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Learning I have Parkinson’s…

Learning I have Parkinson...family photo june 30, 2012
Today my mom blogger friend Ann from Doodles and Jots and I are writing about our experiences with Parkinson’s Disease for Parkinson’s Disease Awareness Month (April). Read Ann’s story here.

(WARNING: this is a very personal post!)

Hi there! How have you been? Answer me in the comments, I’d love to know :)

(Originally written in April 2014) You may have noticed if you have been with us since the beginning, things have changed. I used to post almost every day, but for the last year or so I haven’t… Things got slower in terms of activities and especially crafts, Nico noticed he could fail at things and gave up on things he couldn’t fully do himself, mostly crafts or because it took too long (that’s about 2 min for a then 3 year old).

There was also our move from Châteauguay, Québec to Calgary, Alberta. It was a big change and lots of adaptation for Nico even though he was born in Calgary, he didn’t remember and had a hard-ish time to adapt to the language difference. You can read about it here.

Then there is a third huge reason I was ignoring for over a year now… A little more than a year ago my health started to decline. I was walking slower, my knees were hurting, it took me longer to go up the stairs (hard to avoid when the bedrooms are on the second floor), I also felt more tired than usual and also tired out faster. We attributed it to the warm and extremely humid Montréal summer, colder weather came and we found mold in our rental, since I’m allergic to mold, we thought that that was the thing causing me problems… And this new symptom showed up, every time I walked in stores or for longer distances, my toes curled under my feet, making it almost impossible and very painful to walk.

We moved to Calgary early summer (end of May), things kept getting worse, I could barely walk, my legs were not always responding when I needed to move. I could sit there for 5 minutes waiting for my legs to move, trying to will them to move. Getting mad often worked to get going, not sure why though… My hands were shaking a lot, which made typing a tedious & slow job, eating wasn’t much easier. I had big trouble walking or moving in general and even just getting up from a chair was a slow and tedious process. I felt very stiff in general. My chiro tested for Parkinson’s shake and it was not, phew! She said that it was what they call essential shakes, everyone has those but controls them. I couldn’t control them and my legs at time anymore, why? At first she thought my brain was fried! No joke! The connections are fried up due to stress, bad chiro (old chiro), eating habits and kid.

It was still bugging my chiro that the treatments weren’t sticking as well as they should so she bugged, and bugged, and bugged me to see a doc who could ask for an MRI (from June to Oct. 2013). I finally went to see the doc and he freaked out when he saw me, referred me to a neurologist and requested and MRI. I got the appointments within about 1 to 1.5 months, which is a record here, since there is normally a 6 month to 12 month wait. What they don’t warn you about an MRI, is that it is REALLY LOUD! And that despite ear plugs and cushions on my ears. At first I thought, the noise was the hospital’s fire alarm and freaked out a bit but I was stuck in the tube so not much I could do, then the sound changed so I knew I was ok. Then they surprised me with an injection after 10 minutes of it and stuck me back in for another 20 minutes. I had an enormous bruise from the shot for 3 weeks and a blinding headache the rest of the day. All that to reveal my brain was fine and had no lesions. I saw the neurologist which referred me to the movement disorder specialist (who is also a neurologist) after a 4 hour meeting/exercises and testing.

Learning I have Parkinson... Nico & I, sept 21 2013
November 29, 2013 (a day I’ll always remember), visit the movement disorder specialist. At that point we had bought a wheelchair so I get wheeled in, about 10 minutes into the appointment while talking with the intern the fire alarm of the building goes off, we think it’s nothing until they announce to evacuate! Once again I get rolled out. Takes about 45 minutes to an hour before we can go in so we go into another building nearby to warm up and go on with the appointment the best as we could. After we get back in, we finish up with a bunch of exercises/movements to see how I move. The intern talks to the doc for a while then they both come in, she asks mostly the same questions and asks me to do the same movements, also makes me walk and gets really scared I’ll hurt myself.  At this point, I walked leaning forward running like a duck/goose charging, but I always manage to stop before hitting the wall. She asks the intern what she thinks, the intern hesitates and carefully guesses symptoms of Parkinsonism. The doc on the other hand is calling it full early onset symptoms of Parkinson’s Disease… You can imagine that I was crushed at hearing those two words, but as bad as it was, at least now I had something to target, something to fight! Wait, I know nothing about this disease, other than the uncontrollable shaking of arms, the head etc. that I had seen Micheal J. Fox experience on tv…

The specialist put me on Levodopa/Carbidopa right away, gradually increasing the dose until as she said: “I felt normal again”. Do I remember what that is? Not sure… The pills showed improvement in my symptoms right away.

I still don’t know much about it, the shaking, the stiffness, the slowness, the diminished dexterity, the toes curling under the feet on longer walking periods and the almost constant tiredness is what I dealt with for the last year. Most of those are gone with the pills, however a bad night’s sleep or cold/bad weather brings them all back to a higher degree, not as bad as before the pills but stronger than usual. The one symptom I can’t seem to get rid of is the tiredness, it’s almost always there.

During that time many people wondered what was wrong with me, some called me lazy and tried to tell me I wasn’t doing enough to please my husband or doing enough outings/activities to spend time with my child. I already felt like the worst mother/wife ever, thanks for kicking me while I was down, you know who you are!

It obviously has been hard on every one in the house. My mother (who lives downstairs) helps as much as she can even when she hurts and blames herself for me having this, even though it’s not her fault (not genetic). Merci Ma! While Alex wasn’t at work, he did everything for me (not always well but he tried ;) ), now back at work and with me on pills he has less to do but I know he still does more than many hubbies out there.  Thank you Alex! Nico has had a rough time, always wanting to be with me (on me) or having me sit on the ground to play with him (which is still difficult but doable) and at night he wakes up often and has me come over for hugs (I think he’s checking on me). Désolé et merci ma petite peanut.

Learning I have Parkinson...family photo june 30 2012I may be cured in 5 years or I may be a vegetable, it’s scary and I think about it quite a bit but I try to enjoy life as much as I can. We just don’t know… I want our life to be back to normal again but chances are slim…

This post was very emotional for me to write, I cried often thinking about it all and it took several months to write but I needed to write it, so we can look back at it and remember. I’ve been pondering for over 2 months how to finish this post… I can’t finish it as this is not over, many questions remain with no answers and it will be so until the docs find out more about this weird disease.

Don’t forget to read Ann’s post!

(2010)

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11 comments to Learning I have Parkinson’s…

  • Val, I’m so sorry that this has happened to you; I know what a devoted mother you are to Nico and I’m sure that all 4 of you are shaken and worried sick. I’m pulling for you and sending positive thoughts your way!
    Erin recently posted..5 tips for proper nutrition outside of growing seasonMy Profile

  • Ann

    Sounds like the Sinemet was life changing for you! I hope it continues to keep you going and I really am hopeful for us for the future. My grandmother live to 96 with PD! There are also so many more drug and treatment options already for us.
    In addition to everything we wrote about this disease can also make you feel very alone so it is nice to have a friend that understands. Thanks for posting with me today!

  • I hope that you will be cured. Much strength to all of you as you find answers…
    tricia recently posted..Multicultural Children’s Book Day!My Profile

  • Thank you for helping us understand more the effects of this disease. Wishing you continued improvement and health!
    Elisa | blissfulE recently posted..2015 AMEB awards ceremonyMy Profile

  • *Hugs* Valerie! Thanks for sharing your story. <3
    Terri recently posted..Puff Paint Ski Mountains: Exploring Andorra Through ArtMy Profile

  • Ute

    Thank you, Valérie, for sharing this with us. I know a bit about Parkinson, having a few friends who are living with it since several years. I really hope you have all the support you need and that you have friends who cheer you up when days are not so good. – I can do little, I’m far away, but I’d love to know more about your journey. Keep on writing – if it’s not ok with typing there are dictation adds that may help you?
    I’m sending you a biiiig hug. xxx

  • I am so glad you are writing this! I hope you do get cured in five years.
    maryanne @ mama smiles recently posted..Learning About LadybugsMy Profile

  • Freddy Roach, the famous boxing coach, was diagnosed with Parkinson’s Disease in his early 20′s. He was a boxer and got hit in the head a lot from that and that may have been contributory though there needs to be an underlying predisposition I believe. Anyway, he has kept his Parkinson’s from rapid decline, his doctors think, by being very active. He trains many, many top fighers including Manny Pacquaio and he works with pads with them in the ring.

    I have a feeling that as much physical activity that you can do will help but please check with your doctor. There also might be exercises that work better for you … maybe someone can help you figure out that on the days that you feel up to it. Maybe stretchy bands? Or some restorative yoga poses.
    PragmaticMom recently posted..#TeamPuracynPlus GIVEAWAY for Active KidsMy Profile

  • p.s. My father had Parkinson’s Disease.
    PragmaticMom recently posted..#TeamPuracynPlus GIVEAWAY for Active KidsMy Profile

  • […] Today my mom blogger friend Valerie from Glittering Muffins and I are writing about our experiences with Parkinson’s Disease for Parkinson’s Disease Awareness Month in April. Read Valerie’s story here. […]

  • Angela

    I read your post and your friend Ann’s and I just want to say my heart really goes out to you both. I know a little about Parkinson’s but not much. I came across your page because I was searching for information about Brazil (you participated some years back in around the world in 12 dishes). Anyway, I really just randomly stumbled across your blog, but I just couldn’t continue on before leaving you a note of encouragement. I pray that you know God’s love for you and that he gives you encouragement daily as you walk through these tough days. “He gives strength to the weary and increases the power of the weak.” This is a promise from the Bible that help me through my own struggles with fibromyalgia & thyroid disease. Thanks for sharing your story!

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