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...

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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"

9/11 and Garbage Day.....I do Remember....Eventually.

  Sept 11/2014

Today is marked the13th year following of 9/11.  I remember the day well....I remember where I was when I first heard the news, .....I remember getting to a tv , as the second air plane crashed into the second building...I remember feeling frightened about what was to happen next..I remember all the who's, and whats..I remember wanting to go home and grab my two boys, and not let go.  Traumatic, terrible events that we would view live,and  would ingrained into our minds forever.  be

Pictures in books, the newspapers, and on line, captivate and yet sadden our hearts and minds.  Today we remember that horrific day, and although we may not have been directly affected, are as sad and enraged as those who had been.  It affected a nation...the world.  Living in Canada, it felt like it was just next door, happening to our friendly neighbour....

How is it possible to remember these events....so distinctly, and yet, I can not remember if the garbage and recycling go out this week, or did we do it last week?  I am not trying to make light of 9/11 by any means, rather I am struck by how something that occurs every two weeks, and has for the last 4 years, like garbage day, can just completely drop from my mind.

I began this blog by  recalling the images, feelings and emotions of 9/11, as an example of an event, 13 years earlier, that can come to my mind so quickly, with very little effort. But struggling to recall a reoccurring, weekly event in my own personal life, although insignificant in comparison to 9/11, leaves me baffled.  I eventually figure out if it is garbage week, but not without a lot of visual cues (Duh...the neighbours have it out!), to, trying to recall a related incident (Oh yes, my son asked me if 5 bags could be put out last week).  Eventually I will remember if it is garbage week, or not, but not until  I am fully frustrated with myself.

9/11 and garbage week....strange comparisons even in my own mind.  But my point is that daily living can become daunting when one must struggles with a Neurological disorder such as Parkinson's Disease....but remember, I eventually do.   9/11....I can remember all the sensory details I had experienced, and yet struggle to remember the weekly occurrences.  Remembering....that is the key word.  I would and should be more afraid if events such as 9/11 were unable to be recalled.  So, really, in the end...does it really matter if the Garbage truck flies by while the garbage bags sit on my porch?  What really matters is that eventually I remember....events that are larger than life, to miniscule, daily recollections. 

Today I remember that tragic event 13 years ago, in detail, recalling all the senses through the experience, tragic, surreal.  But ask me if I took my meds on time, fed the dog, or put out the garbage..well only time will let me tell.

Aug. 1/2014  Well....um.....huh.   A sad break up, or a time to regenerate?   My caregiver, my other half, and I have mutually agreed to go our separate ways.  We have left the situation in mutual respect and admiration.  Did it scare me?  Hell yeah!!  I certainly didn't care about the material "things" we had accumulated, and who was to have what.....it was more like.....OMG!!  Can I take this PD adventure on my own?!?!?!

My caregiver was a very social man.  Loved to be with people, talk, and just have fun with anyone and everyone.  Yes, that certainly is quite the opposite side of the coin that my road would be leading.  PD was not the reason for our break up, though, most certainly, it entered into the accumulation of factors that ended our relationship.  That damn Parkinson's Disease just keeps taking, and taking.

When I had cancer, I had tremendous support.  The world knows about cancer.  Everyone knows someone who has or, has had, cancer.  There are support groups, home care, and an incredible number of other services available.  With Parkinson's, particularly, young onset, one feels very alone in their struggle.  My medications control my tremors, for now.  So there are very little outward signature symptoms that one would automatically connect to the disease.  Therefore, to have someone fully understand what a person with Parkinson's faces on a daily basis, is next to impossible.

The caregiver, who attends appointments and groups, is given a basic understanding.  Having lost that, yes, one could say I am a little apprehensive as to what the future holds.  But, I'm not giving up.  Just as my "awe" moment awakened me, so has this.  I have the time and the opportunity to plan my own routines, and actually force myself to do the things I want to do.  I will have to fight through the apathy.

The one single factor affecting a Parkinson's patient is stress.  Of course we live in a world where stress is unavoidable.  But I am able to establish myself, in the best means possible, to avoid those every day pressures.  The every day stressor, such as the lawn needing to be cut but the lawnmower is dead....well, those are somewhat more manageable.  I call someone in....out of pocket....ut oh...that leads to a bigger stressor...money management on a disability income.  With my caregiver, I shared these frequent stressors.  On my own....well, we just have to manage them day by day.

So, in the meantime, I am learning to cope, hour by hour.  I try to live day by day, but sometimes life just keeps giving you roadblocks...so hour by hour is easier to live by.  See that...it has been an hour since I began this blog....no stressors.  That makes for an amazing accomplishment!!!