Skip navigation

I’m heading back to Lafayette, La, for my next appointment with my neurosurgeon. She’s the best in the state (far better than the local doctor with which I’ve dealt.) I call him Dr. NO as in, “There’s no way I’ll see him again. I’ve come up with other terms of endearment for him, but cannot say them here.
My current doctor has an eye for details and a blunt but truthful way of explaining things.
Two words that scare the $@#% out of me are, “permanent disability,” which she drove home repeatedly during last month’s visit.
She doesn’t pull any punches. That’s one of the things I like about her. (Still doesn’t mean I like having a permanent disability.
I still hold on to hope, but only because of the support and loving encouragement I get from my dear friends and family.
I’m not going to name them, but if you’re reading this, you’re likely one of the few about which I’m talking. So, thank you. I love you.. More than you know. You see past my Feeling Twisty days and treat me as if I’m not tripping over my pretzelish-shaped body.
Today’s visit will include looking over images from my MRIs, specifically, the basal ganglia region.
I’ve tried reading the images, but can’t tell much from them. I do like this image, though,

20140419-040559.jpg
I think I look like a species that The DOCTOR might come across during his travels through time and space.
I’ll keep you posted on what’s up next for me.
Again, thank you for your thoughts, prayers, and words of encouragement.
As I deal with dystonia and it’s alleged permanency, my thoughts and prayers are going to my Uncle Red and the whole Francis family. He has Parkinson’s Disease and is very near passing. I love you Uncle Red and your children.
So, to summarize: dystonia sucks, permanent disabilities suck, Parkinson’s Disease sucks, and saying goodbye to loved ones sucks.
But for the support I continually receive I would say my life sucks.

Peace,
Mike
P.S. Please excuse any rambling and misspelled words. I’m exhausted and I’m not wearing my glasses.

I’m participating in a mud/obstacle run (limp/walk) this morning. I’m nervous! I haven’t done anything like this since the dystonia symptoms started appearing a few years ago.
ReALLIEty Challenge

20140405-133859.jpg

20140405-140746.jpg

feelingtwisty:

I know breathing exercises help. I need to be more consistent with mine. Great post with equally great videos.

Originally posted on Cure for Dystonia:

Breathing exercises can be effective in reducing anxiety. When the muscle spasms and tension were severe I found breathing exercises very helpful. Here are some videos that may help you:

Try deep breath exercises with some relaxation music in the background:

View original

feelingtwisty:

Asking for help is a tough one for me.

Originally posted on Of Storms and Peace:

After all this time asking for help doesn’t get any easier. Especially after getting a little taste of independence and freedom.

Due to sickness and injury amongst those who are on my care schedule and the fact that I was doing a little better I have had a few days where I was on my own. Help was only a phone call away, but I did it on my own and as usual I liked it. It felt good to be standing on my own two feet without help, literally and figuratively.

As I woke up this morning however, I instantly knew this was not going to be a good day. My body was already rebelling. If it were me, alone, maybe I could still try to manage on my own, but I have the children to think about, and so, reluctantly I texted my sister saying I needed someone…

View original 182 more words

feelingtwisty:

Always great to read positive posts!

Originally posted on dystonia and me:

Yesterday I attended the Hertfordshire Dystonia Group meeting. I cannot even begin to describe the joy it brought me. Finally meeting other sufferers face to face and hearing individuals describe their journeys to me and the different ways they manage their conditions was a very comforting and freeing experience.

A speaker, who has Generalised Dystonia, had been arranged and I must say Suzie was absolutely inspirational to listen to. At 16 she had won a scholarship to train as a ballet dancer at the London Studio Centre, unfortunately three terms in she started suffering with Dystonia, that has gradually progressed. However she is such a positive, determined, talented woman and has not let Dystonia stop her in the slightest. She now created ActOne ArtsBase which is a platform for young people and adults with and without disabilities to explore dance. The work she is doing really is amazing. For anyone…

View original 203 more words

I’m sitting in a hospital room as my mom sleeps. She was admitted earlier complaining of chest pains. Fortunately, the EKG results show she didn’t have a heart attack. That’s all we know right now. I’m glad I get to be here with her. As she often says, “We’re making memories.” I’m grateful for this time to spend with her.
My dad is out of town but will be back soon. He loves mom so much. I know it must be driving him crazy not being here yet. I love you Dad and Mom!

Peace

I had my first visit with my new doctor today. This is the first time I’ve left a visit feeling more hopeful than I ever have after a doctor’s appointment. I’ve been to specialists in Houston and New Orleans. I didn’t expect to find such a caring neurosurgeon in Lafayette.
#dystonia #movementdisorder

I haven’t written in a while. I haven’t wanted to because I haven’t been in the mood to say anything about dystonia. Today, I want to write, but I’m not going to mention dystonia. Well, not again.

Today I want to focus on gratitude. I stepped out of the riptide of my life and got a glimpse at it from the outside. I saw so many wonderful things for which I am grateful, but I’m focusing on a few specific ones today:

Watching two of my sons play soccer and football this morning.

20131006-031455.jpg

Visiting with my family, including my parents, my Uncle Louis, Aunt Ruthy, a couple cousins, and my 83 year old Aunt Betty. I had my camera but forgot to take a group photo that I had planned to.

Seeing my oldest son, Chandler, becoming a responsible yet fun loving man.

20131006-032102.jpg

Watching my daughter chilling out with my friends’ cat while we watched LSU football.

20131006-032207.jpg

And finally:
Reconnecting with friends from the past. Even though decades have gone by, they still mean so much to me. I doubt they realize how special they are to me. Their joyful spirits inspire me. Maybe they will catch on when they read this. 😊

So, to all of you in my life, LOVE & THANKS.

Peace,
Mike

By the way, here are couple post-mirror-tumble photos.

20130906-011425.jpg

20130906-011446.jpg

20130906-010216.jpg

I’ve been doing a lot of looking back at my life lately. Face planting against a tree and falling into a mirrored closet door will make you want to think about chances missed and regrets over decisions made in haste. The photo is my older brother and sister, my lil’ sister, and me. I love each one of them so much, but I’ve spent a good part of my life being rude and obnoxious to them. In spite of my coarse behavior, they still love me.
Dee Dee, Ronnie, Alisa, I love you. Thank you for never giving up on me.

Follow

Get every new post delivered to your Inbox.

Join 1,916 other followers

%d bloggers like this: