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!!