, having to get out of bed, face the house hold chores,  feed the pets, do the laundry, make the meals, do the groceries, and still be able to take my medications on time, have my naps when required, and not be able to deal with the day as my health is challenged.  To be able to stay in bed when rigidity wants to take over your body, to be able to take my time until medications kick in, and to be able to look presentable because the laundry has been done, may seem insignificant at first.....but is truly a daunting task, day after day.

One of the most important things he does for me is provide patience and understanding.  When I am frustrated trying to apply my makeup with a shaky hand, and I throw the towel in, and go without....he tells me I'm beautiful.  On weeks when I am house bound, and the four walls feel like they are caving in, he reminds me that we have a home with four walls.  When I break down in tears for no reason what-so-ever. he lets me have my time, then tells me its time to get on with living.  He has tried to fully grasp what I go through by reading my blog, PD articles, and research.....so when I become overwhelmed by little frustrations, he helps me sort through my feelings, and get back on track.

He has shown me the importance of having a Caregiver.  Rather, he has shown me the importance of having a "Carepartner"