Taking a Hobby One Step Further.....................

Parkinson's, not even the tremors, should stop you from enjoying life.  Activities and hobbies that you have found to be an outlet to your creativity.  It may not be as intricate, or as polished and detailed as you have become accustomed, but do not fully give in, to Parkinson's....give up on what you enjoy.

I have always been a crafty person....painting, looming, sewing, and just plain crafting, have been the happy place I turn to.  I fell in love with watercolour painting, taking lessons, and bracing for the time to spend on expanding on my skills.  Then, this tremor took over my right hand....my newest love became as frustrating as heck.

For a bit of time, I sulked.  Afraid of attempting to do a project for fear of failure.  But it wasn't long before I decided there had to be something to take its place.....Google and Pinterst, here I come!!

That was it!  Mixed Media Journaling!  A chance to paint/draw/craft with sheer desire, very loose on direction and theory.  It was even more fun when my partner in life, Frank, joined in.  We would challenge each other daily to do something greater, or more unique than the other.

But my interests, rather desires, come and go and I thrive on change.  What would be my new art form?  Well....shazam!!  I was introduced to the culture of Steampunk in the Victorian Style, through Netflix.  I watched how Steampunk Communities were evolving around the world.  It grabbed my interest because it was re-imagining, or re-purposing every day items.  As any true Steampunker will tell you, that is just a drop in the bucket to what the culture embraces....but, to me, it was something artistically achievable.  Tremor be gone!...or still be there...I could at least work with it.

So began my latest crafty adventure.  Taking used, broken costume jewellery and reinventing it with Steampunk flair.  I have even taken it one step further....opened my own Etsy online store, SteampunkeryCo to feature some of the pieces I have created.

Will I become rich?  I don't foresee that, unless you mean richer in experience....then, yes, I am becoming a Billionaire.  I won't let my PD rule me....and I won't let my tremor win, rather I will continue to let it seek alternatives for me.  There are many ways and means to enjoy life....you just have to find it.

Now, let me shamelessly promote my latest adventure..............

www.etsy.com/ca/shop/SteampunkeryCo

YOPD Virtual Group Meetings....what a breakthrough!

2016, just sparkled!

It has been some time since I took to blogging.  The year seemed to pass by in a flash....so many things to do, new things to experience, and just the daily things that sometimes swallow up time.

My focus this year in the area of Parkinson's Disease, seemed to take on a virtual life all of its own.  I began the year with attending my MDS appointments through TeleMedicine.  I would go to the hospital in a nearby town, where a nurse took information updates, faxed to my Doctor, and then met with my doctor through the computer flatscreen.

For the most part, this was such a stress free, convenient way to connect with my MDS , who had moved his practise farther away due to government funding cutbacks. So this was ever so convenient. Until....one specific appointment arrived...., and was cancelled after I waited 40 minutes. A blackout in the Doctor's building.  I was re booked, and returned 2 weeks later.....but a nurse was unable to make the connection, so for the second time, I had to rebook my appointment.

Technology, though very convenient, is not perfect.

My second huge break in technology on line, came to me from Diane, a woman who I had made contact with through the Parkinson's Canada Association.  I had turned to her last year in regards to finding a local chapter of a Young Onset Parkinson's Disease Support Group.

In a renewed excitement, she contacted me this year about facilitating an Early Onset Virtual Support Group.  It would be the first of its kind in our locality.  Wow!  What an idea....bringing support groups to the comfort of your own home.  Of course, I was in....without a doubt.

A group had been established on the East Coast of Canada by a gentleman named Peter.  I was invited to sit in on a meeting through a on line application, Zoom.  Forgetting the hour difference, I decided to wash my hair, shower, and while I waited, pop into the Zoom room to make sure I was connected.  With my hair wrapped in towel, I clicked my link....and surprise!!.....there I was on one small screen with 7 others, and the facilitator, on the main screen.  Oh my!!  The link worked all right, but I hadn't taken into consideration the hour time difference between the provinces.

I was welcomed immediately.  The group began their session by updating themselves with a "check-in".  It was a great way to share experiences of the past month, including symptom or mediation changes everyone had experienced.

After sitting in on a couple of sessions, I had a good grasp of how the meetings were run.  Diane, from PD Canada and I had done a run through on Zoom, and felt comfortable enough to begin our own Virtual Chapter.

To date, we have 19 members.  It is such a pleasure to be able to get comfy, throw on pajamas or track pants, and just hunker down for a delightful evening of sharing and learning from people who are going through the same things you are.  And each time we meet, the connections and kinship just continues to grow.

Last month for example, one member mentioned they were taking Music Therapy.  This peaked interest for many, so using the member's contact, I was able to book a Music Therapist to speak with our group at the January meeting.

For most of our members, it is one of the first support groups they have been able to attend because of their location, mobility, or other factors.

It is hoped that the success of the East Coast group, and now Central Ontario;s group, will be the start of Canada wide virtual groups.  So, although I sometimes get frustrated with keeping up with the ever changing technology...it definitely can improve the ability to meet and open a whole new world of knowledge and social interactions that would not be an option otherwise.

As I believed from the very beginning of my diagnosis....arming myself with knowledge would be the best way to fight this disease,  Knowledge being power...and supporting others to feel more powerful, well, that is what it is all about.  Taking control of our own PD helps us to come to terms with our reality.  Having others experiencing it with us, through support, is truly, a bonus.

Exhausting the Art of Communication, or rather, Communicating is Exhausting

Aug. 16/2016













Lately, I have had to face the facts.  Parkinson's Disease is progressive.  I must also face the fact that this is not always visible to those around me...even to the closest among my loved ones.

Since my diagnosis, I have entrenched myself in the world of PD.  I have joined online support groups, managed my own informational site, and follow the most current research available.  Through my blog, and my website, Parkinson's - Living UnSHAKEable, I have tried to pass on some of this knowledge, as well as personal experiences.

What I feel that I have neglected to demonstrate, whether in written word, or actions, is that my PD is progressing.  I try to humble myself by being strong, and showing only my brave front, but now I need to expose some of the invisible signs that PD has delivered,   And, it is not going away any time soon.

One of the areas of my concern, currently, is my ability to organize my thoughts, demonstrate some semblance of short term memory, and basically, socialize in a manner  which normally had been my strong suit.  Because this struggle is not outwardly evident, my interactions may often appear as distant, strange, a mixed message, or seem that I am disinterested.

This internal battle with my thoughts and expressions become exhausting..physically and mentally.  Even while writing this, I fear I am unable to get across , exactly what I struggle through.  I will try my best to recreate some of the internal dialogue that I work through just to carry a conversation.

When I am interacting with someone whom I am very comfortable with...usually immediate family, I am struggling to recall words, form them in a cohesive idea, and try to express it verbally.  Now, having been a teacher for over 20 years, this has never been a challenge....actually, it use to be a strength.

If at any point during the conversation,  I am thrown into a position to quickly respond or answer, my mind completely freezes.  I will have to stall, interrupt by saying that I have forgotten what I was going to say, or say what comes to mind, and chance that I will have the opportunity to correct myself at a time when the conversation has either stopped, or changed direction.

And that is what usually happens.  I will add my thoughts, finally, after the conversation has long changed topic.  Although this leaves me frustrated and embarrassed, I generally can laugh at myself, and allow the other person comfort in doing the same.  But I don't miss the fact that what I had just added to the conversation was randomly odd.

Generally, this predicament had occurred when I was trying to follow a conversation in a group, or with two or more participants.  Most recently, I have realized that this is occurring more frequently despite the number of people, or the closeness of our bond.  Other than my partner, Frank, if I am about to enter a conversation, I panic, and prepare myself for appearing disinterested, or just plain, "ditzy".  Does the panic cause this to happen , or does the panic occur because this happens?  I'm not really sure.  Chicken or egg....????

All I know is that this has become progressively worse.  As well, and just to add salt to an open wound, I have noticed that I actually freeze at times, and am unable to speak without stopping, swallowing, and non-chalantly taking a moment to proceed in what I was about to say.

This was first experienced last summer on a 3 day, BFFs, girl's cottage get-away.  Now how much more relaxing could that be??  I was joining, or beginning a conversation, and was about to contribute to it by using my son's name...Steven....and I could not get the name out of my mouth.  Steven...I tried again, and then again, and finally got over the hump by saying, "my youngest son".  That may not appear to be out of place or appear odd in just a familiar group, but with my very best friends, in easy going, intimate discussions, it sounded just plain weird.  I had to then break the conversation, and share with them what had just happened.

Just those two examples, and believe me, there are many, ,many more, I have realized that whether it be the strain, the fear, or amount of work it takes, I tend to keep conversations to a minimum/  It is exhausting, and embarrassing.  I now much prefer to listen, than participate.

 Socializing, even amongst my closest of relations, is such a struggle.  I hate phone conversations as it gives me no visual cues with which to prepare myself   As a result, I do not own a cell phone, nor do I answer the landline.  I leave that to Frank, who will prepare me by letting me know who it is, and that will usually lessen the stress of the moment.

Unfortunately, this has left me knowing that I am distancing myself , socially.  I am unable to mingle with the ease I once had, to simply meet, greet and engage in purposeful conversation.  My grown sons, who are building exciting lives, are dealing with the fallout, though, I don't think they realize it...yet...or perhaps they will after reading this.

As life goes, I don't see them on a daily basis.  When I do, i am so excited to see them, and want to hear about everything going on in their lives, that I fall short in expressing exactly what I am dying to discuss.  My mind becomes so jumbled with all the things I want to discuss, that I can't organize the thoughts cohesively, and it comes out in random spurts.  I notice the odd glance, or inquisitive look that in my mind appears as "where the heck did that come from?"  Or I make a simple joke out of it and allow them to think Mom is tired, or isn't fully listening.  In reality, I am checking every thought and idea and word that I am about to spew.  I just can't articulate everything i want to say in that one short visit.

Hopefully, I will learn some tricks or ways to manage these challenges.  This blog, this laptop, for example, has allowed me the best opportunity to express myself.  I can sit and type until I draw a blank, can stare onto the screen until the word or thought comes to me.  I can edit, and rearrange my thoughts.  I can take my time and revisit what I have expressed until I feel I have articulated it, to the best of my ability.

In Sept., I have been asked to be an administrator of a Virtual Support Group for Young Onset PD'ers,  in my region.  To do this, I have met with the local Chapter Parkinson's Association Coordinator, via phone and virtually online.  Discussing, preparing to run these sessions that will last up to 3 hours, has left me completely wiped out.  This is how I came to understand  that communicating has become very exhausting.

So, although my PD is progressing physically, by requiring a cane to walk a distance, more "off times" with my medications, more tremoring when under stress, and more prevalent rigidity and other familiar motor symptoms, it is the non-motor symptoms that have begun to take it's toll.  It is this struggle to communicate, think, verbalize, socialize, that I am afraid occurs to be as great a challenge as the common physical symptoms.

Those of us with Parkinson's are not disregarding conversations, being unsociable, avoiding communicating, or not wanting to be with you.  We are struggling with communicating effectively, to let you know we WANT to socialize, discuss, debate, respond effectively......we just require patience and understanding.

 Being human, means being social.....we are human, we want to be social.  Just help engage us, and help us accept that we can still participate in your life.....we want to....we are just much slower in the manner with which we are able.  As frustrated as you are with us, we are ten times more that frustrated with ourselves.

So, with that being said, I hope I haven't just added to the confusion that I feel within my own head.  Non-motor symptoms of Parkinson's Disease are often not discussed, but these can be some of the worst hurdles to confront.  We are the same person, just trudging along at a much slower pace.  Encourage, be patient and include us....we may be a shell of who we once were, but our hearts and feelings haven't changed.

Communicating is indeed exhausting....fatigue has set in....oh , the fatigue!....well, that is a whole other topic for another day.

PD Awareness Blitz's...Are They Enough?

March 15/2016










April is Parkinson's Awareness Month.   So, why in March, am I already preparing myself for the barrage of PD information covered in beautiful coloured tulips, and pretty grey/blue ribbons??  Why am I dreading those happy, fun filled pictures of the variety of  fund raising efforts?

Perhaps it is because this is the year that I feel I have come to terms with having Parkinson's.  Perhaps it is my age and experience that lead me to even question (how dare I question my hero?!?!) the charming, happy covers of Michael J Fox's books, that have helped so many?

I am becoming cynical.  Parkinson's Disease is not always pretty, or funny, nor the people with PD always strong, and trying to enjoy the best of their days.  Some people with Parkinson's (PWP) suffer alone, in shame, and guilt.  These are the people that often do not share their voice when we have the April PD Awareness blitz each year.

These are the people with whom I have come to know directly, and indirectly, on a site that I help administrate, which focuses on the sometimes horrific side effects of the PD drugs/meds.   These stories are often dark, unbelievable, and thus, untold.  These are the people who have suffered through more than the disease itself.

T he most potent medication for Parkinson’s is levodopa. Its development in the late 1960s represents one of the most important breakthroughs in the history of medicine. Plain levodopa produces nausea and vomiting. It is now combined with carbidopa to prevent this side effect. The well-known combined carbidopa/levodopa formulation is called Sinemet.  The downfall is that it can be potent enough to cause dyskenisia which is the unvoluntary movements that are commonly seen in Michael J. Fox.



Dopamine Agonists,are drugs that stimulate the parts of the human brain influenced by dopamine. In effect, the brain is tricked into thinking it is receiving the dopamine it needs. In general, dopamine agonists are not as potent as carbidopa/levodopa, and therefore are less likely to cause dyskinesias. Dopamine agonists can be taken alone or in combination with medications containing levodopa. The two most commonly prescribed oral pill agonists in the US are pramipexole (Mirapex) and ropinirole (Requip).

In the 1990s Dopamine Agonists (DA), were toted as the "wonder" drug by Pharma and physicians.  Patients displayed  unarguably amazing results.  In fact, they were feeling euphoric.  Great news to the general PD public that suffer depression and apapthy.  But the euphoria was so dominant it made patients feel uninhibited, enhanced compulsions,  including sexual and gambling addictions, and many others.

The difficulty with the DA is that patients were feeling great, but also narcissistic.  The medications drove their desires to such extremes, that the patients were unwillingly, unable to control their compulsions.  These varied from gambling, to shopping, to spending to such a heightened state that theft, prostitution, etc., were hand-in-hand the only ways to feed their compulsions.  As a result, the patients were arrested, imprisoned, lost family, lost their homes, and their jobs.

When it was finally realized that the DA meds were to blame, the compulsions had totally consumed the lives of the patients, that shame, and remorse had such a grip on them, they were in denial.  Family and friends that stood by, found the life altering effects consume their loved one to a point that their personality, disposition, and even morals had been beaten.

Physicians quickly withdrew as many patients as possible from the DA meds.  But what followed was not expected. .......and even today, a virtually unknown condition called, Dopamine Agonist Withdrawal Syndrome (DAWS).  The main symptoms of DAWS are anxiety, panic attacks, depression, agitation, irritability, dysphoria, insomnia, and fatigue.  But the symptoms are so severe that many suffer years of deep depression and suicidal ideation.  It has been compared to the withdrawals faced by cocaine and/or meth addicts.

So....as can be understood, the shame that follows isolates the PWP from his family, friends, and his world in general.  They struggle to clean up the damage left behind....often through bankruptcy, divorce, prison time....some of the worst situations that these previously  honourable, trustworthy, upstanding members of society could never have imagined would ever enter their lives.

The symptoms of Parkinson's Disease are very trying on a whole.  Living daily with tremoring, pain, balance and gait issues, along with a number of cognitive issues, are difficult at best.  Then to have the years of DAWS added to it, the lives of many have been destroyed.  Destroyed by a little pill that was taken in the hopes of extending some less symptomatic daily living.  Instead , this little pill virtually destroyed families and lives.

This is the part of Parkinson's Disease that is rarely discussed,  the shame and regret overtaken.  There have been class action lawsuits against the pharmaceutical companies in Canada, UK, USA, and Australia.  But no amount of money can replace the lives that were forever changed.  These are the stories that are not told and spread in an awareness blitz.  This is the dark side of PD that is rarely, if ever, presented to educate the public.

So, yes, cynically I am preparing my happy, positive postings to share in the month of April.  To at least make people aware of Parkinson's Disease.  Perhaps one day, we can share it more truthfully....not hide the secret battles  Not seek isolation for fear of losing the privacy that victims fight to hang on to.  

We face shock advertisements on cigarette packages, revealing the dark facts of cancer.  We accept the horrendous stories of dealing with alcoholism and drugs through tv programs and documentaries.  Perhaps it is time to face the shock that many PWP also live with.  

This April....I too will post pictures of colourful tulips, ribbons of hope, and happy faces particpating in raising money. The positive, happy hero of PD, Michael J Fox will make appearances, and inspire us all.  But if you by chance, have read this blog, perhaps share one of the darker sides of Parkinson's with at least one other person.  If we can't change what has happened, we can at least prevent it from happening to someone else.  

Okay......awarness blitz away!   I am moving past cynical and aiming for hopeful.

 

Reflecting on 2015....Anticipating 2016

                                                               Yes, it is another, new year.  Time to reflect on the past and anticipate the future.

2015 was good to me.  Very good.  I became a grandmother.....that was wonderful.  A happy, healthy, baby boy, Peter Jonathan.

Now regarding my Parkinson's, which takes up a good part of my daily living....I must say....was also good to me.  Weird to say that, but, I think I felt better in 2015, than any year since diagnosis.  How could this be???  I wasn't cured.  I did not take some magical medication.  I think, perhaps, in 2015, I came to terms with Parkinson's Disease....acceptance.

This past year, I decided to embrace this disease.  I continued to educate myself through some of my online forums and PD Groups, and felt very comfortable giving advice and sharing some of the knowledge I have gained over the last couple of years.  I was asked to help administrate one of the larger groups, and as such, gained confidence, and a sense of pride in my own awareness of the many faces and facets of Parkinson's.  I have come to know some pretty amazing people from around the world, who face the same challenges either at a lessor or greater extent, but similar none-the-less.  I have realized that we Parkies, are a very supportive group.  Great people who open their hearts, offer advise and are very compassionate.  Even when there are miles or oceans between us.

My Movement Disorder Specialist moved his practice to Toronto.  Being well aware of the stress that compounds symptoms in something as small as attending appointments, Dr. Guttman organized online appointments through teleconferencing.  I discussed this in an earlier post, but I am now only realizing how much more effective this method of practise is, not just convenience wise, but also to take more ownership of my health.  I am prepared with my overview, medication updates, and questions well ahead of time.  Knowing there are time constraints, I have a more knowledgeable presence and help direct the session by what I deem as important factors to address.

My medications were tweaked several times over the year.  Currently the dosage and timing is next to perfect, so as to experience little, to no, "off" times.  I learned how important this regimen is to my daily quality of life.  Some days, I can't deny, I become frustrated having to work around my meds schedule, but it is a feeling short lived, knowing how much better I feel when I adhere to the routine.  

In continuing research for my groups, as well as for my own interests, I have become quite familiar with  research, trials, medications, and significant medical possibilities that are currently being studied.  In my quest for this knowledge, I often come upon an article, or online video of Dr. Guttman.  This thrills me as I gain this sense of contentment that he has, and continues to work on,  some of the most important advancements in Parkinson's Disease.  I could not be in better hands.

For my 2015 birthday, my son and his fiance organized a team for our local Parkinson's Walk.  I was thrilled that he knew how important my quest to help beat this disease was, that he would take this on and participate along side his mom.....one of the most endearing presents I have ever received.  Steven, being quite an organizer all his life, was quick to put everything in place, and as a result, my team, 7 strong, raised $460, and completed the walk, laughing, and sharing a very inspiring day among hundreds of other Parkies who are trying to make a difference.  Steven and Janey showed me that putting actions to my words, was one of the best ways to own and fight Parkinson's Disease.

In 2015, I watched my dad turn 82, battle Pancreatitis, have his driver's licence revoked, and become more frail with each passing week.  He has had difficulty with his memory, and become easily frustrated.  Although at times I feel that he is getting worse, he reappears with a joke, a story, or a trait reappears, that indicates to me....he is still the same man I have loved my entire life.  He is just becoming less independent, and as a result, has made me much more aware of spending quality time, and sharing stories of, "Remember when.....".  He reinforces to me that no matter what life throws at you (he has survived three triple bi-pass surgeries, two major strokes, and many mini-strokes and the death of my mother, his only love, at a young age) that determination and the power of positive thinking, will get you through the worst, and onto the best of what is to come.

I also got to see my Dad become a great-grandpa......making me, a grandma!!!  That beautiful little being that you hold in your arms for the first time, heals everything that is broken, or wrong in the world.  You sense familiarity as you see some of your son in this child, perhaps some of my dad, a glance or quick glimpse of my mom in the babie's smile...........I know that this beautiful union of my son and his wife, has created a life that will  continue to carry on all or some of the best traits of the people I have loved the most.  Holding him in my arms, I don't realize that my tremor is back, or my hip is aching....if only for a few moments....it is as if I am PD free.  Not a symptom, medicine or PD thought appears as I stare into my grandchild's eyes.

2015.....was indeed, very good to me.  I took control of my Parkinson's....it didn't control me.  Of course I had some bad days....many, if truth be told.....but none that ever outweighed the new role I had finally taken on.  The role of being in charge of my own health.  Trying to live to the best degree possible.  It is in owning it, and accepting it, that I can be a peace with it.  

Finally, what do I anticipate for 2016?  Well, I still struggle daily with apathy and fatigue.  These two symptoms are a daily battle.  For the upcoming year, I know I have gained the insight and strength to tackle them.....I may never completely overcome them, but 2015 has given me the tools to accept what is, and the drive, determination and support to not give in.  To change how I tackle them, and perhaps beat them down.  The past year, upon reflection, has been the basis to which I can accept and challenge whatever Parkinson's continues to throw my way, but with a sense of empowerment from what I have already accomplished.

2016....bring it on!!

  

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....



                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

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"