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Serenity Now

So there's some stuff I haven't written about, for no real reason other than it's All Very Unpleasant, and I'm Very Tired of All This Unpleasantness, and would really, truly rather tell you guys nothing but funny stories about my kids and post pictures of cats like a proper blogger stereotype. But at this point I'm straight-up omitting a bit of narrative here, so let me get you caught up. 

My mom was diagnosed with Parkinson's. Awhile ago, actually. I'd noticed the hand tremors but was quick to write them off as something similar to mine, but they were getting noticiably worse from visit to visit.  It's why she didn't come here for Christmas -- the symptoms have progressed to the point that travel is super difficult and (so far) her treatments have led to far more negative side effects than positive results. She's seeing a new specialist next month, so I'm hoping she'll get some better options. 

It's been a very different experience than my father's many illnesses, which were always punctuated by specific "OH SHIT WHAT NOW" moments of disaster and hospitalization. Every time I'd drop everything and get in the car, there was this dark cloud of this time could be it lurking in the back of my mind. But I'd go, the current health crisis would pass or stabilize, and I'd head back home. Rinse and repeat, for years. Until it, you know, actually WAS IT. 

(Six years ago, this month.)

Parkinson's isn't like that, obviously, and I guess I was initially so super optimistic about its treatability/manageability that I thought things wouldn't change all that much. That's not turning out to be true, and it sucks. 

And that's all I've really got on that one, for now. My mom is a Christian, though, so if you're the praying sort I know she would be super touched and encouraged if she could be in yours every now and then. 

Also around Christmas, I found out that my sister had a brain tumor. Pressing on her brain stem, affecting her balance and hearing.. She had surgery to remove it yesterday. The surgery was supposed to be at 1 p.m. so I started full-on panicking when I hadn't heard anything by 5:30, only to find out she hadn't gone in until 4. I finally got the news that the surgery was over and "went well" around 9. So less International Women's Day for me and more International Low-Level Freaking the Fuck Out All Day. 

But. It went well. She's okay. 

 

I stopped by Noah's classroom yesterday and found this hanging on the door:

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You and me both, kid. You and me both. 

Comments

Erinwithans

Sending you and yours good thoughts. Medical things are so hard.

Becki

A.B.S.O.L.U.T.E.L.Y. Will write her down on my Prayer list. All of you. Will also be sending you a PM on your FB because I would like to send something that has helped me (Dad died from Parkinsons/Leweybody/ etc in 2014).
My favorite verses "God is our Refuge and our strength. An EVER PRESENT help in trouble" Psalm 46:9, and "Lord I believe. Help my UNBELIEF" Mark 9:24 - for those times that are so hard that we doubt.

Becki

A.B.S.O.L.U.T.E.L.Y. Will write her down on my Prayer list. All of you. Will also be sending you a PM on your FB because I would like to send something that has helped me (Dad died from Parkinsons/Leweybody/ etc in 2014).
My favorite verses "God is our Refuge and our strength. An EVER PRESENT help in trouble" Psalm 46:9, and "Lord I believe. Help my UNBELIEF" Mark 9:24 - for those times that are so hard that we doubt.

Becki

A.B.S.O.L.U.T.E.L.Y. Will write her down on my Prayer list. All of you. Will also be sending you a PM on your FB because I would like to send something that has helped me (Dad died from Parkinsons/Leweybody/ etc in 2014).
My favorite verses "God is our Refuge and our strength. An EVER PRESENT help in trouble" Psalm 46:9, and "Lord I believe. Help my UNBELIEF" Mark 9:24 - for those times that are so hard that we doubt.

JENNIFER L CRAWFORD

My dad was diagnosed with Parkinson's 2 years ago Thanksgiving time, and my mom's dad had it 20 years ago, so I'm scared to death that I've got it coming to me from both sides genes-wise. Having watched my grandpa go thru it I'm sooooooo terribly sad to watch as the same things start to happen to my dad (who is only 65). He's responded well to various medications and actually improved a little once he finally retired in May of last year. I just keep hanging on to the hope that medicine has to have come so much further than when my grandpa had it and hope that my dad (and your mom) have lots of well functioning years ahead of them thanks to everything the Michael J Fox Foundations has helped with. Big hugs to you and your mom!!

sheilah

Smart kid.

SarahB

Of course I will pray for your mom--and whole family.

Stacy

So sorry. March is a real drag around these parts, too. I hope your sister makes a full recovery, and that your mom finds a treatment that actually helps more than it hinders. Amen, Noah, amen.

Angela

Hugs to you and your family. And Noah, you have the right idea. I actually had thought about trying to give up worrying for Lent this year. But then I started worrying about it and gave up.

Tari

I'm so sorry to hear your family is once again being followed by the medical boogie man. I will gladly send up prayers for all of you.

Noah totally has the right idea. It's something I've been working on with various degrees of success.

Chi

Oh, Amy. Big hugs. <3

Christina

Aw shit. I don't *know* you, but I wish I could just bring you a beach vacation, food for the month in the freezer, and healing for all your family. Instead I'll say a little prayer and send a virtual hug.

Lori

All the love and good wishes and warm feelings to you and yours.

Lindsay

Ugh. My dad has Parkinsons and it is THE WORST. His is complicated by also being seriously overweight, making everything just worse in general. The balancing of meds and side effects (I'm just now learning how to not freak out about his hallucinations) seems to take months and months, only to have to redo the whole process as the disease has progressed again. I'm so so very sorry to hear this has hit your family too. Swimming helped my dad for quite a while (though his is too bad now and being in a pool is no longer safe for him) and is a fabulous addition to medical treatment, just in case your mother is looking for unsolicited advice. Wishing you the best!

Sarah

All the very best to your mom and sister and of course you and the whole family.

Springsteenfan

Dearest Amy, so sorry. It all sucks, but you are loved by us here strangers.
Sending out big prayers, Unitarian vibes, healing thoughts and virtual cocktails or 7 to you and yours.

Denise

With you. My dad was diagnosed with Parkinson's 7 years ago. It progressed very slowly at first, but now we've hit the skids. He's also diabetic, which has caused renal failure, which is the primary culprit in his health problems, but in the past 3 months my brother and I have noticed signs of dementia. That part seemed to have come out of nowhere... or maybe we just didn't see because we didn't want to see. I was just telling some friends last night that I feel guilty because I've had plenty of time to prepare for this, but now that the really hard stuff is upon us, I find myself emotionally unprepared to care for my father as if he were a child.

I wish I had some words of advice or encouragement, but I don't. I'm in a rough patch myself with all of this. I'm also a Christian, but it doesn't change the fact that this just sucks out loud on so many levels. I will remember your mom, you, and your family as I pray for my own. And, for what it's worth, I'm with you.

Chris

I'm so sorry Amy. I am a super long-time reader and frequently LOL at your posts. You're always my first read of the day. That said, it's more than ok to write about the shitty stuff too. You've encouraged us and brightened our days for many years and I know we're all happy to support you. I have found so much encouragement from you as a mom of two boys. Thanks for sharing with us and I'll be thinking all the best for your mom and family. You are not alone.

Donna Stamey

My Dad has Parkinson's. He started having some tremors in one hand in his 70's, but his (former) primary care doc pretty much blew it off. He wasn't actually diagnosed until a few years ago (at 80ish). His main complaints have been feeling tired and weakness. He has been able to continue to play golf through last fall, although I don't know if he will be able to do that this year since his legs are weaker and he can't stand/walk for very long. I think it is something she can manage and live with. It's definitely not the end of the world. Obviously, seeing the right doctor is really important, along with making sure whatever medication she takes works for her and is at the correct dose. My parents go to a Parkinson's exercise group once a week, and I think it has been very helpful in terms of the support. Anyway, I'm sorry that you and your family are going through all this right now. Wishing you all the best.

cris

Prayers, and virtual hugs.

Joanna Moore

Thinking of you all!

stephanie

Buddhist here. It would my honor to hold her in my prayers today. For you as well.

If I may be brazen for a moment...you are so much stronger than you think are. Breath, take moments to be still and don't forget to marvel at the ferocity of life.

ccr in MA

I'm so sorry for both these things, and hope that things stabilize soon. Never hesitate to write about what you need to write, though of course I can understand not wanting to write about it and make it that much more real. Hang in there. Words of wisdom, Noah, but so hard to practice.

Sue W

Your family, including your mom and sister will be in my thoughts.
I think you should keep Noah around for his uplifting resolutions! Something a lot of us need to follow.
Hugs to you and yours, (((((Amy)))))

Jen

So sorry. I hate Unpleasantness and there has been SO MUCH of it lately. Sending hugs your way.

Jelourai

So much love to you, and to your mom. I'm thinking good thoughts for her, and your family.

Lizardek

Awful stuff to have to deal with and the whole political situation underneath making things even more stressful. Huge amounts of strength to you all.

Lisa

So glad to hear your sister's surgery went well and she is OK.

So sorry to hear about your mom.

I do love your voice.

julie

Holding your family in my hippie Unitarian prayers. A virtual hug from this virtual stranger.

Carin

I'm so sorry. I can relate to the pain you feel now with your mother. My mom has ALS, she's 3 years in. Neurological diseases are the worst. I hope your mom finds treatment that works well for her and you all find peace with the new reality. I think I've learned to stop and enjoy my life, because I know how fragile it really is. It's unfortunate though, I wish I didn't have to learn that lesson due to a sick mom.

flybigd

My brother has had brain surgery three (!) times for trigeminal neuralgia. Last time he spent a week at the hospital 5 hours from home. He is far into the depths of experimental treatments at this point. I am praying for your sister and for him for a full recovery and better quality of life. Prayers for your mom too, Parkinsons sucks.

Karen

I always want to write you comments but I never quite know what to say and I often don't say anything. I can't do that right now because I need you and I feel like you need us too. So I will say thank you for the reality check, the reminder of the things that matter. Thank you for putting yourself out there publicly so those of us who go through things privately know that someone else knows what it's like. Someone else with much better writing skills who can put words to the things we feel. I've never met you but after so many years you feel like one of my best friends, so thank you.

Terrsa

Prayers and love for your sweet son for that note.

Wendy

Sending much <3 and big virtual hugs to you all.

Alison

I'm so very sorry Amy. I wish I had something better to send than thoughts and prayers (to you and so many others) but I'm at a loss. I hope things are better for you soon. Rock on Noah.

Solmaz

Hugs for you. Sending a pic of Noah's note to my printer! We all need the reminder.

Joanna

Ug. I'm so sorry. 2017 can go jump in a lake.

liz

Thinking of all of you, and hoping for the best outcomes possible.

In my family we have had Parkinson's galore. My dad's step-father, his (my dad's) oldest brother, his youngest brother's wife, and his step-sister's husband all had it. None of them ever lived with the others, all were of Ashkenazi Jewish ancestry.

Lauren

Whewwwwww. That is a lot happening in one family!!! Damn. Please send my love and gentle hugs to both your mom and your sister! So scary. I wish I lived close to you so I could drive some cookies over. Don't forget to take care of yourself in all this. Hugs to YOU.

Brianna

I'm sorry you're going through all of this. I just hope for some moments of peace for you. Thank you for all you do here and we all send our love. Hugs.

jm

Sending you all wishes comfort and peace.

Jen

Noah is a very smart kid.

Praying for you and your family

Nancy

I always feel weird to say I'll pray for someone since I don't pray but I will keep your mom and you and your family in my thoughts which I think is pretty much the same thing (for me anyway).

Nancy

Also, Noah for president!

SparkleP

Oh Amy I'm so sorry. That's a lot of shit to pile on top off the my country's going to hell in a hand basket shit.

I made a donation to the Michael J. Fox foundation for your mom. Please tell her we are thinking of her and wishing her the best!

sbc

Saw this and thought of Noah...http://www.dar.org/national-society/events/family-event-colonial-career-day

It's the same day as the Cherry Blossom kite festival, so DC should be fun (and crowded) that day!

ERM

Long time reader. So sorry. I lost my dad in April of 2015 from cancer and at the time I reread some of your posts about losing your own father. They helped me. I took a picture of him b/c your post reminded me I should have no shame in remembering the time. I also had a new/different appreciation of how hard that time must have been for you. The ages of our kids have such an impact on our own experience of the illness and death of a parent. Having a child that is articulate enough to express things we are feeling is a blessing but also amplifies our own pain.

I am sorry to hear you are going through this with your mom. I have no idea what your relationship with your sister is, but even if you wanted to, you can't talk to her about how sad you are about your mom b/c she is clearly dealing with her own sh*t. I hope your sister recovers from this and goes on to live a beautiful healthy life.

Good luck making it through the next few months. My best to your mom, sister and the rest of the family helping everyone else make it through this hard time.

Lynn

Oh, man. I'm so sorry to hear this. Wishing good (or at least reasonably better) health for your sister and mom.

Amy

I am the praying sort and will keep your mom and your whole family in my prayers, especially during this difficult time. All the internet hugs.

B

Prayers for your mom, your sister, Noah, and you. As I've been dealing with the illness and mortality of my parents, I randomly thought of you and your dad just recently, and the beautiful blogs you wrote around that time. And in particular,, I wondered how your mom was and said a quick prayer for her. It's strange to me now. That a stranger to me, whose blog I occasionally read, happened to pop into my mind - evidently when your family needed a prayer.

Elf

I'm so sorry. I'm an atheist, so no prayers, but I sincerely hope that the interactions between random events and human agency work out in your favor, and will take any actions in my power to make that so.

My grandfather died of Parkinson's, and it sucks. There can also be notable differences between the presentation of early and late-onset cases, so if you mother is 70+ you might want to look into that, particularly given that not all doctors seem to treat it particularly differently. My grandfather's physical symptoms, while horrible, were very much secondary to the cognitive effects of the disease.

Stephanie

Amy, please let your mom know that I and so many others are keeping her in our prayers. I am a Christian too and I fully believe that God can heal if that is His will to do it. But sometimes things happen that teach us something, make us grow and/or help others. It rarely makes sense to us while we're going through it. I'm sure that your mom is awesome because we already know she and your dad raised a great kid :) I pray for her healing but also that someone else can be touched/blessed/benefitted by her awesomeness and strength through all of this. Big hugs!!
PS, I pray for you too sometimes, even though I know you don't believe :) I pray that one day you will.

Mina

So sorry to hear this, Amy. My mum is in a care home, and my dad and grandma have got dementia and need to be in a care home as well. It's tough. It's unfair, to us, to them, to the children.
Noah is such an intuitive child.
Hang on, and this too shall pass. This is what I tell myself, and what I tell everyone who goes through a rough patch. It is the only piece of wisdom I am sure of in this life so far, nothing lasts forever.

Tiffany L.

Been reading your beautiful blog for years but have never commented. My father was diagnosed this Christmas with Parkinson's and Alzheimer's. Ever since its been a blur, a fog, a haze...can't seem to wrap my mind around it. As of now the Parkinson's seems to be slow moving but the Alzheimer's not so much. Sending you lots of love. And your sons resolution is perfect...hard to do, but perfect.

Amy A

I'm sending up good wishes and prayers for help and healing.

Christine

Sending love and good thoughts.

Lindsay

Love, prayers, positive vibes, hugs, and a dose of luck your way <3

kelly

You and your family will be in my thoughts, Amy. I hope your sister recovers smoothly and your mom finds relief.

May we all be as wise as Noah.

brittany

Sent thoughts and prayers today at church- just keep swimming....

Betsy

My dad just hopped (well, shuffled really) onto the Parkinson's train. Well, we think that's what it is but are waiting on some test results to be sure it's not something else, like Lewy Body Dementia (ugh). I'm sorry you and your mom are going through it as well. It's been a VERY sudden loss of independence for him, which is hard on him and perhaps more so on my mom, who is 10 years younger and his caregiver. I hope your mom is able to figure out accommodations so she can live like she wants to for a long time. The whole thing is very confusing and overwhelming to me, as I'm sure it is for you as well.

Lisa

Hi Amy - long time reader. I'm really sorry to hear about your Mom's diagnosis. My dad was diagnosed with Parkinson's when I was eight (I'm 38 now) so I've lived with this disease for over 30 years. I really don't remember my dad without it to be honest. Back then, he was only 33 and they didn't know much about early onset Parkinson's but given his age, he was able to get some new (at the time) and experimental treatments which was lucky. Getting medications balanced is the hardest part. Actually, medication side-effects are also hard. Actually, it's all hard. My best advice is to plan and talk to your mom about all her wishes. Does she want to live at home? Assuming it's a possibility, will any renovations be needed (we enlarged all doorways to allow a walker/wheelchair and reno'ed the bathroom to enlarge and got a roll-in shower, plus bars beside toilets, etc). What type of care does she want (and can afford)? Also, as much physio and exercise as she can do. Parkinson's is a "use it or lose it" disease, so get her moving as much as you can. My mom and dad sing folk music to get his voice started in the morning and to practice his speech. It's all very much to take in. I wish you and your mom and family strength on this journey. Take care of yourself.

Wedge

So many hugs for you.

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