Early Onset Parkinson's - Living UnSHAKEable

When people find out I have Parkinson's, the first question is usually, how did you find out?  Thanks to Michael J Fox, the disease is readily recognisable, so this blog sets out to help educate a growing population of Parkie's.  This is from my own humble experience.

I guess I should start from the beginning.  I was working as a Special Ed teacher, a job I truly loved.  Loved to wake up each day, loved the children I worked with, the staff, and parents.  This was my life.  I had 2 wonderful sons who were about 15 and 17, and we lived in my dream house on a lake.  But since my battle with breast cancer, things were just not right.  This was a very difficult time in my life as I was in the midst of a separation/divorce, and we had lost our house.  So, it was no wonder that I was feeling highly anxious, and shaking...right??  Having to rebuild my life and continuously concerned about how all this was affecting my sons, my place of work became my haven.  Then one day, my Principal said to me, "I think you need to take some time off and look after your health".  What?!?  What did she mean?  I was oblivious at first, and then realised my whole being, physically, mentally and emotionally, was rattled.  Or to be more specific....shaking.  I was making errors in judgement, my work, was declining and I was emotionally drained....plus this "shaking" was getting worse.  It just had to be nerves.  I finally conceded and booked a doctor's appointment, and took some time off of work.  Little did I know....I would not be returning.  The Family Physician sent me to an Internist, who sent me on to a Neurologist, who passed me on to a Movement Disorder Clinic.  Yes....life as I knew it was about to change forever.  The diagnosis of Parkinson's Disease, at the very least, gave me a frame work as to my future.  This is what Michael J. Fox has.....wow.  

Parkinson's disease (PD also known as idiopathic or primary parkinsonism, hypokinetic rigid syndrome/HRS, or paralysis agitans) is a degenerative disorder of the central nervous system. The motor symptoms of Parkinson's disease result from the death of dopamine-generating cells in the substantia nigra, a region of the midbrain; the cause of this cell death is unknown. Early in the course of the disease, the most obvious symptoms are movement-related; these include shaking, rigidity, slowness of movement and difficulty with walking and gait. Later, thinking and behavioral problems may arise, with dementia commonly occurring in the advanced stages of the disease, whereas depression is the most common psychiatric symptom. Other symptoms include sensory, sleep and emotional problems. Parkinson's disease is more common in older people, with most cases occurring after the age of 50 (Wikipedia definition).

At the age of 44, I was beginning to experience things, physically and mentally, that led me to believe....something was wrong.  I had, at age 21, beat Hodgkins Lymphoma.  At age 40, following a mastectomy, chemotherapy, and reconstructive surgery...beaten Breast Cancer.  But now, I had a tremor in my right hand, I was having great difficulty with concentration and short term memory, would take unexpected falls, and experience sleep disturbances that were very dramatic, extreme fatigue. and pain in my hip, extending down the leg to my foot.  Could these be the after-effects of previous treatments?  It reached a point that I could not function with my tremor....hand writing, daily hygiene, and small things such as doing up buttons.  I also felt like I was losing my mind at times....lack of concentration, difficulty with organising thoughts, remembering things that happened this morning, yesterday, a minute ago.  I was sent to the neurologist, who clearly and quickly diagnosed Parkinson's Disease.  This was somewhat of a relief...I had a diagnosis.  My neurologist sent me to a Movement Disorder Clinic where I began treatment and education on this new disease that I had.  Life as I knew it...or at least, planned it...was gone.

I guess the first symptom appeared many years ago.  Fatigue.  Not your average, busy weekend, lack of sleep fatigue, but one that was chronic and debilitating.  It did not matter how much sleep I received the night prior, or day time naps...nothing, and I mean, nothing, would work.  I remember driving to work, many days, trying to fight the fatigue.  Trying everything in my power to keep my eyes open and my mind focused.  I would turn up the radio, open up the windows, drink a caffeine drink....praying....do not fall asleep, do not fall asleep.  During my work day, I began to notice the "fog" creeping in, and slowly wanting to shut my mind and body off....lay down and get some rest.  Then, it would soon be the drive home, and fighting the haze would be even more difficult.   When I arrived home, the routines that had been in place for many years....time with my sons, making dinner, cleaning up, helping with homework...were all a very real struggle.  Instead, I would collapse on my bed for at least two hours of deep sleep.  I would not rise until evening, when I would fight again to stay awake until a regular bedtime hour.  I was totally wiped out, drained.  No amount of sleep would satisfy.  Was I depressed? Was I avoiding life?  Was I lacking some kind of vitamin?  Was this life after chemo??  I would live with this for at least 6 years prior diagnosis.

My mind began to experience change.  Feeling that it was due to this constant feeling of lack of sleep, I never really addressed the changes at the time.  I had taken the same route to work for at least 12 years.  One day I found myself not knowing where I was.  I pulled over, and ran in my mind, where was I and how do I go on from here?  Not an intentional metaphor!  I began to panic.  After forcing myself to refocus, I found another route, but a route none-the-less, to work.  

 I was a Resource Teacher that ran meetings with administration, teachers, and parents.  Of course organisation was of importance.  Preparing for the meetings became a chore....a struggle.  Who was it again?  Did I invite all admin personnel that was required?  Did I provide coverage for a teacher?  Things that had been a part of my job, so familiar and comfortable, became a game of "did I??", in my mind.  This, over time, began to rattle my nerves.   Paperwork began to creep in on me and became more difficult to complete with accuracy.  I tried to put pen to paper, but would struggle to recall the simplest of words.  The easiest descriptors that I had used for years on end, would roll away...off my brain...and I would struggle to recapture them.  Staff and admin would discuss a child with me, and I could not find the words, or coordinate my thoughts like I had been able to, so I was often faced with this person, staring at me blankly, with me knowing full well that they were totally lost in the way the conversation was progressing.  I looked, and felt, incapable of doing my job effectively.  

That is when the next symptom crept into my life.  It began as a subtle twitch in my right hand.  The twitch turned into a shaking motion, which turned into a tremor, which eventually turned into a run-away hand.  I could no longer use my right hand.  Hand writing had become small, shaky and illegible.  When I would be in a stressful moment, the right hand shook and flailed to a point that I could no longer hide it in my pocket, or beneath the table.  One day I was approached by a teacher at an inappropriate time, regarding a student.  I was angered that this child was being spoken of in the staffroom, and not in my office.  A simple situation....tell the teacher that you would be in your office after you eat, to discuss any concerns.  But here I stood, anger building at the fact that I was shaking, and being so angry with myself, I burst into tears, raising my voice to the fact that this was not the time to speak about the situation, and reached a final pitch..."I;m not shaking because I am nervous...I ....I just am!".  That is when I turned and slammed the door, exiting to my room as fast as I could.  Embarrassed, yes.  Angry...at myself ...yes.  Knowing why this just happened in the manner it did....no.  

So, here I was, fatigued beyond belief, having difficulty organizing my thoughts and recalling words, and shaking like a leaf in a wind storm.  

Thanks to the likes of Michael J. Fox, the path to detection is much easier on young onset Parkies.  But, this route is an important one.  Following the struggles with fine motor deterioration and changes in cognitive matters, the first step was to see an internist for further evaluation.  After a quick physical and a brain scan, she readily determined it to be Parkinson's.  At this point, I was put on a waiting list to see a Neurologist who specialized in Movement Disorders.  The list, apparently was up to a year long.  But, I think that due to my age, I was seen within 3 months.  Waiting outside the office in this large busy hospital, was like waiting for Santa...minus the excitement and anticipation.  Rather, just anticipation of finally getting some help.  While I sat there, scared, sad, and feeling , "Oh woe is me", I met a young girl who was also waiting.  She was 21, diagnosed with PD.  She was holding her tremoring hand beneath her coat, something that I did as well.  She told me that her entire family were Parkie's......she was so young and vibrant.  And here sat I, in my 40's , in disbelief that this disease could be a part of my own young life.  But 21?  To this day, I feel that it was fate that led us to meet outside that office door.  I had been shown first hand, that this disease was not partial to the elderly......this young, beautiful, vibrant woman had already faced it in her youth.  Suddenly, I didn't feel so special to this disease....it didn't set out to get me.....it wasn't poor me , and only me that would face Parkinson's for the rest of my young life.  I wasn't that special.   And so it would be...I would meet many people, both young and old, all facing the same struggle.  Wow, this disease wasn't too picky, was it?! It had no preference.

Next, the Neuologist put me on another waiting list.....2 year long.  This was to see the Movement Disorder Specialist at a Movement Disorder Clinic.  Within 4 months, I was in yet another office, awaiting my fate.  After a completion of motor tests, and reviewing my brain scan, he felt that Levadopa would be the drug of choice.  Now, there are prefereably two main groupings for PD medications.   Th goal of the medications is to connect the shortage of brain chemical (neurotransmitter) dopamine.  Levadopa changes to dopamine.  The other types are agonists, which behave like dopamine, but have many side effects that are undesireable.  An agonist may be given or added to the Levadopa regime when the Levadopa alone, no longer adequately controls symptoms.  You see, Parkinson's is not cureable...it is progressive.  Medications are given to make life more comfortable by controlling symptoms related to the disease.   So, Levadopa it was.  The Movement Disorder Specialist has a goal for his patient to be relieved of symptoms associated with the Parkinson's and adjust as the disease progesses.  Within the first few weeks, my tremor was gone while in a resting or relaxed state.  Only when I was stressed, or in a stressful moment (usually a doctor's appointment!") would it reappear.  

Now, with medication in place, the world was my oyster.  But wait....remember the word, progression?  Sometimes it doesn't take long, or rather, perhaps with some sort of relief from tremoring, other symptoms seemed to peak.  I was still battling fatigue in an ongoing basis, but now the aches and pains, that I just took as part of the aging process, sprang forth.  I, for years, had this dull but chronic pain that ran from my hip, down to my toes.  It was not just uncomfortable, it was annoying, whether sitting, standing, or driving.  And funny, it was on the same side as my tremor.  Coincidence?  I think not.  And getting out of bed in the morning, was a chore.  I would lay awake for a good 30 minutes trying to stretch my body....from toes, to legs, to arms, to neck.....and then when I could finally get to a sitting position, would spend another 5 minutes repeating the stretching.  Once I could get into a standing position, it took full concentration to move my legs in the right direction.  This, I soon learned, was called, dystonia.  Dystonia.  Yep, that was appropriate....to move like stone...that is the best way to describe it.  Once my medications were established, two tablets, every four hours, it was my hope that the dystonia would be managed.  But , suddenly, the lack of tremors brought with it new problems.

Each morning after breaking through the "stone", I would begin my Levedopa for the day.  The Specialist suggested chewing the tablets and swallowing it with a carbonated drink.  This kick-started the medication.  But, after four hours, I could definitely feel the wearing off effect.  So......during the night, that became a real issue.  I would get no more than 3 hours of continuous sleep, when the aches and pains, the stoning affect, would kick back in.  I could not reach REM, and was so restless and anxious, I went for about a year of going to bed at 3:00 am, getting up and taking meds at 7:00 am, and returning to bed for 3 more hours.  And because I was not receiving consistent rest periods, I would require naps as well.  My whole daytime/nightime routine just began to blend.  This led to other familiar Parkinson symptoms: depression and apathy.  So a cycle of lack of sleep, and turning to stone, I felt very isolated and alone.  Not that I didn't have wonderful supportive family and friends, it was just that no one knew, or could fully understand these symptoms that could not outwardly be seen.  Apathy, I think, had to be one of the worst.  I didn't care how I looked, what happened to me, didn't look forward to anything, and nothing, no plain reasoning, could get me out of that state of mind.  I didn't find pleasure in anything .  I just wanted to experience that feeling of happiness once again.  After about a year of fighting with the sleep deprivation, my MD Specialist gave me a prescription for a sleep aid.  That very first night, I slept....really slept....a continuous, deep 10 hour, uninterrupted sleep.  It was like a gift had been given to me.  Sure, the dystonia was still present, even more so, but once I was up and about, I felt refreshed...I felt like living again.  The apathy faded, and I once again could actually feel that sense of well being.  

My point here, I suppose, is that the medications and reactions need to be monitored continually.  That is where, my team, became an important aspect of my well being.  The team consisted of my physician, my neurologist, and my MD specialist, all comparing and sharing in the best interest of my comfort and physicality.  The medications are prepared much like a cocktail......exact amounts of this, and that, combined to make the greatest impact on the patient.  Now, with the sleeping aid, and the tweaking of the Levadopa, I felt better than I had in many, many years.  That, though, was only true when the regimine was followed to the precise minute.   The flexibility was still in my hands.  The MDS gave me extra Levadopa to keep on hand should my day be extended (eg. an evening out ) as the need arose.  And after doing some research, found that this would be extremely important for Parkie's for example, when hospitalized.  We know exactly when the wear off is beginning, and to have to wait to receive the medication at someone else's (eg. nurse) schedule, woulds just not  be acceptable.  Thus, a push to allow Parkinson's patients who are hospitalized, keep, and control their own PD medications.  

As with anything progressive, one must be constantly aware of changes.  Prior to my diagnosis, I had fallen several times, for no apparent reason.  I'll never forget the day I stepped outside my back door to have a cigarette (I know, I know.....).  We backed onto our neighbour's back yard.  After I was done, I turned around to step inside, and my legs literally stopped working.  I fell down, and had to grab a hold of the door knob and pull myself into the house.  Another time, I was walking with the children of my school, to the church, which was several blocks away.  Suddenly, about half way there, I fell.  Again, it was as if my legs had just opted out of moving.  Once I began Levadopa, I have yet to experience that again.  But, a change has been in the way that I walk.  I have to concentrate more on my posture.  I quite naturally walk or sit in a stoop-like position.  This throws my spine out of whack, my neck muscles pull, and as a result will get a pounding headache.  The other change has been in turning while in walking motion.  I must concentrate....it is as if by concentrating on the change of direction, I am actually commanding myself to walk.  If I do not concentrate, I become almost dizzy and my feet become disoriented.  Hence, I guess, calling it a Movement Disorder.  It is similar to using my tremor hand.  That is one of the most frustrating things so far.  It is as if my right hand has a life of its own.  To use a pincer grip with my thunb and pointer finger, is very limited.  I must fully concentrate on making the grip open, pick up, close, hold and not let go.   It is so frustrating in fact, that I have learnt to do most things with my left hand.  That includes basic hygiene, like brushing teeth, to throwing, to carrying with my left.

The "must-have" for all Parkies, is a dedicated and understanding caregiver.That person is one who should attend meetings and doctor visits, not only with you...but on behalf of you. There are many doctor appointments to attend, and it is important that someone else hear the information, and relay information.  My appointments are usually in the morning.  This is the roughest part of the day...having woken up with dystonia, it is a matter of hours before the next dose, and I have found  that until that happens, I really am not fully attending, cognitively.  I do know that however involved your caretaker may be, he/she still does not fully understand all that you will go through in a day.  Sometimes this can be frustrating, as the caregiver is waiting for some kind of improvement....there never will be any.  My caregiver, for example, would discuss at length with my MD Specialist, the issue of my sleep deprivation, mainly, not getting a consistent 8 hour sleep.  When the doctor finally increased my meds, and made some changes, bingo-gango...I slept 8 hours!!  I then asked my caregiver, there, I did it...now what?  I still had dystonia...even worse as a matter of fact, because I was lying down for so much longer.   I know he must become frustrated.  But my point here is that with Parkinson's....no one else knows what you are going through, except perhaps another Parkie.  That is why I suggest you seek a support group.  There are monthly meetings  through your local Parkinson's Society , but I prefer to  to seek answers to questions, and ways to seek advise through online support.  One of the first, and best sites for this is, Patients Like Me.  This site includes a forum which is almost constantly active in discussing and addressing personal issues that a Parkie may be dealing with.  It also provides charts for you to complete and keep updated, as they will use this gathered info as part of their research.  Having this right at your hand, any day or night...that is people who are going through exactly what you are, is , corny but true..priceless.  That is why I have also opted to set up a forum for my site, UnSHAKEable.  Discussion can be so important in feeling that you are not alone.

And you are not alone.  There are many of us now....younger perhaps, but all facing similar hurdles.  Please visit my forum to discuss or contribute to the hurdles of daily life.  Go to http://www.unshakeable.proboards.com/

Also, visit my facebook page, UnSHAKEable, to read and contribute to the latest research and information in the land of Parkies.  I believe that educating ourselves in the Parkinson's  condition, we can work together to be, UnSHAKEable.

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Nov. 29/2013

And so....after that lengthy introduction, I begin my new life as a "blogger".  While it is very true that I have difficulty with word recall and organization of thoughts, it is generally speaking when it must be an immediate recall.  But with writing, I can pause, rethink, rewrite, or just plain walk away until it returns.  I find too, that I am definitely not as articulate as I once was, and the computer allows me the ease with which to make the necessary changes along the way.  In real life, I may stagger for a moment, or go completely blank, and say...ok, I lost my train of thought.  As a friend, help me to recall if you can, but please, don't rush me when I am trying to re-think.  Another symptom...little known at that, is a decrease in voice level.  We tend to speak quietly, and are quite unaware of it.  I am often asked to repeat..."what?".  This is very frustrating as well.   To the one listening as well as myself, speaking .   This happens quite frequently in conversations between my Dad and myself (he being 80).  He so often gets frustrated when we speak, that he can't hear me.  I know then that I must raise my voice. 

So, in essence, this blog has become my new voice.  It will allow me to educate, reflect and pause, when needed.  And perhaps, just walk away for a day or two, when needed.  But I hope that I will always be able to come back and know that someone was listening.  Wow...I am a Blogger!

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Dec 3/2013

Well, I just came back from yet another doctor's appointment.  It was quite insightful today, actually.  As I have mentioned, sleep disturbances are quite common in Parkies.  I went a year or more without a consistent 4 hour sleep pattern.  While the doctor did finally administer a prescription for an excellent sleep aide, he did neglect to take me off the previous meds that were to do the same.  In essence, I was over medicated with sleep aides.  He explained that the dosages I'm on would knock out the regular person for a week, for a person with Parkinson's, it just sedates.  That is why I have a difficult morning, and really don't manage to get up and about until noon.  So...beginning tonight, I cut back from 3 pills to 2, for two weeks, and if I can still continue to sleep, cut back another...an so on.  I am a little hesitant in the fact that I know what life is like with sleep deprivation....and it is not pleasant.   

The other thing that he insisted on, is exercise.  Now, having read a lot of research on Parkinson's I know this to be true.  But, being so tired, and sore, it is one of the last things in the world that I want to do.  He said that exercising my body is as important as exercising my brain.  I hate that fact....I hate to sweat.  But under no circumstances that I threw his way...too tired, too sore, not motivated enough...would he accept.  And so, I could see I was losing the battle on this one.  He also convinced me to register with a Tia Chi class to aid in balance and co-ordination.  Wow....I'm going to be smart, buff, and in balance.....way to go me!  The doctor also explained to Frank what it was like to have PArkinsons.  Now this doctor teaches at the University of Toronto, so I became enthralled with how well he presented it.....I didn't think that anyone who was not a Parkie could truly understand some of my issues.  But, wrong again.  He nailed it.  He began by using the light switch which had a dimmer on it,, to explain the on/off affects of the Levedopa and my "wiring".  He explained that while the meds were wearing down after 21/2 hours, my body will actually go into a panic state and that is how I will feel until the next dosage of meds kick in 40 minutes upon taking.  And he described a feeling that I had trouble explaining, one that my whole body feels like it is nervous/shaking/wanting to jump out of my skin.  This is the point where he turns the light up high.  So while the meds work to slow down and relax overly active muscles/tremors, coming down from it heightens the anxiety of the tremors/twitches/muscles until they receive their next dose of Levadopa.  Hence, the on/off affect.  That is why it is so important that we have our medications readily accessible. 

Then, the doctor went on to explain to Frank (who is known officially as my, Caregiver, (lucky him!!!!)  that my world is slow.  To speak, to think, to react....everything has become slow, and thus, frustrating.  I found, and the doctor confirmed, that when in conversation, my voice, and my thoughts are at a much slower pace.  So in a large group setting, it becomes frustrating in the fact that by the time I have taken in the information, processed it, and am ready to contribute...in all likelihood, the conversation will have changed the course of direction.  I felt this several weeks ago when the boys were home with their girlfriends, and we were all gathered around playing cards and talking.  I felt suddenly quite overwhelmed, and realized I was just sitting there taking everything in.  Would they wonder why I was so quiet?  Would I appear rude, or disinterested?  I tried to overcome this, but could not.  Now, to be honest, I don't think anyone else really took particular notice, but I felt very comfortable just to sit back and listen.  That is not the norm for me.  My two cents are generally thrown around here or there...but not this time.  Now, anyone who knows my, Caregiver, knows he is very social.  It became a battle when I was with him to join a discussion.  I felt as if he and whom ever else we were with, were constantly cutting me off, or out of the conversation.  I became very frustrated, and often resorted back to pouting, with arms crossed.  But today, the doctor made us both well aware of the fact that my world is now, slow.  Quite simply....slow.

I took away two things from my appointment today.  My frustrations can be managed when myself, and those around me, are aware of the fact that my world is slow.  The second thing of importance...and wow, I'm really going to admit it, and commit to it.....exercise the body.  AAaaargh!!  I will have to force myself to move, and possibly sweat a bit, in order that I will continue to move, and sweat.

So, with all that said, I came home, and took a walk around the block.  My world is slow, therefore, my exercise will be too  (as I sit here with a pout on).   I need to have some satisfaction out of today's  visit.  Slow exercise sounds about right to me.

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Dec. 4/2013

Just another day in the life of a Parkie.  What set out to be such a simple task, set my tremors a rumbling!  

I was waiting at a well known pharmacy with my father, who was asked to wait for his prescriptions.  I decided to browse....you know, with Christmas right around the corner.  I saw a perfect stocking stuffer for someone on my "nice" list, and decided to purchase it.  Now, this time of year, the stores and shoppers are a little crazed and panicked, but heck, there are still 3 weeks to go.  Needless to say, there was a small line up at the only cashier available.  I approached to pay my item,  just like everyone else.  But then, unlike everyone else, this was going to be a real challenge.  I opened my purse to get my wallet, and needed to set the purse on the counter of course.  I had to fiddle with the zipper of the purse, and then just reach in and take out the wallet.  But, remember my difficulty with fine motor and pincer grasps.....yep, I dropped  the wallet back into my purse, not once, not twice, but three times.  When I finally got a hold of it and set  it on the counter, I had to fiddle with grabbing the cash.  While I was trying to jump that hurdle, the cashier asked for my points card.  OK, other side of wallet, in the card slots which are difficult to grasp at the best of times.  I suddenly became quite aware of how much time this was actually taking, when I heard this frustrated sigh coming from the person behind me.  Well.....if that didn't make things worse!  Now I was stressed, and my tremor became more pronounced.  I still had to get the change from the cashier, put it in the wallet, put my wallet in my purse, do up the zipper, and grab the bag with my stocking stuffer.  In my mind, it was as if  hours were passing by........stress levels rising, tremors erupting, trying to complete this very small task.  The doctor's words, "Her world is slow", kept hanging in the air as if he were on my shoulder shouting , "see, thats what I meant!!".  As in time lapsed video, I dropped my gift bag..feeling like in a time warp...watching it drop, drop, ....while I thought to myself..."Ooohh...n..n..noo..noo" in a slow motion voice inside my head. 

I picked up the bag and my purse and walked to the car...shaking, and fighting back tears.  I wanted to turn to the customer in line, and shout, "I have Parkinson's ya know!", but again, my thoughts and actions ran in sync...slowly.   I gathered my wits about me, only to realise, my dad was still in the store.  My gut instinct was to just wait in the car, hide my head in shame.  Then I actually  carried a conversation with my self in my head.  It went something like this:

"You shouldn't go back in there looking like a fool", "Why am I a fool....I just appeared a bit clumsy".  "Well, the people behind  you were annoyed with you".  "Well, they should get over it, my world is slow".  "Their world isn't, and you just wasted their time".  "No, perhaps everyone needs to slow down, especially this time of the year".  

  You see, the biggest battle that we, Young On set Parkies face, is the fact that we look fairly normal.  Like any other person waiting in that line.   What isn't seen are the insides, that are shaking and quivering, and slow to move because the brain isn't providing the dopamine it should,  that would allow for the menial task of purchasing an item to go smoothly.  This unfortunate interaction frustrated me to no end.  I kept running the scenario over and over in my head...the one with the ending where I would pronounce loudly, and quite overtly, that ...I ...had... Parkinsons ! (oh, and I would add...."so there!" for the sheer dramatic affect of satisfaction).  But that didn't happen, and probably won't, too often, anyways.  For now I guess I just have to hope that I surround myself with people who are patient and understanding of everyone....not likely while Christmas shopping. 

A lesson learned.    I turned and walked back into the store, head held high, looking for my dad, all the while thinking, heck, I must look pretty darn good for a Parkie.   A stranger just thought I was annoying.....not someone with a progressive disease.  Huh...

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Dec. 5/2013

Just an average day in Parkie  Land.  I must admit though, that taking the one sleeping aide away at night has given me a somewhat better start to my day.  I guess I will be able to monitor this better when the next change (down to 1 pill) comes in two weeks.  But, so far...touch wood....I have slept well at night.  The other change, that being exercising...did I say yuck?!?....is a chore, but I am doing it.  So far I have just been taking a walk, a couple of blocks, in the neighbourhood.  Now, I can't promise a marathon in my near future.  Probably...like...never.  But I finally admit that a Parkie is better to use it than lose it.  Both mind and body. 

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Dec. 9/2013

Well, I thought I should update my post regarding titration from my sleeping aides.  It has been difficult to keep on schedule, but when I can, it has been quite successful.  What I mean by scheduling is, one night I had to pick my son up at 2:30 am, as he was returning for the weekend from College.  Thus, the timing of all my meds were off.  But the last two evenings, I have gone to bed at a "normal" hour, 11:00.  I take out one of the 4 sleeping aides and take the others, with my Parkinson's Levedopa (whch I had been neglecting to do), and it is like magic!......I sleep sound, and wake up around 8:00am.  I have a small breakfast, check emails, and return to bed for about 1 1/2 hours.  Then I am up for the rest of the day.  I have also been faithful to walking each day.  I do find that this may take longer to get use to...by night time, my hips are aching.   It has become obvious to me that the Levedopa (2 every 4 hours), is wearing off a little sooner.  I begin to feel the nerves in my body kicking in about 1/2 hour before designated dose is due.  Well, I know, that is part of the progression.  I think though, I will try to stay on my current regimen until I see my MD Specialist in the New Year.    Truly, taking my Levedopa on time is so very critical.  As is sleep.  So, my Parkie day will have to be prioritised by my sleep and medication.  I bet Michael J Fox has an assistant for that!

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Dec. 18/2013

I had a terribly restless night.  It was the beginning of the removal of the second, of three bedtime Clonazepam.  Taking away the first, was a breeze.  The second one was much more difficult.  I could not seem to "shut down" enough to sleep.  I woke up several times feeling panic stricken, and my dystonia seemed more prevalent.  I woke up at 5:30 am, and actually had a pain in my chest.  I think tonight I will go back on two tablets...then after a day or two, try to cut it down by 1/2 instead of one.  Without the deep sleep I have been getting use to having, I felt anxious, apathetic and sore for most of the day.  Well......I shall keep trying.

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Dec. 22/2013

Well, I hit a new hurdle in the life of a Parkie.    Although I had read research materials regarding the connection of loss of smell and PD, I never really realised how much affect this could have...until this week. 

I have noticed that I have lost most of my sense of smell, as when I'm asked, "Don't you smell that?", I most often reply with a, no.  There are also studies linking this loss of sense to one of the first signs of PD.  But this week I decided to "scour" the entire bathroom with bleach.  I was quite pleased with how clean and white everything looked....and then...Frank came in the front door of the house and yelled at me to open some windows.  His eyes were burning from the smell of the bleach...and that was 2 rooms away.  He proceeded to tell me how strong the smell was, as he threw open a couple of windows.  My son came in shortly afterwards, and he too complained.  It suddenly hit me how dangerous a situation this could have been.    I realised too, that my eyes hadn't even detected it.  You see, with PD, one tends to blink less frequently than the average person, and often the eyes are dry, as are saliva glands.  So.....long story short, my son (being a firefighter), told me to make sure that the fire alarms around the house were in working order so that I would at least hear the alarm, should there ever be a fire.   This is yet another hurdle in the sprint of living with Parkinson's Disease. 

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Dec. 27/2013

Oh my....Christmas is over.   My  oldest son has gone back home, and my youngest, back to college.  We took down our tree and decorations, and got the house back to order.  It actually makes me feel good.  I have felt nothing short of exhaustion the past few days.  And I must admit, I did very little, if any, of the cooking.  I just had to basically sit and enjoy my family.  But following so many conversations, and having to appear attentive, has caused me great fatigue.  But I refer back to my Dr.'s great words of wisdom.....a slow world.  Christmas is the farthest thing from being a slow time of year.  I think I kept up but am now down for the count for a wee bit.  A little extra sleep, and staying on top of my meds, I'd say I'll be back to my normal Parkie self by 2014.  Wow...thats only 5 days away.......better start now!!

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Dec. 31/2013

Here I sit, on New Year's eve, with 2014 at the door.  It is a time to reflect on the past year, and a renewal of hope for the coming one.

In 2013, dealing with Parkinson's became....well, not easier....but it just was a part of my every day living.  For the most part, my symptoms remained the same.  What was different was that I could finally understand and express what I was feeling.  Once I was finally able to sleep, the world didn't seem such a terrible place.  I kept all my doctor appointments and was pleased at how well they all came together to work as a team.  I have absolutely no complaints about our healthcare system.  This is a blessing.  With my meds regulated, it was only a matter of changing my lifestyle to fit the disease.  I realised that life would be slower, and some struggles a little tougher, but I accepted that this was how it is to be. 

My greatest fear with Parkinson's are the cognitive changes.  Difficulty with short term memory, coordinating thoughts, slower processing, and being able to carry a conversation were a few of the hurdles.  But knowledge is the key.  Once I was able to share these changes with my family and friends, I was able to participate much more freely.  Now I don't hesitate in asking someone to wait until I can pull my thoughts together.  And in knowing this, my family seem to understand my battle a little better.

The greatest annoyance was trying to complete the menial tasks without frustration.  Getting dressed, putting on makeup, getting money out of my wallet, were the little things that I couldn't overcome, rather, learnt to deal with it at my own pace.  Now well aware that my pace was much slower than the average.

The best thing to happen this past year in relation to my Parkinson's, is the amazing effort of so many to support my site, UnSHAKEable.  I remember starting with the idea, and wondering how in the world I would get 100 supporters.  But with the backing of family and friends, I surpassed that goal.  It truly took my breath away watching the last few supporters being recruited by young people who probably had never even heard of the disease.  But these young people banned together for a cause and someone they didn't even know directly, to help me start a site to educate and initiate awareness of this disease.  The youth of today are amazing men and women who will answer the call to someone or something that they have a desire to promote.   Starting the site, followed by the forum and my blog, could not have been possible without them.  Our futures are in good hands.

So, what will 2014 bring?  I could wish for a cure...but that seems unreasonable.  I guess the most I could hope for in the upcoming year is that some kind of ground breaking research has successfully been completed in the area of pharmaceuticals.  It is my hope that at least a better method of delivering the miracle drug, Levocarb, be available in a new form that will help elevate the "down" times/episodes in a Parkie's day.  Until a biomarker is found, the most we can wish for is as functioning and pain free a day as possible.  That would be my hope for Parkinson's in 2014.

For myself?  I just hope to be able to continue living the best life I can.  I hope to continue and perhaps expand my site, blog and forum so as to reach as many young onset Parkies as possible.  Above all, I want to maintain the open dialogue needed to help others understand this condition which is often not visible on the outside.  Parkinsons is more than shaking.  And I hope in 2014, I will remain, UnSHAKEable!  HAPPY NEW YEARS!