Thursday, August 19, 2010

parkinson's disease

so on my birthday my mom was officially diagnosed with parkinson's disease. and man am i struggling. i'm going to attempt to tell the story from my point of view. as it's my reality and it will hopefully help me move forward. i'm also going to try and be as brief as possible. lots of things will be minimized in the interest of my mom's privacy and my time. :)
it's been a rough couple of years leading up to this point. two and half years ago she had, what we were told, was a mini stroke. from then on her health has been at a steady decline. she worked at an elementary school and loved it. unfortunately she lost that job earlier this year. she was apparently having trouble learning some new systems put in place. as she tried to go out and look for a new job she realized she couldn't remember basic things. my parents tried to apply for disability for her and requested her medical history. that's when they discovered that the er doc had put in her file that she had an anxiety attack, not a stroke. those of us that saw her in the hospital know that it wasn't simply an anxiety attack. you don't lose your memory and forget who people are with an anxiety attack. however, we now think they just didn't know what it was so that was the easy thing to put. because of that, she couldn't get disability. turns out this will end up being a blessing in disguise. we all knew something was wrong, therefore they decided to do a whole bunch of neurological testing. the neurologist agreed that there was definitely something wrong. two months of testing ensued. and finally the diagnosis on august 13 of Parkinson's. the episode two and half years ago was probably linked and the start of it all. it's a complex disease. there are three variables. cognitive, language and tremors. most people associate Parkinson's solely with tremors but for my mom that is the least of her problems. her breakdown is as follows: she's most highly affected in the cognitive, moderate in language and mild in tremors(so far only in her hands). they can give medicine to help the tremors, but not for anything else. she's also rapid onset. they were surprised just how much she's declined in the two months of testing. it's really hard for me to absorb the fact that my mom, as i know her, is no longer.
and here is the part of the story where i cry and cry.
i've seen how much she's changed just in two years and it's hard. it makes me so sad that my kids won't know her the way i do. my older two nieces are so lucky in the amount of time they had with her when they were young. i wish my kids had that. but now she struggles to be around kids. and that's hard for her because she loves kids. she was the neighborhood mom when i was growing up. everyone loved her! she struggles with any noise and has to wear ear plugs so she doesn't get over stimulated. over stimulation makes her shake more and she becomes very confused. it's a hard thing to watch. it's not who she is.
i struggle with the thought of her not 'being there' because my mom's always had my back. of anyone in our family, she gets me. there is a reason that my first daughter was named after her and no coincidence that my second daughter was born on her birthday. we understand each other. our need for solitude. our introvert tendencies. our loyalty. our tendency to hold things in beyond a healthy level or think we are strong enough to deal with everything on our own. i share my mom's quiet testimony of the gospel and desire to lie low in that regard and let others take the lead. but i will say she is braver than me and will not say no. maybe that came with age. i hope so because that will give me hope. she's always been so supportive of my dad with work and church callings. that example has made it easy for me to do the same with kg. she's very accepting and not judgmental of anyone. she's always accepted me for who i am and stuck up for me when my dad couldn't grasp my need to be 'different'. now i feel such a fierce need to defend her when i feel like she's being pushed to hard or not given the solitude she needs. she's always respected my need for independence. we don't need to call each other or talk often because we both just know how the other is doing. it's instinctive. mom's not a talker so i just know if something's wrong, she'll call. 'no news is good news' she's always said. her love of reading, crocheting and baking cookies is why i love those things. and she's already losing her ability to do those things because she can't remember. she's always been so goofy and over the last couple of years that's dwindled. she's also always been somewhat clumsy, hitting her elbows at every turn. it's actually quite endearing except for that it's getting worse and not just elbows anymore. i unfortunately inherited that from her as well and the 12 or so mystery bruises on my legs are my proof. :)
it's just really affecting me. i've cried pretty much everyday for weeks as we got various test results back and it was apparent it was a progressive, degenerative disease and she's never going to be the same. and then with the parkinson's diagnosis. it's nice to have some final answers but hard that it's so final. and it's hitting her hard. and i'm pretty sure my dad is in denial.
she's just too young, at 60, to be going through this.
click here to read an explanation on Parkinson's
i hope to participate in a walk or something to help raise money for a cure sometime next year. i'm doing my research. if you know of anything, please pass along the information. much appreciated.
please keep my mom and family in your prayers.
with love,


Colleen said...

i am so sorry to hear about your mom. she is amazing. she is well loved my my family. let me know if you need anything. even to vent. tell you family hi.

Heather BT said...

I am so sorry that this is happening. She sounds like an incredible woman. Prayers for strength for you and yours.

Shannon Lytle said...

Angee, I'm so sad for you. I can feel your pain in every part of this post. You're so privileged to be able to say how strong the bond with your mom has been all your life. What a beautiful tribute to her. Although your girls may not get to know her the way you've always known her, I do believe you will be the kind of mom to your girls that your mom has been to you. Hang in there.

Shannon Lytle said...
This comment has been removed by the author.
La belle mère said...

Oh Angee! I was way behind on your blog and I've been kinda out of touch with the family and I hadn't heard. I am so, so sorry. I can only imagine how devastating.

I was sorry that we didn't ever get to talk at the reunion, but it sounds like neither of us were on our A-game. :-/

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