Jun 14, 2017

Dig deep & show Parkinson's who's boss!

Last week I set out on a journey of a lifetime with two Parkie friends and together we achieved something I never expected I would in my wildest dreams without having Parkinson's let alone with.  Myself, Dan Steele & Paul Bernard cycled Prince Edward Island's Confederation trail from tip to tip totaling 273 km in 5 days to raise awareness and funds for Parkinson's!
We called ourselves the PEI Pedalling Parkies!
We spent over 20 hours in the saddle, we biked through extreme heat, wind & rain.  There were times I honestly did not think I could go on and oddly enough every time that happened I saw a butterfly right in front of me, leading the way.  I've written about butterflies before and their significance to me.  They symbolize a catalytic moment in life and when a butterfly breaks open it's cocoon to take flight, the harder it's struggle is to get free the stronger it will be in flight and the longer it will live.  I do not believe in coincidences and in the moments I thought I couldn't peddle one more turn there was a reason a bright yellow butterfly would appear just ahead of my tire, fluttering forward.  A reminder to keep going!

It all came about in a rather funny story.  My friend Dan used to be a hardcore cyclist, completing the province wide cycling trip over a dozen times in the past, even doing it once in a day (which I cannot even imagine).  He cycled Cape Breton's infamous Cabot Trail multiple times, cycling through mountains and he event spent 7 weeks cycling across CANADA from British Columbia to PEI.  And then like many of us Parkinson's Disease took over, fatigue, tremors, slowness, depression, apathy all the typical symptoms most of us Parkies have to deal with consumed life.  Dan was diagnosed about 3/4 years prior to me and will turn 50 this year.  I met him after my own diagnosis when I started attending the local Parkinson support group.  Over the last 3 years I've as Dan calls it 'badgered' him to get active again, after all like I've said so many times it is the only scientifically proven way to slow progression.  I would ask him to go for a walk, come to the gym with me, give bootcamp a try or to go biking with me.  He always said no, but always seemed grateful I would continue to ask (and likely a bit annoyed I wouldn't stop LOL.  Late last year Dan was in the process of finishing working and going on Long Term disability.  Something I had already done and as I've written before struggled with.  It's a hard thing to give up a career you both loved and worked hard for all your life at such a young age.  I still struggle with it by times and it'll be 4 years this summer since I had to stop working.  Knowing how difficult it was for me I tried to help with a positive spin on it for Dan.  Telling him how there are benefits to not working, like having more energy to be a parent when you aren't exhausted from trying to pull off a days work, being able to take better care of yourself and of course having more energy to exercise and the ability to time  meds being at their prime.  All very true but even I still struggle believing them sometimes.

Pre Trip Interview with CBC Radio's Island Morning Show



So this is when it happened... I opened my big mouth and Dan called my bluff.  I said to him "hell once you're done working you can cycle across Canada again!" to which he gave me a look, laughed and said something to the effect that he'd done little to no exercise the past 6 years and he didn't think that was going to happen.  So I continue on with "OK, then, PEI, you can bike across the province again, hell if you do it, I'll do it with you!"  Never did the thought cross my mind that after 3 years of hounding him and three years of no's to everything from a walk to a leisurely bike ride did I think this man would say YES to this insane idea.  Well, he did just that and I laughed thinking he was joking only to have him the following week start discussing planning the trip with me.  Oh dear... what did I just do?  Is the only thing that came to mind.  I was encouraging him and panicking inside all at the same time in the weeks to follow.  To speed things along I knew when January hit this year that despite my fears about cycling 273 in 5 days with a Parkie body and one that was never a cyclist before was worth the effort when he hit the gym and put his bike on a trainer in his home and started faithfully working out.  And then the tables changed ever so quickly.  I couldn't get myself motivated to get on my bike after a friend lent me a trainer for it.  It sat where I would see it, set up and ready to ride on it mocking me from a distance, I had zero interest in getting on that thing, even though I knew I had to.  So when I would see Dan typically at least once a week the questions on 'did you exercise this week' became his vocabulary not mine.  He was the one hounding me about training for the trip and I was the one saying that I hadn't done it.  In the words of Dan "be careful what you wish for"!

All that being said we put it out there that this was something we were going to do.  We decided it was a prime opportunity to spread awareness about the disease we both live with and how it's not necessarily that image of the old hunched over man.  That young people get the disease as well, and even the seniors that get it don't often appear that way, especially not if their medications work properly.  It was an opportunity to dig deep and push the Parkie limits and show not only the disease who's boss but others that they shouldn't give up.  And it was a great opportunity to raise money so we can offer more programs, services and things to help people in our province that live with Parkinson's.  So we put it out there for others to join and another Parkie friend of ours Paul was the first to sign up, followed by 4 other people who wanted to join us and help support the 'three parkies' on this trip.  We had various others register to ride a day or two and tons of volunteers and donors to help make it all happen.  We hit some training days together as a group and individually leading up to our June 6th departure and we were as ready as we were going to be.

What I did not know when this all started, was just how difficult it was going to be.  Of course I knew it was going to be hard as hell, but I didn't count on how difficult emotionally the trip would be.  I had no idea how much I'd laugh even through tears and pain spending 5 days with this two incredible men and the support riders, getting to know each other on much deeper levels.  I had no idea just how inspiring they and the experience would be.  I had no idea that this insane idea that I never thought he'd say yes to could be life changing, I think for all of us.  I had no idea.  None whatsoever.  And when the day came to head to Tignish on the western tip of the province to start pedalling to the eastern tip I had no idea I was about to embark on one of the hardest but greatest experiences of my life, I couldn't have known as we piled in those vehicles bikes loaded that this trip was going to change lives, particularly my own.  That it would inspire so many people to not give up, to never let anyone, or anything including a disease tell you that you can't...

We did five days, the first was relatively easy (I say that with a giggle) from Tignish to O'Leary was 45km and the weather was great for cycling, the trail was relatively easy on that stretch and we finished day one much easier than I thought.  We had a great time that evening at the Mill River Experience where the resort donated rooms to us, had a beautiful meal together, a bit of vino to celebrate and we gathered in a room, played some guitar and sang.  It was awesome.
Day two we cycled 64km to Summerside, the morning went well it was getting hot but there was a nice breeze and then afternoon hit.  My own personal hell at over 30 degrees with too many uphill battles for my liking.  This marked the first time I pedalled and cried at the same time as the thought went through my head that I was going to die on that trail!  But I didn't, and with the help of our team and even a friend on speaker phone for the last 3km distracting me with conversations about anything OTHER than riding a bike I made it, we all did!  That night was more guitar playing, more food and drink and laughs from our bellies like never before.  Oh the laughs, it was good for the soul!
Day 3 was from Summerside to Hunter River and 46km.  A tough ride with alot of hills, hot and hard, thank heavens there was a long big downhill stretch near the end.  That night we were hosted by a beautiful woman, Sheila at her cottage where she cooked a feast for us, and opened her home for some of us to stay.
Day 4, we were thrilled to have my dear friends and fellow Parkies Cari & Peter join us for the final two days of our trip from Nova Scotia.  I adore these two people and was so glad they came!  We traveled to Morell that day another 64km day.  The forecast was bad, heavy rain and wind suppose to hit in the afternoon.  So we tried to gear up to leave a bit early, but not before we got some cheers and high fives from an amazing group of grade 1 kids from a nearby school!  They met us on the trail, checked out our bikes, asked us questions and then formed a line to cheer "go team go" and give high fives as we cycled by them to start our day.  It was a heartwarming sight and I struggled to hold back the tears.  We made it to Tracadie before the rain hit, and it remained relatively light until Mount Stewart our stopping point for lunch.  By then the rain was hard, the wind was sideways, we were already wet and cold and the idea was tossed around to end for the day and add that 15km to the following and final day and start early.  The thoughts of making the last day longer and not sticking to the plan despite the lake in my sneakers and the stiffness in every joint from the rain and cold were not flying with me.  I said to the group it was a great idea and go for it if anyone wanted to but I was cycling to Morell that day, Dan then stood up and said with a huge smile "I knew you were going to say that and I'm right behind you"!  And with that we were off.  It was a wet, cold and very hard trek to our destination that day.  15km seemed like a 100 as we tried to pedal through the wet trail, even flat or downhill portions were hard to pedal on and were extremely draggy.  By the time we arrived in Morell my stiff Parkie body needed to be peeled off my bike as I couldn't get off on my own by some great helpers and a shower that night was the best thing I'd ever experienced!  We were lucky to have yet another hostess with the most-est Isabel cook us a feast and offer up her home for us!
Day 5, the last day, the final 54km of our trip to Elmira the eastern tip of the Island.  The weather was perfect, sunny and hot but a perfect breeze.  The scenery especially the first part was spectacular and by far the prettiest we'd seen on our adventure so far.  And the hills were never ending, and I mean never ending and the tears flowed multiple times that day as I thought there was no way to go on.  But yet again that butterfly appeared guiding me. We pushed through and not one person gave up and the finish line was so close after our final stop 15km shy of the end for lunch we could taste it.  (maybe that was just the delicious food Maxine provided for us.  We were so spoiled, Jean gave us a lunch feast fit for a king the day before and Florence & Maureen the day prior to that!).

Day 5, departing Morell and arriving in Elmira, the final 54 km's




We had as I mentioned 7 people that cycled (our Parkie three & 4 support cyclists) the entire 5 days from tip to tip.  But we had many others join us for a day or two along the way.  Shown here is the "Parkie five", myself, Paul, Dan and Cari & Peter who joined is the last two days!  During the course of the week we had a total of 20 people join us throughout the week, five of which had Parkinson's, it was incredible!  Our final day we crossed the finish line with 15 cyclists and we had a 16th for the first portion of the day!  Never did we expect to have so many join us it was wonderful!  As we approached the final 2 km of the day with Dan, Paul & myself leading the pack followed by our friends Cari & Peter and then the rest of the support riders we met my amazingly supportive husband and my dear friend Gail who rain 2.5km up the trail to meet us and ran with us to the finish line.  My husband I know worried about me all week, when I told him we were doing this trip I could see the worry on his face, but like always he's my biggest supporter and cheerleader and I am so incredibly blessed to have him and so many other amazing people always rooting for me in my corner.  We pedalled on and you could start to hear the cheering crowd at the finish, a crowd that blew our minds and overwhelmed us.  This trip all came about because of Dan and I wanted him to take the lead and cross the finish first, but in the end our friend Paul was the one who earned the honor.  Paul is more progressed than Dan and I and I'd be lying if I didn't admit we were worried about his ability to complete the 273km trip and even encouraged him to take breaks each day and drive with our amazing support vehicle driver Denis who made the trip possible.  But Paul wouldn't hear of it, he was riding and made that well known.  Paul dug deeper than anyone did, he inspired every single person that cycled over that five day period.  He taught all of us that if you put your mind to something it doesn't matter whether the obstacle is Parkinson's or something else you can achieve greatness, you CAN do anything!  He finished most days at the front of the pack, he put his heart and his soul into this trip, surprised us all and he is my hero!  Words just can't accurately explain how proud I (we all) are of him, words can't express how grateful I am for his spirit and teaching us that nothing is going to stand in his way, teaching us that when faced with adversity you can give up or you can fight on and if you choose the latter you will succeed.  He was a rockstar on this trip and nobody deserved or earned finishing first more than he did.  Tears streamed down my face as he got faster and faster as the cheers from our supporters at the finish got louder and they still flow as I talk of it or watch the video's of our finish.  To Paul, I say thank you from the bottom of my heart for the privilege of cycling with you this week, for the privilege of being your friend and for all you taught us this week!  I am in awe of you!


The finish line was a blur to some degree, so very surreal, so incredibly overwhelming and emotional.  With each hug I held back tears or they flowed without any control.  And as I looked over at Dan, the reason for all this and I reflected on a week of seeing the most giant smile on his face and hearing him laugh harder than I'd ever heard before I knew right then that this week changed all of our lives.  There was a spark in Dan's eyes I'd never seen before, he talked about future cycling trips and reminisced about previous ones.  He was on fire inside and out and I can't help but be brought to tears at what this insane idea that terrified the hell out of me did for all three of us and I think everyone else that participated throughout the week.  One crazy idea brought an entire group together in a bonding experience that I cannot even explain, taught us all things that I don't even know how to properly put to words, showed people that Parkinson's does not need to look like that cartoon image, but rather can be an imagine of strength and courage and determination.  It was all so much more than what I could have ever imagined... I had NO idea.... and I'm so grateful at all of his amazing surprises.

Post ride & a rather emotional recap of the trip with CBC Radio's Island Morning Show



Do not ever give up, dig deep & show Parkinson's
or whatever your struggle is who's boss!
You may just exceed all your expectations, crush all your fears
& have a journey of a lifetime!

The 7 of us who completed all 5 days,
all 273km, all 20+ hours in the saddle cycling Tip to Tip!
Standing - Loretta AKA 'Crash' (Dan's wife), Myself, Paul (my hero), Shawn
Kneeling - Gaylene (who rode in honor of her Dad who had Parkinsons),
Dan the reason for this crazy ride & Roberta!

Local Reporter speaking to us after we crossed the finish line!

Oh, and I should mention we raised $6700 for programs & services for Islanders living with PD!  If you'd still like to donate you can do so at:


Here are some links to some other media coverage we had:






You can see lots of pictures and video of our trip on facebook at:  



May 24, 2017

Deep Brain Stimulation for Parkinson's & Dystonia

Three years ago yesterday (after a year and a half of tests, doctors visits & alot of tears) I walked out of my Movement Disorder Neurologists office in Saint John, NB with a prescription in hand for Levodopa/Carbidopa the gold standard treatment for the past 50 years for PD.
Three years ago today I was confused, a little scared but yet relieved to finally be getting answers and torn as to if I wanted the meds to work in turn confirming my diagnosis of Young Onset Parkinson's or not wanting it to.
Three years ago today I picked up the RX & swallowed my first pill of thousands to come and started on the journey of treating YOPD.

Alot has happened in that three years, I was "officially" diagnosed a few months after treatment started, I came to the realization that returning to work was not going to be part of my future which caused me to have a loss of identity, I threw a few really good pitty parties, I met some amazing people that I now call friends and that are like family to me.  People I never would have had to the pleasure of knowing had it not been for this fork in the journey.  I somehow became a writer of sorts, connecting me with the world for advice and support.  I organized events for fellow Parkies in PEI to try and get them thinking outside the box and trying new things like horseback riding, boxing etc... I attended the most amazing health conference you can even imagine, the World Parkinson Congress, in Portland Oregon last fall.  The only conference like it where patients, doctors, scientists health professionals and more all together for a common cause.  I cannot wait to attend the next in Kyoto, Japan in June of 2019!  So much has happened in just 3 years.

And then there's the progression, the often slap in the face to ones positivity, to ones attempt to hit the gym and workout (the only proven way to slow the progression of PD), to ones focus, to ones mind, body & soul.  My motto has been Screw You Parkinsons and later Dystonia was added to the end of that line as I've developed it as well.  I knew I was progressing, particularly in the last year and despite all my efforts to fight, however in reality I had no idea to what degree.  I have been steadily adding new and increasing medications for three years now.  As the Dystonia got bad, Pramipexole was added to try and help with that and to lesson the crash from "on" to "off" from levodopa.  As mornings became increasingly difficult to get moving double doses of controlled release got added.  The time between doses increased with time and so on.   I had often wondered when talking with other Parkies who are older than I and have been dealing with the disease often for much longer how it is that I was on so many more meds then them and yet I seemed to be in much better shape, and able to workout at boocamp and do alot of things they couldn't.  And then the last weekend in April this year hit and I was given a rude awakening a glimpse 3 years later in what life would be like without my many pills a day (24 currently, 2 prescriptions, 3 types).  I got the stomach flu my children had despite all my attempts to disinfect and not get it.  I knew the thoughts of not being able to keep meds down were scary but I really had no clue as to how much.  I started vomiting on a Friday evening, through the night and into the following morning.  I could not keep anything down let alone my medication.  I missed a total of 7 pills, a dose of levodopa, a dose of pramipexole and my bedtime controlled release levodopa over the course of 12 hours.  By time time 7am rolled around & I finally could stomach taking a pill I manged to roll myself close enough to the edge of the bed to reach the pills off my nightstand and take one.  I was so stiff, in an incredible amount of pain from it and all I could do was lay there praying it would kick in soon while tears streamed down my cheeks.  About 45 mins later I thought I might be able to get to my feet, for the first time I needed the cane I had bought to keep by my bed that I hoped I'd never use.  It felt like a painful eternity to get standing and the hallway from my bedroom to the kitchen felt like 10 football fields long.  My tremors were extremely bad, something I don't usually have a huge issue with, my feet were glued to the floor, my body hunched over and it was all I could do to not just keep crying.
I posted a video that morning of my feet trying to maneuver on a Broken Bodys Journey's facebook page you can see it at this link: www.facebook.com/BrokenBodysJourney/videos/1948207135401014/

There was definitely a lesson in that painful morning along with the slap in the face I got as to what my progression had really been like.  I have to some degree despite trying to remain positive resented those pills I take everyday.  When the many medication alarms would go off on my phone many times during the day I'd still have that Ugh, eye roll kinda moment.  Let me tell you, now that I had the glimpse into what life would be like without all those pills I never want to experience it again.  I have a new found gratitude for my medication and when the alarm goes off now I am thankful I am able to take it.



So I ventured off to my bi annual 750km return trip to see my movement disorder neurologist last Monday.  This time for the first time knowing I needed more meds, as opposed to being in denial or with the mindset I'd fight a med increase again.  The Dystonia I have has gotten quite bad particularly in my calves and the pain it causes in the heels of my feet can be excruciating, and I knew PD was getting worse too, especially after the flu experience.  This time I had video's to show him the drastic difference of me "on" versus "off".  When my meds are on I can do burpee's at the gym with a bosu ball and when they aren't working I need a cane, shuffle and am in agony.

And when I'm off, particularly in the morning this is what it looks like:



And when I'm on this is the drastic difference:



So after viewing the video and over an hour going over changes in old symptoms and new ones that keep appearing with the nurse we discussed yet again another medication increase.  As well as trying medical marijuana in oil form to see if it might help me sleep more than my 4 hours a day and possibly with the pain from Dystonia... AND... we discussed Deep Brain Stimulation.  Not only did we discuss it, he was eager to send a referral to the team in Halifax right away saying that with the information I'd given and the video's of the drastic difference in on vs off that he was confident I'm a prime candidate for the brain surgery.  I always thought DBS was a great option and that I would someday get it done when it came to that, but I honestly thought I would have to fight for it, that the criteria would be so strict it would be hard to get.  I was NOT expecting to have progressed fast enough in just 3 short years since starting treatment to be considering this option now.  My mind wandered as we left the appointment to "why am I progressing so fast when I bust my ass to do everything the research says I should do to slow it down?  Why do I have to have not one but 2 progressive neurological diseases when one should be more than enough for anyone to deal with?  Why am I getting worse so fast?  Is now the right time to do DBS or should I wait longer?  What's going to happen in 10 years when I'm only turning 50 if in my 39th year I'm already this bad?  All those questions brought me to tears, and I had a little cry as so many thoughts, questions and emotions flooded me.


So for now, I am doing a pramipexole increase and documenting any changes in the Dystonia pain, wearing off time of levodopa (as it helps level off the crashes).  Once that's complete I'm going to try the canabis oil, just the CBD type (the non high stuff) for a couple weeks to see if it helps with the pain and/or increases my sleep.  If there is no effect or not enough we'll then attempt a 50/50 combo of the CBD & THC oil.  I'll be sure to post about this and my experience and if it helps or not.  And while I'm doing all that I've been talking to many fellow Parkies alot of which I had the pleasure of meeting at the WPC about their experience with DBS.  I'm grateful that my blog has created such a network of people I can reach out to for guidance and advice and support.  So to all of you thank you for that.  So far I've yet to find one person who's had DBS that regrets it, in fact when asked they have all said without hesitation yes, they would do it again.  In fact most have said the only regret they have is they wished they had gotten in sooner.  I special shout out to my friend John Alexander in Florida who took time out of his busy life to have a FaceTime call with myself and my husband where he could tell us all about his DBS procedure which he just had done recently and allowed us to ask him loads of questions.  He was in no rush and I greatly appreciate it, so thank you John!

Regardless of all of this, DBS is a big decision.  After all it is brain surgery, you are awake for 4-5 hours while they drill a hole in your skull and implant an electrode into a specific part in your brain.  It was said by a neurosurgeon while in Portland that it is the most effective treatment for Parkinson's and the most under utilized.  Combine that with the great reviews from people who've had it done and all say they'd do it gain, this is very promising.  The biggest perk for me is not only will it help PD but it will help Dystonia which is a far greater concern for me right now.  The second for me would be the ability to reduce medication drastically avoiding the dreaded Dyskinesia, which scares the crap out of me.  The process in Atlantic Canada is about a year long from time of referral to completion of the various tests to ensure you are the right candidate to when you have surgery.  So right now its a matter of me deciding not "if" I'm going to proceed with this process but rather "when".  It's alot to think about and for now it's tabled until I have a conversation with my doctors nurse in about 6-8 weeks time.



May 17, 2017

Neurological Music Therapy & how it can help Parkinson's Disease

If you haven't heard about Neurologic Music Therapy, you need to!  A simple online search will provide some pretty spectacular information and amazing video's of how it's helping countless people with Neurologic conditions and especially people with Parkinson's.

I'll start with how Music has helped me in my journey with PD.  Like many of you reading this in fact likely almost all of the Parkies reading this I don't do well in the sleep department.  Insomnia and sleep issues in general are a common symptom of PD.  I sleep about 125 hours a month.  Yes you read that correctly, a MONTH.  I average 4 hours of sleep a night, and about once or twice a month I'll get lucky and I'll pull off a 5 or a 6 hour night.  However, up until last fall I was only getting about 2 hours of sleep a night, sometimes 3.  Functioning on 2 hours sleep is a difficult task.  So I started reading a lot and hearing a lot about Music Therapy.  So in the fall of last year I made a decision to give up television something I typically sat in front of in the evenings to wind down after the kids went to bed.  I started playing guitar again after about a 20+ year break (I was never really that good at it back then, but enjoyed it) I started teaching myself how to play the fiddle, something I always wanted to learn and I turned the garage into a music room which I called "Corner Jam".  Much to my surprise in just about a week my 2 hours of sleep started to turn into 4.  I get that 4 hours sleep doesn't sound like much but in comparison to 2, that's HUGE.  I wondered if it was a coincidence that going to play music in the evenings as opposed to watching TV was why I was getting more sleep, so I played with it a bit.  Randomly I'll not hit the garage after the girls go to sleep but will sit on the couch to watch something.  On those nights, every single time, my sleep decreases.  I asked my movement disorder neurologist and his response was "it's no coincidence, music therapy is huge, keep playing instruments as long as your hands will allow you to!"

 My "strings"
 

Now sleep aside, playing music is also a great thing for memory and cognitive function, can even help with freezing and gait and also anxiety.  When I have a guitar in my hand or the fiddle, or whatever instrument I choose in the moment I get lost.  All the worries of PD and life slip away and I feel happy, content and at peace.  I even started to write songs, thanks to a bit of a reverse psychology push from a friend who's an amazing singer songwriter, Mr. Cam MacMaster, originally from PEI but now a US resident with his lovely wife and daughter living in Nashua, NH.  He has encouraged me to write (which is very therapeutic in itself), given me great tips and advice which are much appreciated.  Check out some of his music, he's awesome:  https://www.youtube.com/playlist?list=FLOi4OqStxCpRNMkAwHdPfDA  I've also been blessed with a very talented musician as my best friend Joseph (everyone calls him Joe, but I've always called him Joseph, he teases me that I'm his second mother) and he encourages me daily to keep playing.  He also has a recording studio in his house and we've had a bit of fun attempting to record some songs I've written, although I don't seem to record well, intimidating process I suppose.  So I'm grateful to these two men, two friends who support me and encourage me to play.

 
I recently got the guts to share a song on A Broken Body's Journeys Facebook page.  You can check that out at this link if you'd like:  https://www.facebook.com/BrokenBodysJourney/videos/1956119801276414/


Here is a fantastic quick video that describes the benefits of playing an instrument


I've always been a believer in thinking outside the box when it comes to therapies and treating PD, sometimes the things you would never dream could help can be huge!  Try everything, if it's not your thing, or it doesn't help, then move onto something else because we are all different.  Find your "thing", Music & Horseback riding are two of my favorite and most beneficial treatments, what are yours?


Here in little PEI we have some great services and programs for people with PD.  One of them is a Neurologic Music Therapy class every Thursday that we call "Treble Tremors"!  Our Neurological Music Therapist Shonna, helps us maintain our voices & strength, something that is a common issue with the disease among other things and we have alot of fun.  I'm pleased that she was willing to do a bit of writing for this post.  So I will end with her words!  

Hello! My name is Shona Pottinger, and I am a Certified Music Therapist (MTA) working in Charlottetown, PEI. I focus my practice techniques in Neurologic Music Therapy, which led to presenting for the Parkinson Support Group, PEI chapter – this is where I met Natasha. After this, a weekly music therapy group for people who have Parkinsons Disease was started. Read on to discover some VERY interesting information about how music has a unique way to help those with neurological conditions such as Parkinsons. 
Quite a bit of research has been going on in the science and neurology world since the 90’s, specifically with regards to our bodies and how they react to sound. It has been discovered that humans are actually wired to react to sound. The motor system – which Parkinsons greatly affects – and sound perception are entwined, so to speak. The basic fight or flight instinct humans have had since day 1 is proof of this. We physically react to sounds in a variety of ways, and our motor system is key. Hang on to this while we discuss another element: entrainment. 
Entrainment is a rhythm that our bodies cycles (walking, heart beat/pulse) can be pulled into with a regular pulse or beat. Dancing is a way our bodies entrain to the music we hear. With a steady rhythm or beat our bodies can sync up to that sound while walking. Dopamine levels are not as high as they should be with Parkinsons; this causes a break in the bodies ability to have precise motor movements and speech. By adding sound, the motor neurons increase their rate of firing, which in turn helps to bridge the break and in the end allows the motor system to engage. 
Putting these two items together (auditory stimulation in the form of rhythm and entrainment) helps those who are having difficulty in their gait and speech patterns. The rhythm helps to stimulate more firing of the motor neurons which in turn stimulates the motor movements by making up for the lack of dopamine in your system. When a gait pattern evaluation is done by an MTA, a metronome is used to provide a steady pulse. This is what can help with walking. If speech is becoming an issue, a regular schedule of vocal exercises and songs specifically geared towards the issues at hand can help increase volume and tonal quality. 
I hope you’ve found this informative as well as interesting. Feel free to contact me (musicforyou@live.com) for more information or any questions you may have. Cheers! 


 My music room "Corner Jam"



Here is another great example of what Music Therapy can do!

Apr 5, 2017

If you think you're failing as a parent, then you care enough to get it right!

Being a Mom is by far the most beautiful, rewarding, spectacular thing in the entire world.  You grow this human being in your body, feel it's movements, do everything you can to make sure they are healthy and then 9 months later give birth.  When that baby is placed in your arms you are in awe at the emotions and the love you feel for them, a love far more profound then you ever knew existed.  You now have the most important, rewarding and yet hardest job in the entire world; and there's no test, no interview just you and your tiny human and your Mom's intuition... and guilt for everything you do wrong.  Anyone that's a parent understands just how hard it can be, but parenting with a life altering disease affects the entire family and makes being a Mom (or Dad) that much harder.

I started having issues with my body not working properly in the summer of 2013 when I was still just 35 years old my eldest daughter was just turning 5 and my youngest girl two & a half.  It was almost 10 months later I was told "I think you have Parkinson's Disease" by a neurologist and started a treatment plan of levodopa (the gold standard treatment) a medication that will only work if you aren't getting enough dopamine.  Dopamine is what's responsible for smooth movements, thinking clearly, mood etc... and when brain cells that produce it die that's when symptoms of Parkinson's Disease start to show.  On September 19th of 2014 a month before turning 37 my diagnosis was official.  Then started the journey of figuring out how to live well with the progressive neurological disease, finding the right medication cocktail to move properly one which for myself seems to change once or twice a year due to progression.  To finding balance between your exhaustion and exercising to slow progression to being the best parent you can despite the changes and the things you can and can't do.  Which brings me to where I am today on the journey 3 years later.

My youngest daughter 5 year old Izabella is cute and she knows it, fearless, stubborn, funny and doesn't have a care in the world.  My eldest Samantha is 8 years old, incredibly smart, perceptive, sensitive, outgoing, caring and a 'thinker'.  She takes it all in, constantly watching, listening and feeling what's going on around her.  It makes her a very compassionate, sweet, thoughtful little girl and it also makes her worry.  Prior to my diagnosis when they couldn't figure out what was wrong (PD isn't typically on the radar for a 35 year old) there were some pretty challenging days.  Days where I struggled to get out of bed and when I did walking was difficult & just didn't 'look' right.  Days where my fine motor skills were virtually non existent and days of frustration when my body wouldn't cooperate.  It was difficult to be a Mom and hide these things from the kids when Dad works on the opposite end of the country and it was just me.  There were days I tried my damndest to hide it but failed greatly.  Those were the days my sweet Sammy would cry herself to sleep worried about Mom thinking I was dying.  It was heartbreaking and hits you to the core.

My sweet Sammy doesn't miss a beat and despite my best efforts to hide days where I may be a bit "off" she sees it all, more than likely anyone else.  If I'm having a rough couple days she jumps in to want to be Mom's helper, if she see's me doing laundry she'll tell me to go sit down, that she'll fold it.  She'll empty the dishwasher and fill it those kinds of things.  Sweet right?  Well yes and no.  Don't get me wrong, I'm a firm believer children should have chores and learn responsibility and mine have always had age appropriate chores.  However when she wants to take over these types of things because she feels I'm unwell that day it's sweet yes, but breaks my heart at the same time for the reason she's doing it.  Recently I had an off week, it's rare that happens my PD is managed very well thanks to a boat load of medication I take at extremely frequent intervals (18 pills a day, 3 prescriptions and taken at 8 different times throughout my day).  As my off week continued she became more helpful around the house and then about 6 days in I had a gallbladder attack and ended up having to go to the ER.  This just seemed to be the icing on the cake that caused total meltdown.  In the weeks following her school work started to be affected, she was being sent out of class for disruption, she couldn't focus and was regressing in her school work by a grade sometimes two levels.  All things very uncharacteristic of her.  At home she would either bawl hysterically or scream in total anger at me.  Her behavior spiraled and she started doing things she knew were wrong and became increasingly disrespectful and rude.  This is where being a parent was the toughest ever, disciplining her for things that she did that were unacceptable, but yet knowing it was my fault she was hurting and acting out.  I would be a Mom and then turn around and go bawl my face off out of sight.  The guilt was the heaviest in my 8.5 years of parenting that it had ever been.  She wouldn't talk to me at all, where as in the past after a day or two I could usually get her talking but no such luck this time.  I spoke with the guidance counselor at her school we decided on a plan to try and help her, her teacher was & is amazing trying everything she could to get her focused and back on track but it was an uphill battle.  And then when she finally opened up and started to talk came the guilt overload.  She finally sat with me one Friday evening after her sister went to bed, we cuddled and talked about all the things going on with her and she admitted she was scared and worried about me and then she proceeded to remind me of all the things I used to do with her like building sledding tracks in the backyard from the snowplow pile and sitting down to colour with her, and, and.... All things I no longer can do because of either Parkinson's or the Dystonia in my hands.  So we discussed the fact that she is right Mom can't do those things anymore and it sucks but that instead I try and replace them with new things that I can do.  Like we go to the movies, or we play music together (she's learning piano) and in the summer we go camping alot etc... all things we never used to do much of but now we do cause they are things I'm able.  We talked, we laughed and we cried together.

I've always shared PD with my kids, there's no hiding it.  But I've never gone to great lengths to explain the disease much beyond what was necessary.  However we hit a moment where a bit further explanation was clearly required.  So I explained to her that yes there are things she remembers me doing that I can no longer do because of Parkinson's.  But that I do my best to replace them with new activities and that as time goes on there will be other things I'll not be able to do because PD does get worse over time.  But that I promise that as that happens I will continue to find new things we can do together to have fun.  She asked questions about why it gets worse, how fast it'll get worse etc... all in all one of the most difficult conversations I've ever had with her.  So we talked about all the things I do when her and her sister are at school.  How I go to bootcamp to exercise and I take horseback riding lessons and fiddle lessons and how I turned the garage into a music room, and the various appointments I go to for things like acupuncture.  I explained to her that exercise keeps me from getting worse, that the more I do the slower that'll happen.  How Music Therapy helps with my memory and it's other benefits.  Essentially we discussed how all these things are what I do to take care of myself so that I stay well and can continue to be the best Mom I can be, that these things are now Mom's full time job and that I work hard everyday to do everything I can to stay well and be the best Mom I can be.  We of course discussed her behavior and how if something is worrying her she needs to ask questions and talk to me not bottle it up and behave badly and many other things.



I'm thankful to say that things have been settling down in this regard.  She continues to see the guidance counselor every couple weeks and no longer seems angry about that and has connected with her and is happy to tell me the days she goes.  Her school work is improving and things are settling back into "normal" again but it was nearly 8 weeks of hell.  I don't think I ever cried so much in my life as I did watching my poor sweet girl suffer, worry and hurt while I tried desperately to help her.  For those of you parents reading this, you are not alone in your guilt or worry about your kids well being as you try to manage this new life and disease.  I'd say don't be so hard on yourself and remember what a great parent you are because if you are worried about it then it matters to you and you care.  If you're taking steps to try and shelter your kids, or help them through while on this road then you are being proactive and that's fantastic.  But I know hearing those things and actually not having the feeling that you are totally screwing up your kids is easier said than done.  There is nothing worse than feeling like you are the cause of your child's pain and the feeling that you are screwing this parenting thing all up.  However, we are not.  We just have to keep doing the best we can and taking things one step at a time and dealing with one thing at a time.  If you are struggling with giving things up with your kids it's ok, just find new ways to be engaged that are within your abilities and talk to them.  And hang in there, we can do this!


Finding new ways to have fun with my girls!  We love playing music together!
 

They are my world!  


Here are some links to other posts, articles etc... on parenting with PD you may find helpful.

Parenting with Parkinson's:
http://natashachronicles.blogspot.ca/2015/10/parenting-with-parkinsons.html

Guilt is to Motherhood as Grapes are to wine:
http://natashachronicles.blogspot.ca/2014/08/guilt-to-motherhood-is-like-grapes-to.html

Parenting with PD, an interview with former NBA player Brian Grant:
http://natashachronicles.blogspot.ca/2016/10/brian-grant-life-with-parenting-with.html

Article in a local paper:
http://www.theguardian.pe.ca/news/local/2015/9/4/young-people-also-get-parkinsons-as-p-e-4268415.html


Mar 9, 2017

Genetic fairness Legislation PASSED!!! History made in Canada!

Yesterday 150 Parkinson Canada Ambassadors across the country along with countless others with the Canadian Genetic Fairness Coalition and Neurological Health Charities Canada helped make history!!!  Canada was the only country in the G7 that did not have laws in place to protect their citizens against DNA discrimination, but that all changed yesterday!!!

Here is a follow up interview with CBC Radio about the win!




And this was the previous CBC story:



A note to the Ambassadors from Parkinson Canada's Jacquie Micallef
Sr. Manager, Public Affairs & Partnerships:


Last night Canada made a big step towards ensuring Canadians can make‎ informed decisions about their health – without fear.  

Bill S 201,  an act to prohibit and prevent genetic discrimination, was passed last night in the House as it was presented by the Standing Committee on Justice and Human Rights. 
Parkinson Canada has been identified by the Canadian Coalition for Genetic Fairness as a leading member of the genetic fairness movement. Since day one (many, many years and 3 bills ago) Parkinson Canada and the Ambassador Network has been advocating for this legislative change. In fact, genetic fairness was named as a pillar in Neurological Health Charities Canada’s original brain strategy document developed in 2010. 

Thank you to all of the Parkinson Ambassadors for being incredible champions in communities across Canada. Over the years, Parkinson Canada has logged hundreds of engagement points between Ambassadors and MPs about genetic fairness. In the last week alone Ambassadors contacted MPs over 200 times requesting them to vote in favour of Bill S201.

Bill S201 still needs to go back to the Senate, but all indications are it will be supported.

I’ll keep you posted!

Thank YOU for helping to make this historical change!


Best Regards,

Jacquie
---------------------------------


Today was a day of celebration!!!  Thank you to everyone that worked tirelessly on this initiative and to the MP's that did the right thing by voting YES to Bill S-201!!!

It was a pleasure to be a small part in helping protect Canadians and so very exciting when I finally heard the outcome!  I would personally like to thank my MP Lawrence MacAulay for doing his part in pushing for this legislation, he was a huge support of it from my first meeting with him face to face about it in June of 2015!
Thank you all!

Here's a previous post about this issue:  http://natashachronicles.blogspot.ca/2016/12/dna-discrimination-are-you-serious.html

Natasha

Thank you Hon. Lawrence MacAulay
I know you weren't in Ottawa for the vote as you were travelling on Agriculture business.  However I know you worked hard to push this through it's stages and were a great support all along!





Jan 25, 2017

Mental Health & Parkinson's Disease... #BellLetsTalk

Well today (January 25) in Canada an initiative called "Let's Talk" where Bell Canada helps end the stigma around mental health.  It supports research, helps improve access to care ensuring psychological health & safety.  They donate 5 cents for every call, text or social media using #BellLetsTalk in 2016 6.3 million was donated. 

So I thought today very fitting for this post that has been looming in my head for a while now.  Too fearful of people's opinion's to share it.  It's really heartbreaking how something as important as mental health, but the reality is people are embarrassed of it, they feel depression or anxiety or anything related to mental health that we are struggling with makes us weak.  I say us because I struggle with it too, I never did before PD and although I like to think I didn't think negatively towards it or people who suffer; I'm guessing that with my own fear and inability to share that maybe I did.  I've said before there's the odd time I find it very difficult to write a post, that my goal of this blog that originally started as a journal to get things off my chest was to be fully honest.  That was before I decided to share it and before it was ready by as of today over 62,000 people around the globe.  Now with often 10,000 readers a month that's a bit harder to be honest about the really tough stuff nobody wants to discuss or admit.  Perhaps more so due to the friends & family in my own community that will read it, who I don't let know.  So yes I am seeing full on through my own eyes the stigma around mental health sometimes one which might simply be created by ourselves in our own heads, but there has to be an underlying reason we do that.  So today I will power on and keep writing this difficult story.

Many would think getting diagnosed with Parkinson's would easily be enough to become depressed.  And yes indeed of course that happens.  However in addition to that many people get depression, anxiety and issues with apathy as a symptom of the disease not because you are depressed you got it.  Not unlike myself, who never had an anxious bone in her body and now I suffer with social anxiety part of which is a fear of people seeing my symptoms which sounds ridiculous because everyone knows I have PD.  I try really hard not to but I do withdraw socially overall which is common.  I go out less, I interact less, I stress more.  The biggest challenge with this is the more you withdraw the less your friends and people you care about will bother with you.  Especially if you aren't talking and honest about why you're often saying no to an invite etc... The phone will ring less by a friend who used to call often, the door won't get knocked on as much and then the vicious cycle continues.  Often people will look at this as a two way street and have the attitude of "well they never call me either anymore" but if they are struggling with such things they likely won't because they're withdrawn.  If you're reading this and you are said friend, family member etc... with a loved one with PD (or not) that this is hitting home with, stop letting life get in the way, we are all busy make time for people you care about.  ASK how they are doing. 

Now, deep breath.... I see a psychologist once a week.  Dear lord I just said it.  Yup that's right, I started to go to one back in November.  I still feel embarrassed when I walk into the building and have the thought in the back of my head "I wonder if anyone I know will see me going in there".  When really I should be proud of myself for going and seeking help if I need it.  But that's just not the way we think in this day and age in our society.  Why do I go, you are wondering?  Well in a nutshell I had to give up my career in August of 2013 because I was unable to do my job.  I wasn't diagnosed yet and just assumed that the doctors would figure it out and I would return to work.  I worked hard for my career and I loved it.  When the diagnosis finally came, treatment started and it was evident that although life changing on being able to get up and walk etc... that my right hand didn't hold a pen well if at all, fine motor skills were only semi ok for very brief periods of time and so on... It was official that my career had been taken away from me because of this disease.  The blow of being diagnosed wasn't something that caused a great depression because after 15 long agonizing months it was a relief to know.  Giving up my career was a blow however and I struggled greatly with it.

However, because of struggling with said loss of career I tricked myself into believing that I had dealt with this loss.  When in reality I did not deal with it at all, I simply jumped in feet first and replaced it with being a stay at home Mom.  I only had one home with me, my little Izabella, as her big sister Samantha was gone to school by then.  If someone would ask what I did for a living I could say that, I didn't have to say well I have Parkinson's and Dystonia and I'm on long term disability.  Although I was never the Mom that had the wish of being at home with my kids despite my love for them I consumed my life with my new "career".  And then............................................  the day came, this past September when my baby got on the school bus with her big sister and I watched them drive away to their adventure for the day.  Then I turned and walked back up the driveway admittedly tears streaming down my face (which was fine, I also did with my eldest, it's emotional to see our babies grow up) and I walked back into an empty, quiet, lonely house.  I remember thinking that day "what the hell am I suppose to do now?"  To be honest I'm still trying to figure that out, hence going for counselling once a week.  I'm trying to get the tools to deal with my anxiety and to cope with feeling like I have no purpose and trying to figure out again what that is.  I'm trying to learn to be honest fully with all the changes and things Parkinson's has done both to me and for me and see things in a different perspective.  I go to try and figure out my way moving forward.

Did I come to the decision to get therapy easily?  No, not at all.  I thought about it on and off for all of September and October always making excuses over why I didn't need to go.  Always the stigma of what people would think looming.  I left the house less, I would buy everything down to laundry detergent online so I wouldn't have to go to a store.  I would have days where I would not shower or get dressed other than to take the kids to their activities or the usual things I did/went to.  I said no to invitations a lot and subsequently those are less and less.  I didn't answer the phone often and then it rang less.  I felt like I had no impact in this life, no purpose and that I didn't know what I was suppose to do moving forward.  Thankfully I'm now starting to figure that out again.  Thankfully I didn't let it persist for very long, I realized quickly that staying in the house, not getting dressed or showering was NOT a good thing and not beneficial in any way.  Seems like a no brainer but if you are struggling it's easy enough to happen.  So I started with my calendar.  I scheduled something every day of the week with the exception of Friday.  Something I had to do or attend every day that would force me to get dressed and out of the house.  That in itself made a big difference.  If you are reading this and this is hitting home to you, I urge you to talk to someone AND to schedule yourself.  It made a huge difference in how I felt by getting out of the quiet, empty house even if it was just for an hour.  And then going to talk to someone who doesn't know you, has no opinions of you or your life and is completely impartial is a great thing to do.  We can have people that care about us give opinions often,, suggestions, ideas etc... their intentions are good, no doubt about it.  But they do not understand what you're going through no matter how well you try and explain it and then other things will factor into it like your own relationship quirks, opinions etc...  This aside from embarrassment is another reason that virtually nobody knows I've been going for counselling. 

I did share at our last local support group that I was going to a psychologist and even though these people are like my family and I'm likely able to be open with them more than anyone in my world I felt like there was a cement block on my chest as the words were coming out of my mouth, I was consumed with a panicked anxious feeling saying it out loud.  Why do we do that to ourselves?  Let's STOP doing it.  Let's not be ashamed when we are struggling emotionally with something.  Let's not be embarrassed if we are feeling anxious or depressed.  Let's not bottle everything up because we are too damn worried about what someone else thinks.  But sadly we live in a world of gossip and judgment and we have allowed ourselves to be victim to that and ashamed.  I have no doubt there will be a text, a Facebook message, a conversation in person or on the phone with people I know about this blog post.  "Did you see Natasha's blog, she's going to a shrink?"  It'll happen, some will likely be in the context of wow I thought she was so well I would have never thought she needed a shrink... where as the more 'judgy' types will have the she's crazy she should have been going long ago.  But you know what, neither of those matter.  It doesn't matter if someone see's you walking into the office of a mental health professional either.  If you are feeling low and you can't get out of your own way and you can't get past the funk you are in, to hell with everyone else and what they think.  Go get help!

So today I thank #BellLetsTalk for doing their part in spreading awareness and ending the stigma.  Today I feel terrified & brave all at the same time.  But I'm gonna focus on the brave part. I'm gonna enjoy this big sign of relief and feel the joy in being fully honest, not embarrassed and REAL.  Because life isn't always sunshine and rainbows and that's ok!  Let us all be brave!

Wise words by the great Muhammad Ali, who had Parkinson's!
Don't surrender, as the inspirational Michael J. Fox says....
 


If you're in Canada and on the Bell network send as many texts as you can today, tweet, share but most importantly TALK.  You can even put a custom frame on your social media posts..  Visit www.letstalk.bell.ca for more information.