Wednesday, September 17, 2014

New Release~Stroke After Stroke: A Rower's Pilgrimage by Barbara Polan

One of our stroke tribe has written a new book! Stand up an take a bow Barbara (Barb) Polan. Welcome to to world of publishing, Barb. You're in good company. Can you tell that I'm excited for her?

  • Title: Stroke After Stroke: a rower's pilgrimage
  • File Size: 5062 KB
  • Print Length: 131 pages
  • Sold by: Amazon Digital Services, Inc.
  • Language: English
  • ASIN: B00NDF3BH8
  • Price: $4.99
Available in Kindle version
Paperback coming soon
Amazon Description
Stroke After Stroke is the personal story of a recreational gig rower who survived a stroke at age 52, and of her relentless pursuit of recovering from the resulting hemiparesis (the loss of the use of her left side) even 5 years later, despite the medical establishment's stance that recovery for her has already ended.
Based on the blog she started 6 weeks post-stroke, the book chronicles how Barbara Polan has faced the losses concomitant with her injury, and the struggles of incorporating current recovery therapies into her attempts to resume her pre-stroke life. In the process, she re-shapes her new life into one that better suits her.

She has written the book she had hoped to read immediately after having a stroke.

Barbara has first-hand experience with the relentless repetition needed to establish new neural pathways that are needed to regain lost functions, and promotes investigation and optimism as necessary ingredients in any recovery. In addition, she offers helpful information and insight into the logistics and the emotional reality of survivors' altered lives, along with helping survivors understand that they are not alone.

This book will be appreciated by anyone whose life has been affected by stroke - survivors and their caregivers, family members and friends. 

This is her first published book. Let's wish her well and much success. Run. Don't walk and grab your copy today. She's already got 1 Five star review on this masterpiece.

Contact info to find out about Barb:

Monday, September 15, 2014

Tales of Therapy~ What Are They Teaching Therapists in School???

As I have said before, I have a brand new OT. She only graduated August of 2013.

We were chatting while she was stretching out my fingers. It felt good to have them stretched out, but of so painful getting there. So I asked her the odds of getting my wrist and fingers to behave again.

She started out with that line we (stroke survivors) hate...every stroke is different. I do have a bit of a contracture of the tendons in my ring and middle ring at the large, middle knuckle. I almost snatched my hand away and strike her severely about the head and shoulder. Nah, I wouldn't hurt a fly unless it was aggravating me.

She started spouting out all the book knowledge she had absorbed about neurological and stroke rehab. I listened intently because I was curious and I wasn't going anywhere for at least another forty-five minutes. It was adult conversation other than talk about the dying process I get at home. Something I sorely lack and am hungry for plus it was about me in a round about way.

In a way it was helping me speech therapy wise without being in speech. We were conversing back and forth. I had to process data which was almost foreign to me having never studied anything but basic range of motion in school. When I didn't understand something, she broke it down to where I could.

In talking about stroke patients she mentioned that she had been taught that there was a two-year window for recovery. That after that period of time no new recovery takes place.
What?! Yeah, I was seeing red too.
I asked her what I was doing in therapy with her then because I'm past the two-year deadline.

She looked at me and realized what she had said. She hemmed hawed around and said, "But since, I've seen some pretty miraculous movement improvement in survivors in over two years post stroke."

"So why did they teach you that in school?" I asked.

"Probably because they needed a guideline, but they are wrong."

"Yeah, they are. Have they never hears of neuroplasticity? Have they never seen a survivor go past the two-year mark? There are tons of reports and studies that dispels that number." I laid my hand down on the towel. The fingers in a relaxed curl rather than a clenched fist even though I was upset.

"So I've heard from other patients."

"If I ever hear you say that to another stroke survivor, I'm going to paddle your butt. You are the authority they look to for hope and straight answers. It would be so easy for a survivor to give up trying for recovery. They need encouragement whether their stroke was yesterday or fifteen years past. You don't want to be the cause of someone giving up, do you?"

She nodded. "I can be encouraging."

"I know you will be. You're just new to all of this and you haven't gained enough experience, but it will come." I reached over and patted her on the shoulder. "Just remember, this grandma with a paddle waiting."

She helped me up from the work table. Across the room, I saw the man I had a run in with about men folk coming here to work not rubbed on. I nodded in his direction.

My OT chuckled, "After last time, she decided to work on him away from everyone else. He didn't learn his lesson and still running off at the mouth."

I shook my head and said a silent prayer of forgiveness for him. "Some people will never learn. Good, ol', southern boys are the worst at learning."

She cocked her head sideways at the Nu-Step machine, "Southern gals too."

"Yeah, I'm a transplant. In Georgia by choice. There are quite a few times when I'm delighted to say that."

"Me too! An hour earlier on Friday?"

"I'll be here with bells on. You make me hurt so good." I said with a laugh.

She walked me out of the therapy room. At the door, instead of walking through and holding the door for me, she pushed it from inside. "My next patient is here and I don't want her to see me. She's a good, ol' gal."

As I passed the seating area, I saw her. Hair fizzed and sprayed to the high heavens. I could just see the rebel flag tattoo on her arm under her rolled up, grungy t-shirt sleeve over cut-off jeans shorts. Enough make-up to put Tammy Faye Baker to shame. Her crass voice carried across the waiting room. Yes, no doubt about who the patient was.

I continued walking out the sliding doors and took a deep breath on non-White Shoulders perfumed air. The woman must have used half a bottle of the stuff.

Big C Bloghop ~The Boob Job

So I signed up for another anthology type blog hop. This one is about cancer and proceeds will help pay for another writer's cancer treatments. Yes, it's a worthy cause. Having battled the beast four times already and won, AND as a caregiver for a terminally ill, cancer ridden husband, now with hospice service, I know how expensive this is. After all, we've spent over a million dollars, out of pocket expense, on my husband's ten-year battle.

After facing this reality, how can I come up with something inspiring and uplifting to say about the Big C? You know I can. I usually do with this blog. The reason for the delay in posting is that there were/are too many stories to tell and weeding it down to one.

The Boob Job

Nothing strikes at a female's femininity more than breast cancer. Even a passing thought of this particular cancer strikes questions like future sex appeal, future partner relationship impacts, and even clothing options.

Now I have always had large breasts on a petite frame. My twins always greeted you before I did. I was an EE after five children on a size 2 frame. You can see it right? I opted for a breast reduction because of back problems and was very happy with my size C breasts until 1998. Think 10 pounds each side removed. Granted at over 50, gravity was doing it's natural thing. Hey, even at over 50, I ain't dead yet.

I found a lump during a shower. Now I've always had fibroids so it would have been so easy to pass it off as another one, But this one felt different. Having battled cancer twice already I checked in with my family physician. He ordered a mammogram. Sure enough, it came back questionable. Always, always listen to that tiny voice in your head.

I was scheduled for surgery the next week. A long few days of agonizing discussions ensured. I decided if it was cancer to let the doctor remove all that he could find while I was in surgery.I would deal with the aftermath later. The idea of waking up after anesthesia, being told it was cancer, and having another surgery scheduled was too much. I wanted it out and done. A brave move? Not hardly. To me, it was a chicken poop way of not facing my fears until it was over or at least this part. Radiation and chemo would follow but I'd deal with that later. One crisis at a time.

I awoke with both breast gone, as well as some lymph nodes under my right arm. How did I know this? The pain upon movement. The amount of packing and bandages gives you the impression that you still have squashed boobs after surgery if you look at just the bandages.

The realization that lymph nodes had been removed rang alarm klaxons in my head. This wasn't over. There was spread. So I began repeating my mantra in my head.
I'm too mean to die.
 I'm too stubborn to give up.
 I'm a fighter.
 I'm in God's hands.
I repeated it several hundred times before the surgeon came to give me the bad news. He couldn't believe my peacefulness upon receiving the news. He must of thought I was in shock because he repeated himself and shot a concerned look to my husband. But I told me that I understood everything he had said. The battle was just beginning.

My old oncologist came in. I'd given him a heads up prior to my surgery. We discussed options. I opted to go straight to chemo since the lymph nodes were involved. Let's fool the cancer that I'm dying so it will stop and die too. That's what chemo basically is. It kills the cancer cells, as well as healthy ones. This sounds like bravado, and in retrospect it was in part.

I knew I would lose my hair once again. I pulled out my silk scarves from a ziplock bag stuffed in my underwear drawer. There is nothing more girlie than donning pure silk on bare flesh. Just the thought gave me tingles of pleasure. Yes, I'd forgo the wigs once again.  I placed my large, gold hoop earrings on the dresser. Black eyeliner pencil to emphasize my eyes instead of a sick body. Gypsy fortune teller mode. I'd asked for the prescriptions for Phenagren and Immodium from my oncologist beforehand and they now sat at my bedside. I knew how the chemo would affect my body. Been there. Done that. Didn't want to be here again. But I was.

I'd grabbed a paperback and stuffed it in my purse. I was girded in my armor with my mantra on the tip of my tongue. Let the infusions of poisons begin. I was Don Quixote off to battle the beast, or King Richard the Lion Heart taking on Saladin in Jerusalem. My purse transformed into flail with sharp spikes and sturdy chain. I was ready for battling the beast. I would be victorious once again. Of this, I had no doubt because...
I'm too mean to die.
Too stubborn to give up.
I'm a fighter.
I'm in God's hands.

Sunday, September 14, 2014

Sunday Stroke Survival ~Anosognosia is it me?

When the subject of anaosognosia came up in the data base I wondered

What is it?
And after reading about wondering if it was me?
It sure sounds a lot like me in a lot of ways.

You know me. If I don't recognize something, I have to look it up. Blame it on my parents who made me look up words I didn't know or just inquisitive minds want to know.

1. Ignorance of the presence of disease, specifically of paralysis. Most often seen in patients with nondominant parietal lobe lesions, who deny presence of hemiparesis. The information shown above for anosognosia is provided by Stedman's.

It's basically denial of your current illness. A hear, see or speak no evil type of existence. I'll admit most of the time, I'm in this thought mode.

Maybe, it's just my stubbornness. "I can do everything, but I just have to figure out how." So I really don't have this because I KNOW I have hemiparesis (paralysis of half the body or half paralysis). But it's not on my mind dwelling and stewing up front and always present. Mainly because I have figured out how to do most things I want to do already.

But there are a few things I miss the boat on...
  • Clapping,
  • Spinning wool (still muddling this over)
  • Catch a football without pinning it to my body first
  • Playing cards without a rack,
  • A regular handshake because my right am is affected
  • Anything that requires two hands to accomplish where I don't have to use my mouth, teeth, lips, or elbows to substitute. There's probably a zillion things I missed on this list.
I guess I don't have it after all.  But the idea is attractive to me. If I didn't accept or know my right side was paralyzed, I wouldn't miss it or would I? But it could also be very dangerous also. Trying to walk without my AFO will land me right on my face on the floor. I know because I try it ever so often. While I have things in easy grasp to prevent my falling.

But if I was bedridden, I could see it happening. I could easily forget about the paralysis. If I had full time, around the clock caregivers who did everything for me, I could see this happening too, but that is not the case in my life. I am the doer of everything that needs to be done.

I've always LOVED this poster!
My tagline at the end of each one of these posts, "Nothing is impossible with determination" is a nod to my disability but overcoming it. It's not denial because it slaps me in the face several times during each and every day.  There is nothing more important than believing nothing is impossible even if you cannot do it yet.

Am I just dreaming? Is anything really possible for someone with my disabilities?
Possibly but nothing ventured, nothing gained. I've always had to fight for accomplishments. Nothing has ever come easily and if it did I didn't appreciate it. I am known for having my head in the clouds while having my feet on the ground. I'll stop short of lying, cheating, and stealing to achieve what I want.

I believe in human potential, but first there is getting past the denial phase although it's a comfortable spot. Denial is la-la-land. Unfortunately, you cannot live there for long without a serious mental illness.

Nothing is impossible with determination.

Friday, September 12, 2014

Life and Exercising after a Stroke Part 2

Wednesday came and went with a flurry of emails with Susan and Darren of Stroke Class with Susan, but as usual with my Wednesdays, I was MIA for the live class. Hump Day for me means I'm humping it all over the place. Yes, I realize it's now Friday.

No nurse or aide from hospice comes which is a blessing and a curse. My husband's care is all up to me, but I can run around the house in my panties if I want to. He's not too demanding. It's just a fact of my life. But this particular Wednesday, I had OT, an appointment with my brace maker (more on this in a moment), a stroke group meeting, and my regular knitting/spinning group meeting. All this, and the first live stroke Class with Susan too. Something had to give. It wold take my energy supply for three days to do all of it.

Luckily/unluckily the brace maker's office gal called and said that my brace wouldn't be ready until the 18th. Good because it lightened my schedule. Bad because I have to keep hobbling around in my ill fitting, inadequate AFO for a week longer. Another week of walking only when absolutely necessary to prevent my foot ulcer from getting worse and splitting open again. You have no idea how frustrating this is when it's up to you to do it all.  But looking at it this way, I've spent almost a year fighting the insurance company for approval - a week is nothing. Yeah, that sounds better.

I went to OT and my therapist discussed reducing my time from three times a week to two. Eliminating Wednesday sessions, would I mind? Wohooo! Another Wednesday mayhem item gone. The reduced time is not because I don't need it, but because of session limits with my insurance.

I made the stroke group meeting but skipped out on knitting/spinning group. I just didn't have the strength or an ounce of energy to spare.

So when did I have time to exercise with Susan? Thursday afternoon. It was rainy and too humid to be outside. Think about being in a sauna wrapped in a wet quilt and you get a pretty good idea of what it was like outside, but my plants loved it. I clicked on the link and watched the video all the way through and then did it with her. I loved the option to stop the video to catch up or take a break when I needed to. One thing I'm going to have to do is get a regular speaker for my computer. Exercises and headphones do not play well together.

While doing the workout with Susan, I found out just how out of shape I am. I was totally pitiful and it's not a high powered workout either. I found after the thirty minute mark, I was pausing the video more often. It's actually made fun with music playing in the background just like a regular exercise class. It made me feel semi normal. Great job Susan, Darren, and Luc!

I would suggest a shorter microphone to reduce Susan's breathing noises. One that came to her cheek instead of the one that looked like it could wrap halfway around her face. It's an old DJ trick. Did you know I was once a radio DJ? I was the overnight voice of a Virginia station while I attended nursing school. Now I can't talk worth a hoot, but I still have my FCC broadcasting license...just in case. Boy, the things we keep.

While there were some things I could not do, I did the best I could. Remember I have very limited extension of my elbow, and nothing in the wrist and fingers. To place my affected fingers so they'll hold my kneecap meant first stretching them out  to hold my knee. This is where I was really glad for the stop/start button. Exercising without my AFO was interesting especially when my Clonus kicked in at a couple points with the ankle movements...another stop/start button thing.

This morning the tell tale signs of "working out" were present. Muscles not used in a while were still exhausted, but then I'm not your normal stroke survivor either with dosing my husband with morphine every two hours around the clock. Not enough time sleeping to repair stretched muscles, but like I said it's me and my lifestyle. Then again, I can see difficulties ahead when my Botox wears off and the spasticity begins again. But those are problems for another day.

I do plan on continuing with the class during the trial. I would love to have a DVD of the class to play it in a larger room than my office. Or if it were downloadable would be even better. I can see great benefit to these classes if nothing less than getting this old lady off her duff and making round a less desirable shape.

So how can you join in the fun?

Read all about it on their website:
They are on Facebook too at:
Maybe Luc (the internet savvy one of the trio) can start up on twitter and Instagram soon hint,hint.
Next live workout is September 17, 2014.

Sounds like an infomercial doesn't it?Not really. I just want to pass on a good thing by some great people trying to help us. I receive nothing from this except a good work out with high hopes of improving me for me.

Nothing is impossible with determination.