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.