Jun 26, 2018

Sometimes one remains quiet when there's nothing positive to say

This is definitely a long overdue post and the longest I've ever gone without writing.  To my faithful readers I apologize.  But the hard truth is that I was in a bit of a rut with alot of Parkinson's related turmoil in my life.  I've been simply treading water and dealing with each problem as it arose and was in a state of mind with not alot of positivity.  Therefore I remained silent in my little bubble.  I shall try and recap in a short form as I move forward.

Back in the spring I had hit an all time high of weight gain, larger than with my first pregnancy where everyone thought I was carrying a baby elephant, yet still working out 5/6 times a week like a crazy person.  Gaining 2-3 pounds every week consistently and dealing with severe swelling all over my body but particularly my legs, ankles and feet.  The culprit... Pramipexole.  The medication I'd been on three years that I took in between levodopa doses to help level off the crashes and make "off" times less severe, and the med that also helped my painful dystonia tremendously.  The decision was made that my edema had become so severe it was at a point where it was dangerous and I had to come off that medication despite how well it worked.  Between my movement disorder neurologist and my family Doctor we tried everything possible to avoid going off this med to no avail.  So started an 8 week process to wean off the medication I was at the maximum allowable does of.  In a nutshell life got rough, exercising became more difficult, even walking was painful.  It was not a fun process by any stretch of the imagination.

Once fully off pramipexole it was time to start a replacement medication combined with increased frequency of levodopa intake which also caused the starts of dyskenesia which is also an unpleasant side effect.  I started taking Bromocriptime another dopamine agonist and the day I started the new medication with the plan for 3 weeks of increases to get to the full dose I had a negative reaction o the medication and was sick beyond words.  I couldn't function within 2 hours I had every possible side effect listed.  I spent my day feeling like death and on the phone multiple times with my pharmacist and my neuro team in New Brunswick.  The decision was made to stop the medication entirely until side effects went away and then start again at 1/4 of the original starting dose and space out the intervals to much longer in between dose increases.  I'm now I think 8 weeks in and still not at the full dose but should be in another week or so.

During this time of going off pramipexole and trying to start the new med the dystonia in my arms, hands, legs and feet got quite bad.  I was no longer able to play guitar or fiddle, holding drum sticks could only be done for a few minutes and playing piano was although still doable harder than before.  Music is my happy place, I turned my garage into a music room, taught myself how to play various instruments and would get lost in music.  No stress, no worrying just peace.  Not being able to do that which had many more benefits like maintaining cognitive function and memory etc... was devastating to me and put me farther into a rut of sadness.  My cane was used more, I could do less with my kids and to say I was down in the dumps would be an understatement.  The only good thing that had come thus far from all of this was the fact that I finally stopped gaining weight after having the scale increase every week for months.  I've only lost 5 pounds so far of the 52 gained but at least I'm no longer growing in size.

Then my beautiful girls were hit with the stomach flu just a couple weeks after starting the new med and it's bad reactions.  Of course I tried to not get it but alas Mom was hit and vomiting started around midnight one Thursday evening.  After having thrown up my night time meds and being unable to keep anything down let alone medication I was in rough shape.  You see while medicated the majority of the time people are shocked to hear I have Parkinsons I'm usually in pretty good stature, my meds work very good.  I do use a cane often during off times which surprises most people when they see me using it.  However 20-30 mins later when the next pill kicks in I'm usually good to go.  However, me unmediated is an entirely different, alarmingly scary picture.  Combine that with the weakness and fatigue that comes with the stomach flu and it's a recipe for disaster.  I won't get into the gory details or the degrading moments of it but the result was that by 9 am the following morning there was an ambulance in my driveway and it took 3 EMS workers to get me onto a stretcher while my poor sweet 6 year old Izabella cried hysterically in fear of why these strange people were taking Mom away (her sister was at school).  I ended up in hospital for about 30 hours before IV, meds, anti nausea meds that I can actually take had all kicked in enough that it was safe for me to be home.  Upon arrival it took two nurses bearing essentially all my weight to get me to my feet, 30 hours later with levodopa back in my system I was slowly getting up and walking by myself using my cane.  One of the nurses commented to the Doctor that this "levodopa medication is a miracle med"... Well yes, yes it most certainly is provided it's in your system.

So over the course of 3 months life went to hell and a hand basket quite rapidly.  I pondered writing multiple times but just didn't have anything good to say.  And then amidst all this turmoil I got the call with an appointment date for my DBS consult with the neurosurgeon in Halifax I'd been waiting for.  Hope was coming.  Fear of rejection came with that too, as I needed a 'YES' to continue testing at that appointment.  With a great amount of nerves I ventured to the neighboring province for the consult, sick to my stomach with fear they'd say no.  However I was thrilled and overwhelmed to the point of tears (it had been a long few months) when they said YES!  That Yes they thought I was a good candidate for DBS and wanted to continue with the testing.  Testing which involves another control test (going off meds, then back on which I had done last August), a series of MRI's, DaT scan's and a 6 hour day with a neuro psychologists team for cognitive, memory and other psych testing.  After which the team in Halifax along with my team in New Brunswick will decide if I get the final YES to DBS (Deep Brain Stimulation) and get an actual surgery date.  It's all rather overwhelming to be trying so hard to get brain surgery.  But the reality is that even if it only worked well to treat my Parkinsons and Dystonia for 10 years I want desperatly those 10 good years to be now while my kids are young.  That could potentially bring me at least to my eldest daughter being 20 and youngest 17, it would give me renewed ability to play with them and do the things they'll get to fill their memory banks with now while it's important.  I'm thankful to have just gotten word yesterday I'll be back in Halifax September 25th and 26th for part if not all of the required testing.  From then forward I pray for a final YES to come.  If so I will most likely either end 2018 or start off the new year with renewed hope and a crazy brain surgery!

I'm going to say that depite the roller coaster I've lived on the last few months I am getting back to my kick some ass mindset.  I'm starting to be able to play guitar a bit again thankfully, DBS is a real potential on the horizon, the new meds although they do not work as well are helping, I've found the right timing on levodopa to get the most benefit with least amount of dyskenesia possible.  I think things are looking up again despite my feelings of life and Parkinsons just totally defeating me so far this year.  But I'm reminded of something I said in the past that I actually have inscribed on one of my canes.  "Admitting defeat is not failure if the goal remains the same, it simply means the path to get there has changed."  So I'm happy to say I'm Back!  I'm not defeated, I may have had a rough go but there was light at the end of the tunnel as I crawled through a bit of darkness and although I know there are likely more dark tunnels ahead I know there will always be that glimmer of light to look towards and crawl towards until you get to the other side.

An interview I did recently about the process to getting approved for DBS

1 comment:

  1. Hi nastsha just read this today aug 30. What N indomitable spirit you have I’ll chcek to see if you are around while we are on the island this weekend love Pete