May 25, 2016

Let's talk Dystonia...

Unless you have it, or know someone who does you likely have never heard of it or have any idea of what Dystonia is.  Wikipedia defines Dystonia as:

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.  the movements may resemble a tremor.  Dystonia is often initiated or worsened by voluntary movements, and symptoms may "overflow" into adjacent muscles.  Treatment must be highly customized to the needs of the individual and may include oral medications, botulinum neurotoxin injections, physical therapy and/or other supportive therapies, and/or surgical procedures such as deep brain stimulation.

Now that you've read about what a boat load of fun dystonia can be you're likely wondering what does this have to do with Parkinson's Disease?  Well, as I've said a million times before PD is the gift that just keeps giving.  Not only does it hand out the typical motor symptoms of tremors, rigidity/stiffness, stooped posture, slowness of movement and such.  It also has lots of fun non motor symptoms like loss/decreased of sense of smell, bladder & bowel dysfunction, depression, anxiety, insomnia and the list goes on.  As if ALL of that isn't enough Parkie's tend to also get dystonia as a symptom of the disease.  Yup that's right, because one degenerative movement disorder isn't enough, why not give them two to deal with simultaneously?  So those of us lucky enough to get this extra gift must wrap it up pretty and do the best we can with it.  You can get dystonia on it's own or as a symptom of PD and for some reason dystonia is also more likely to present in young onset patients with PD than older ones.  I guess that's PD's twisted sense of humor kicking in, saying "well, you are in better shape likely than an older person who gets PD so we best throw some curve balls in there for you to make it a tad more challenging!"  Didn't you know that Parkinson's is one funny disease, I suppose that's why I laugh so much at it and make jokes of it often.  After all one might as well laugh as to cry.

I started to feel the effects of Dystonia first in my hands, when you get it in your hand they call it focal dystonia and sometimes even writers cramp.  Initially it only hurt if I tried to hold a pen to write or use my hands for anything.  As time went on however they started to ache and pain 24/7 right around the time I started having trouble with my feet and often could barely stand on them the pain was so bad.  I had myself convinced I had planters faciatis, subconscious denial perhaps?  I get acupuncture treatments in my hands every 3 weeks, I highly recommend it.  Although it doesn't solve the problem I now only have pain when using my hands for any length of time as opposed to all the time before.  That is a HUGE improvement.  Not to mention acupuncture from a real acupuncturist can do wonders for a million other things whether you have PD or not.  But I digress... A year ago my movement disorder neurogolist confirmed that my self diagnosis was incorrect and simply wishful thinking and in fact I had dystonia in my calves and the twisting of the muscles was pulling on my achilles tendon making the pain refer into my feet.  He suggested botox injections which is the standard and apparently very effective treatment of dystonia.  My mind however instantly goes to that's poison being injected into your muscles and no way am I doing that to myself.  He suggested a medication called pramipexole (or Mirapex) which would be effective in helping not only the dystonia but levelling off my crashes from levodopa during the "off" times.  I of course refused any more medication yet, you can read about that in the previous post.  Long story short by the time last fall hit and I could barely walk let alone exercise I finally listened and added the new medication.  It did wonders for my dystonia, I could walk again without being in extreme pain and as he said I was able to get working out again. 

Now 7 months later I'm still walking pain free, still taking the added medication, still going for acupuncture every three weeks in addition to physio & massage therapy and still working out 5/6 days a week.  However, the pain is resuming when exercising and in the moment can be bad enough to bring tears to my eyes.  I'm not sure though that it's actually the pain doing that but more so the frustration I have because of it.  It seems that dystonia is much harder to deal with and treat than Parkinson's is over all.  Now I'm sure I'll have days where the opposite is true, but from my standpoint today PD is managed well with meds & exercise where the other isn't.  I've found wearing ankle support braces and working out shoeless helps however that will cause problems in my feet down the road so it is merely a temporary solution.  I will be returning to Occupational & Physio therapy to see if we can try something else, I may up the acupuncture treatments for a while as well and definitely must get those calves as painful as it is massaged more regularly.  Long and short is my goal is to find a solution that doesn't involve botox injections into the muscle.  Sadly however it seems my cycle is about 6 months of fighting it and eventually giving in.  Whatever "it" may be, new meds, increased meds etc...   What frustrates me the most about this scenario is that when it came to new medications or increases my initial response was "not yet, it's too soon" when I would fight it.  I always knew I'd need to do it at some point.  However with botox injections my mind was set on never, ever, ever... and yet now I'm saying "last resort" and it feels as though that last resort is getting closer and closer.  If any of my fellow Parkie's reading this is dealing with dystonia and you have found an alternative treatment to the injections I would love it if you'd take the time to send me a note!

At the end of the day I'm still doing very well, I'm still working out even if some days it frustrates the hell out of me and that is keeping my body working better plus it's helping with sleep issues and stress/anxiety.  So giving it up on that is definitely not an option.  It keeps me healthy, it keeps Parkinson's in check and from getting worse.  Sometimes this broken body's journey hits some forks in the road where I have to find solutions to issues or decide which road to take.  These forks are never easy and I suspect as time goes on will become even more difficult, but the important thing I try and focus on is that I still have choices.  I can give up, or I can keep being stubborn and fighting.  And I have learned to forgive myself for giving "in" on some of my mindsets knowing that sometimes giving in doesn't mean you've given up, but rather that you have made a hard choice to improve your quality of life even if there's a cost.  And although you may have many great supporters in your corner you are on your own and the choice & direction you choose has to be made by you!  Struggle with as many of them as you want, but regardless of the frustrations always take a minute to find the joy cause it's there even on a tough journey!

May 23, 2016

"A mind that is stretched by a new experience can never go back to it's old dimensions" ~ Oliver Wendell Holmes Jr.

Two years ago today I was sitting at the Saint John Regional Hospital just a month after seeing a neurologist there that told me he thought I had Young Onset Parkinson's.  This time I was waiting to see the Movement Disorder Neurologist that specializes in the disease.  I remember feeling sick to my stomach wondering if after a year and a half of unknown, a year and a half of days where I had next to no fine motor skills, a year and a half after having many days where I could barely get out of bed and walk, a year and a half after many attempts to console my oldest daughters tears because she was scared her Mommy was dying.  A year and a half of hell...

I left that hospital 2 years ago today full of fear, anger, sadness but yet relieved.  I left after a 2 hour session with the Parkinson's Nurse followed by an appointment with the doctor; with a prescription in hand for levodopa to be taken 4 times a day.  The gold standard treatment/medication for Parkinson's Disease and another appointment date for 6 months later to confirm my diagnosis.  Because once diagnosed you are officially uninsurable for life (ridiculous, but that's for another post) and "labelled" they tend to wait on their official diagnosis until they can confirm the treatment works even if you have it, particularly in young onset cases.  Or so my Doctor tends to do particularly on early stages of the young according to his nurse.

Now, two years later life is so much different.  Although the medication did miracles in the fact that I had windows of opportunity to use my hand and the stiffness was much better so I could move freely it was short lived and I got worse in a year.  Dystonia in my hands, feet & calves was added to my long list of symptoms of the disease, that's another movement disorder that you can get on it's own or as a symptom of Parkinson's, particularly in Young Onset.  So now two years later after fighting it & my Doctor for six months I am taking 3 levodopa carbidopa a day, 2 controlled release of the same medication at bedtime so it doesn't wear off in the middle of the night and curbs the agony and 6 pramipexole a day, 2 at a time.  It irritates the hell out of me that my alarm goes off on my phone 7 times a day to take meds.  However after fighting my neurologist on the new medication this time last year I was a mess and unable to run anymore or do any real exercise.  Come last fall he assured me that if I would just trust him and add the pramipexole I would most likely get better and be able to run and do bootcamp again.

Now trust, that's a tough one for me.  I have no problem trusting that my doctor is an expert on Parkinson's Disease.  I have no problem trusting his advice for treatment when it comes to exercise and other alternative treatments.  However when it comes to medication I fight him every time.  Taking pills drives me mad and having to add more pills & new types in what feels like a short amount of time with this degenerative disease is a tough pill to swallow.  I'm going to turn 39 in October and I fight with every bit I have in me to not get worse and when I do and I need more meds it's a big blow.  However I'm trying to get better at trusting him in all avenues.  After all he is right every time or has been so far.  When I finally caved last fall and took the new med in addition to my levodopa I did get better.  As promised I was able to get working out harder again like I had before.  Now I do bootcamp or weight circuit at least 5 times a week sometimes 6.  It's still hard, but it is for an able bodied person, I still modify lots of things that my body can't do, but I am doing it.  So my advice to my fellow Parkies reading this is to NOT be like me on the trust side when it comes to your Doctor.  Do your research, be your own health advocate but trust their recommendations too and don't be as thick skulled and stubborn with them as I am.  I am working on getting better in this area.

Overall 2 years later life is good.  I'm very active, I work really hard to keep my body in check with exercise, the only proven way to slow the progression of this disease.  I still roll my eyes with every pill I have to take, but I know that I cannot live without them.  It's just part of the journey and one you have to accept.  And because of those 11 pills a day 97% of the time anyone that sees me would never guess I had YOPD and likely have a hard time believing me when I say I do.  Because of those pills it's rare I ever have to be out and about during an "off" time when they are not working, so unless you're very close with me or live with me you've likely never seen what it's like for me to complete a task if they aren't working.  I am determined and stubborn to stay active, healthy and keep my body working as best as it possibly can for many many years to come.  I am always thinking outside the box on therapies & currently trying to learn how to play the fiddle and possibly the drums to help with the cognitive decline that can come with PD.  I refuse to give up when it gets really hard, like I said in my last post we shouldn't say can't, just I'll try.  This is my journey, one I most certainly did not choose but rather had it forced on me but I can choose how I'm going to accept it, how I'm going to live with it and what my attitude will be about it.  And my attitude always has been and will continue to be "Screw You Parkinsons" cause you picked the wrong chick to mess with!  When I have my down and out days of feeling sorry for myself I try and kick myself in the rear and get that motto back front and center and if you ever see me being any other way then it's time to worry and time for you to start kicking me just as hard!

I am 38 years old and I have Parkinson's Disease.  I have known I've had it for 2 years now and I will have it for the rest of my life.  I am an a mother of two beautiful little girls and wife of an amazing husband.  I AM more than my disease (and so are you reading this) and I am going to live well on this journey and continue to find the joy at every turn, even when it goes downhill here and there.  And I will always be grateful for the people in my life that stuck with me through this & love me enough to pick me up on the down and up hill battles.

I've gotten alot of friend requests on Facebook through this blog and therefore I created a Facebook Page.  Here's the link:

May 16, 2016

"It's hard to beat a person that never gives up" ~ Babe Ruth

I am blessed with two beautiful daughters, who could not be more opposite of each other in their personalities.  Samantha is a busy bee with a brain that I don't think ever shuts down.  She's not quite 8 yet and does math problems for fun, I can assure you she does not get that trait from her mother!  Four year old Izabella on the other hand is very smart but also very lazy.  When doing any kind of learning or work with her she often after a few minutes gets bored and will say "I can't do it, it's too hard".   Her junior kindergarten teacher I'm sure has had some frustrating moments with our spunky little girl.  But one thing she always stresses with her is:  "We don't say can't, we say I'll try"!  Wise words from a teacher of little ones don't you think? 

Such a simple little phrase that we should all adopt in our life, especially those of us with Parkinson's.  All too often I speak with people with PD who have in a sense or in some capacity given up.  It angers me, frustrates me and makes me extremely sad.  Don't get me wrong I have my give up days too, we all do and we're all entitled to them.  But what's important is that we do not allow ourselves to stay in that place for very long.  Those pitty parties will always come & go along with the hissy fits and perhaps even some major anger moments and you know what?  It's ok.  We have a lot to be angry over.  However this attitude that I "can't" needs to be always overcome with "I'll try".  The thought process that you used to do something but now it's just too hard so you give it up needs to get drop kicked out of your mind.  Yes, it may be harder, it may take longer but just keep trying if you love it enough.  The assumption that something you've never tried before can't be done shouldn't be there, because you just don't know until you try.  This applies in all areas of ones life, socially, physically, mentally.  And not just for people with Parkinsons.

Recently our Parkinson's group tried a boxing class for therapy, it was very well received by the group and 11 people came out to literally kick some Parkinson's ass!  And that they did!  From young onset like myself right up to senior with severe tremors and every single person gave it their all!  Some that were there hadn't done any real form of exercise in ages and they worked their butts off.  I'm always preaching about how the studies prove that exercise is the only proven way to slow the progression of PD.  If you are told there's this miracle fix that can ensure your body works the way it does (or maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn't you beg me for the secret?  Well, it's no secret, you just have to get up and move the more the better.  If you say you "can't" run anymore "try" walking.  If you say you "can't" do aerobics "try" water aerobics.  "Can't" handle impact on your feet "try" biking.  Your balance is bad and you say you "can't" because you'll fall, then try a stationary bike with a good seat, or chair yoga!

The thing is we all CAN exercise in one form or another.  The key is to being open to trying new things.  Boxing isn't for everyone but those 11 people came and they "tried" and I bet you that many of them were worried they couldn't do it, but they did and they all want to do it again!  It's awesome and I shed some tears on the drive home that day because I was so very proud of all of them.  I horseback ride once a week for therapy, it works on my balance, leg strength and posture.  All serious issues with PD, so my instructor and I are planning a "Parkie's and Ponies" day soon.  It won't be for everyone but just "try" it.  Do not assume that you can't do it no matter how far along you are in your progression.  There are some super lazy horses out there that you can hang out on! 

The reality is that many of us tend to get bored of exercise.  If you're that type of person than you simply have to "try" more.  And you know what, some things even if you love them are GOING to be hard, way harder than they ever were pre PD, but it does not mean you cannot do it, you may not do it as well, but just do it to the best of your current ability.  I am back doing bootcamp again and every time I register for a round of it it's harder than the last.  However I refuse to say I "can't", I have to modify all kinds of exercises because my body just isn't able to do certain things but that's ok.  It's hard, really hard but when I do it and stop saying I can't the benefits far outweigh how tough it is.  I feel better, my mind is less forgetful, my sleep has a slight improvement, my body works better and my medication seems to last longer so I have fewer crashes.  It's hard as hell but it IS worth it.  In fact since finally listening to my movement disorder neurologist & adding a second medication of Pramipexole to my Levodopa I have been able to get back exercising harder like before, something he told me would happen.  I struggle with listening to my doctors advice sometimes because I hate pills and I hate progression so I fight both sometimes not to my advantage. I'm working on that.  But between that & exercise I was able to go from a 2 on the stages scale (which is about where I was at last summer 5 being the worst) back down to a 1 as of my assessment last week!  Whoop, Whoop to that!  So do not tell me you "can't" improve because if you work hard & "try" you absolutely can!  I'm not saying you should all go sign up for a bootcamp, no it's not for everyone but find something that is hard for you but that you CAN do because you are determined to not give up and you'll try, try and try again... 

Variety can be the spice of life and as long as you are not giving up and you keep trying than you are a success story!  Trust me your body, your mind & that damn old friend you never wanted Parkinson's will thank you for it!

Our first (of many) Parkinson's Boxing Class!
Not one of the 11 people with PD in this picture said "I can't" that day,
they all tried & they all ROCKED it!
PD Boxing Day participants & the great crew at Island Impact Martial Arts & Boxing who led us!
Keep trying new things, think outside the box!
Radio Interview leading up to it: