You'd have to be unlucky


#1

You’d have to be unlucky…
    I was 45 when diagnosed with Early Onset Parkinson’s disease in 2007. I believe it’s beginnings were as early as the year I turned 40.  It is predominantly a disease equated with the elderly and I have found that where I live, support reflects this.   We have no Community Parkinson’s Nurses. No support regarding managing medications, side effects, staying in the workplace. 

          The patron of our State’s not-for -profit support organisation is one of Australia’s most prominant  and respected neurologist. He heads a research centre for Deep brain stimulation.  I felt comforted that surgery would provide my final solution.  It hasn’t! I did make sure by going back a second time!

          Twilight surgery is something else. 
    Second time round I decided to avoid the confronting swearing that seemed to pour out of my mouth first surgery. I overlearnt some jokes to tell the Neurosurgeon as he rearranged my brain.
       “What do you call a fish who performs surgery on the brain?  A Neuro sturgeon!”

         My diagnosis came following a check up with my GP,  I mentioned the tremor in my little finger and was sent to a Neurologist to get a MRI referral.  At the time I attributed it to the stresses of messy marriage break up, study, work, single motherhood and coping with teenage angst.
         Unexpectedly, the Neurologist didn’t merely write the MRI request but wanted to examine me.  In ten minutes he had told me that it wasn’t difficult to deduce that I had Parkinson’s Disease. 


         From the moment of diagnosis I wanted information.  I asked him if he had something for me to read about it but he, uncomfortably, said to have the MRI to rule out brain tumours or worse, and come back in a week.  He bundled me out of his rooms as quickly as possible, As I fumbled for my credit card at the front desk, I burst into tears. 

   In my shocked immediate post diagnosis state, my 17 year old son asked if I might die from it? … then progressively… “Is it contagious?” … “Genetic?”  … “Can you still drive?”  He was unable to fathom my emotional state!

        


    Lack of practical information has made life most difficult.  I didn’t comprehend that I had a chronic illness.  It took 2 years before I discovered I needed to have this recorded on my car license.  No doctor  gave me a small sample bag or check list of “What now?”

    The seemingly endless amount of paperwork cannot be underestimated ,  interminable ‘on-hold’ music, waiting , waiting…  At times I fell asleep waiting for a voice that could at least point me in the direction of advocacy I needed.

    I have gained wisdom.   Every moment is just that.  A moment.  What I am feeling right now, will change .That I have always loved to walk, swim, ride and dance has held me in good stead.

    I don’t need much to feel joyful.  I have discovered only this year that I can be very content sitting in a rainforest or by the ocean.

    At the moment my husband and I live in a very flat regional centre.  Wonderful for  cycling which is the perfect, Parkinsons exercise!  I want to raise money/awareness  of  the need for advocacy and practical support for those, newly diagnosed and in the work place with Chronic illness.  (The square pegs that don’t fit any other place )

    I can cycle 25 kilometres into my local centre and last week did the round trip.  My bike is a bike, retro, pink cruiser.  (Chosen for it’s foot brakes rather than Pimpin ness)  When I cycle I don’t feel the weakness or tremor but I am slow. 

    The challenge will be called ‘twentyfourseveneternity”. From early on I have felt the 3rd hourly tremor (which now interrupts even my nightly hours) to be most torturous.   
    LOOK OUT FOR ME!!


#2

I can relate to your entire post, minus the DBS, your experiences ring true for me.  The 3rd hour tremor in a 4 hour pill popping schedule is a delight, not.


#3

I share your frustration at the lack of "what does this mean for me" type information and the emotional turmoil "immediately post diagnosis".

I haven't told my wife yet, and have no intention until unavoidable of telling the children, I feel your pain dealing with teenagers who no doubt had plenty more questions than you had answers, and while I can protect them from worrying about their dad, I fully intend to.

My bike is white (not sure I could carry off a pink one), full carbon, and goes much quicker than my nerves allow it to, or would if I wasn't always so early on the brakes, I would also never leave it unattended even with a good lock where I live (UK) as it wouldn't likely be there when I got back.