Sunday, September 28, 2014

Sunday Stroke Survival ~ Yes, You Can Be a Television Star Too!

You: "Huh? What? I'm nobody. How can I be a star?"
Me: "With telemedicine, my dear."
You: "What's that?"

It's a thing out of old, science fiction novels or World Expos. The wave of the future but in our time. It's now the new buzz in medicine. A way of seeing a specialist in another town or even state to get appropriate treatments and diagnoses all via a television screen. Actually, it's more like a computer monitor. But hey, look at all those YouTube stars. Some have even gone on to real movies and star in their own movies, right?

I first saw the commercial for this system about two years ago. Where I live, there are a ton of blink-your-eyes-and-you've-missed-them towns. They are serviced by clinics from various hospitals and doc-in-a-box type emergency centers. Just after my stroke of a woman in Waycross being diagnosed with a stroke, via this technology, by a Savannah (the nearest "metropolitan" town) physician. That's over 200 miles away.

Thanks to modern technology and the internet, which hear tell Al Gore invented. (guffaw) Even if you live in one of these small communities, you can get access to top notched medical care. Scans, physical observation of a patients, and test results all in real time. No more waiting to have them sent and waiting to get an opinion, waiting for the specialist to have an opening for a consult, or wasting valuable time. For a person suffering a stroke, every second is brain death and a longer recovery time.

Luckily for the woman mentioned above, there was a happy outcome. No permanent damage or disabling effects.

Can you imagine what this advent in modern technology could mean in the long run? In my earlier life, I was a life RN/Paramedic. I was the doctor's hands and eyes on the scene. Via a radio, I would describe the scene, mechanism of injury, and the patient's condition. Provided we weren't surrounded by hills and inclement weather, I was always able to reach a physician for more than the usual protocols. What I wouldn't have given for the doctor to see what I was seeing. Now, imagine if I had a satellite smart phone to send images as well as my description. It would be a chance in the race against death. No more second guessing myself after a patient died. It would have saved me a bunch of doubt over fifteen years, but back then, it was all we had.

Yes, you too can be the star of your own real life docu-drama. When seconds count, this technological advance is a godsend. Let this fifteen minutes of fame live on and expand. That's my two cents and with inflation, a quarter.

Nothing is impossible with determination.

Saturday, September 27, 2014

After a Stroke~ A blog and a rant

Kate Allatt had a great post today. It was about changing the focus of the National Stroke Association and mental illness in stroke survivor. I whole heartily agree with her.

Is it any wonder why Dean considers the National Stroke Association a joke. For the past two years since my stroke, I've subscribed to their newsletter. What do I find in my inbox? Pleas for money, participation in fund raisers, and a focus on stroke prevention, ie, F.A.S.T. As if stroke
survivors had abundant loose change floating about to donate.  Many stroke survivors are in the same boat I am. Our loose change goes towards NEEDS because recovery is first out of our pockets. Fund raisers and awareness campaigns are a great thing to do for nonstroke survivors. F.A.S.T is a half lustered approach for warning signs you may be having a stroke, but why give the stroke survivor a goodie bag full of advertising. Isn't that like putting the cart in front of the horse?

National Stroke Association put that money into where the money can do the most good for stroke survivors...research and recovery, even adaption techniques would be more useful.
After all, that's the only reason I and most survivors read your site. To date, I can count on one hand how many articles were geared for the stroke survivor. We didn't die from our stroke and trying to find normalcy. Help us. Be of use to us. Sure prevention is important, but surviving a stroke is just as important.

<stepping off that soapbox on to another>

Kate brings to light another point of why mental illness is so prevalent in stroke survivors. Actually, a couple of them. Robin Williams' recent death by suicide sheds new light on depression. He's just one of millions.

In my own experience, I see this happening in my own life. When I first came home after my stroke, my children were failing all over themselves to help their poor, old mom. Granted I couldn't do much. As time progressed, the visits/help became fewer and fewer. I might see the one daughter who lives the closest once a month. The others, every six months, if that.

Yes, as a momma, I make allowances and excuses for this behavior, but really? "Call me, if you need me." But when I do call only when I'm desperate, you are all busy in your own lives and be able to fit me into your schedule next week. I understand this is an intrusion into your life. That's why I waited until I'm desperate!

My daughter came in from AZ. When I asked her to clean (knowing it would be spotless after it was done) my kitchen after a six month's absence, I got, "I told you I wasn't going to do this again."

Forget about Mom had a stroke. Mom has had a seemingly endless pressure sore on her foot. Mom is using every spare ounce of energy she has caring for their stepfather. Forget about the money she was trying to raise on limited resources to help her. Forget Mom is your sounding board and supporter for life past and present. Just nope, "I ain't gonna do it" and didn't. In fact, I saw her only thirty minutes in each of her three visits that week. Closer to ten minutes after she spent time talking to my DH (darling hubby).

When I complained, which I don't do very often, to my oldest daughter who lives an hour away, about the lack of help I got, "Well, I put my life in a holding pattern for the first year after your stroke. When do I get a chance to have a life?"

I won't ask my grandchildren to do clean or do most of the things I can't when they come (few and far between) anymore because they leave a bigger mess than when they started. Once was enough for me to learn this. It took me two months to clean up that mess.

My hospice volunteer had life get in the way. So I hired a neighborhood young man to do the yard work. After a sob story, I paid him in advance for work to be completed. He is history. I haven't seen him for three weeks. Lesson learned and pocket emptied.

I get offers from neighbors and friends near and far to help...
"If I only lived closer." (Even if I know you really mean it)
"Just call."
"What can I do for you?"
"Oh, I don't have time for that right now. Maybe next week"
Frankly, I'm tired of asking for help and not getting it. I may be two years out from my stroke, but there is a long list of things that are just a physical impossibility to do, but I still try because I'm the only one I can depend on while others depend on me too.  Now I know everyone doesn't have the same attitude I do...if you see something needs to be done, then do it. I can't be the only one.

So if you are amazed by what I write I'm doing, in spite of personal risk, please understand I'm doing it because I have to. Don't be amazed. Somethings need to be done whether you can or not. But somethings just can't be done and permanently left undone unless I can find someone else to do it. Is it any wonder that the doctor increased my antidepressant (for Fibromyalgia) to combat signs of stress/depression. Nope, not in my mind.

Monday, September 22, 2014

Stroke Class with Susan ~ Late Again, Perpetually

One of these days I actually going to attend the live class. Now, for the third week in a row, I was absent. I did manage to squeeze the 45 minutes in yesterday.

But then again, that's the beauty of this type of class. It fits your schedule. Mine is terribly hectic. That's why I think this exercise class will be a lasting thing with me except it's not a free trial anymore. There is a monthly subscription rate of $19.95. My personal pledge to do the exercises twice a week has fallen by the wayside this week with my new AFO fittings, OT, hospice, my hubby's pneumonia, and assorted other things. It's a real shame too since it was the last one I could attend.

I just can't get my life back to the orderly world I once had. My master juggler status has been a long forgotten feat since my stroke. I thought being a mom of five, two careers, caregiver for three elderly parents, and being an author was tough. I had no idea what tough was. My earlier life was just a primer for today and I'm failing miserably. Well maybe not failing, but only succeeding with a lot fewer balls. In some ways, I'm supremely thankful not being able to work.

This would be a salad plate
Part of the problem with not attending the exercise class is my husband's new eating schedule. We now have our big meal around one-ish instead of around six. The reason I say one-ish is because the time will vary because of when the aide, nurses, and appointments happen. Stroke Class is at 1:30. It may be closer to three before I can set a meal before him. But he's eating better. He's actually gained two whole pounds in the past month since the change over and his calorie intake has gained a whopping 300 calories per day. Yeah, I keep track. He now weigh 97 pounds. Five out of eight grandchildren now weigh more than he does.

I'm still measuring food by the tablespoons for him. We also do a reverse weight loss thing for him. It takes twenty minutes for the stomach to register it's full. So he crams as much food into his stomach for that amount of time. Granted he feels stuffed to the eyeballs afterwards, but he's getting almost twice as much calorie intake.

Yes, I could make it easier on him and myself by buying Ensure, but have you seen the cost of these nutrition supplements? $7.99 for six cans and that's for the store brand. It's not covered by insurance or hospice. It's cheaper to cook for him and give him vitamins. But I do give him one supplement about 11 PM to take with his bedtime medicines. For him, it's got to be dark chocolate and ice cold. It may mean going to up to three stores to find it-maybe on sale for a buck cheaper for me, but he's worth it. It accounts for one-third of our monthly food budget. But he's got to have it. The dying process is full of hidden costs between dying and dead.

Meanwhile, I watch what I'm eating the same way. I'm hoping with my new AFO to start exercising on my machine again because I can stand without pain for longer than thirty minutes. You'd think with all the stuff I do I'd lose weight, but no. Unhappily, I haven't. Round is still the shape I'm in. Between combating fluids with 40 mg of Lasix and a poor eating schedule, I still weigh more than I should. But since the Stroke Class with Susan is out of my price range, but my machine is available to me that may not be my legacy.

Nothing is impossible with determination.

Sunday, September 21, 2014

Sunday Stroke Survival ~ Running After a Stroke

Confession time: I haven't ran in decades at least in the physical sense. Not since I had rods put in my back, a hip replacement, and knee replacement done. Is it any wonder?

After all those surgeries plus an Achilles tendon ankle repair, I did a rapid walk rather than running. Since my strokes I've graduated from snail speed to tortoise speed in two years. I'm doing grand.

People holding doors for me or needing me for something always tell me to take my time or in a parking lot with cars stopping for me. I respond back one of several comebacks...
  • "This is as fast as I can go."
  • " I'm at top speed."
  • " Whoosh! Did you feel the wind as I passed ya?"
  • "Patience is a virtue. Learn some." (When they roll their eyes or beep their horn)
  •  "I've givin' her all she's got, Captain!" (In my best Mr. Scott impression from Star Trek)
But that doesn't mean I don't run because I'm always running. The energizer bunny has
nothing on me. I keep going and going...well, you know the rest.

I am running around like a chicken with its head cut off most days.
I am running a household.
I am running errands night and day.
I am running to keep ahead of an everyday growing set of complications.
I am running towards a brighter future.
I am running in circles most days.
I am running NYC marathons each and every day although not in the physical sense, but mentally juggling items and tasks.
I am running ahead of the insanity of my life. Oh, wait! It's already caught me.
I am constantly denying the urge of running away.
I am running into walls (obstacles) at every turn.
Best of all! I am running my own funny farm. Gentlemen in white coats, please take me away.

So the next time someone say, "Oh look, she can't run anymore because of her stroke."
Yes, I am running!
I'll leave you with this...
Standard YouTube License

And remember...
Nothing is impossible with determination.

Friday, September 19, 2014

At Long Last ~ My New AFO

After fighting the insurance company for a year, I finally have a new brace.  Yesterday, I picked up my new AFO. It's smaller and lighter than my old one. There's also no more lip at the top that always caught on things giving me a rather yucky blood blisters and bruises. It keeps good control of my ankle and foot which wants to invert.

The down side is that I have to get adjust to it. Or actually having the ankle straight. I've been in the old, inadequate one for two years making do. It will take about a week to stretch the muscles and tendons to how they should be. It is different to walk in and I have to retrain myself in walking with it in the proper position. It seems I've forgotten how. The middle strap was added to provide more support because my foot still wanted to roll.

Next up, I go back to the brace maker to adjust my Achilles tendon support. I have managed to stretch it out some so the built up heel can be lowered. to a new position. Yeah! It's finally stretching out to almost normal. The foot is held in check so there is no more pressure on the area that I was getting pressure sores.

Now I can order my new diabetic shoes! They are long over due.

Nothing is impossible with determination.

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.

Tuesday, September 9, 2014

Exercise After a Stroke

This was forwarded to me by my local stroke group, Brain Reconnect. When you are in hospital rehab, they throw fifty million different things at you in the way of exercises. You'd be lucky to remember half of them and they might not be continued by your hometown therapist.

Such was the case with me. While I remembered all the exercises that had to do with my drop foot, and ham string, I forgot the exercise for my Achilles tendon stretches thus I got a contracture of, you guessed it, my Achilles tendon. It's a lot better the prevent it than trying to fix it.

The program is called "Stroke class with Susan" and it is on YouTube. This one exercise would have saved me a lot of pain, built up shoes and AFO modifications.

Anyhow, I've spent the week emailing back and forth with Darren Baxendale, the business manager, about this stroke class. Because it's new and I thought it would be helpful to us stroke survivors.

The website just just touts a free trial with the first session starting tomorrow, 9/10/2014, but it's whenever you can tune in. That is a definite draw for me. Before I fell in love with the class, I wanted to know what it was going to cost me when the free trial ran out.  As tight as our personal finances are, I didn't want to take the chance of losing another thing that could help me.

The answer is...they don't know how much to charge yet. It's an interest gauging type thing so that's why it is a trial. So I signed up for the trial. It is supposed to run weekly so I'll just have to wait and see like everyone else. I just hope I can swing it because if nothing else, it might add some oomph to my routine. I'm always looking for new ways to do stuff, aren't you?

All the videos will run like the one above and be more involved. Hopefully, Darren will answer the questions I sent him in my last email and I'll get some more information. As I get it, I'll pass it on to you. Maybe even do some PR for them with an interview.

Nothing is impossible with determination.

Sunday, September 7, 2014

Sunday Stroke Survival ~ Self-Advocating

Someone emailed me recently and said they were tired of being their own advocate.It is often a thankless job where you are knocking your head against brick walls.

I understand.

But then, I've always been an advocate in one form or other. I fight for what I want. I'm a Don Quixote of sorts tilting at windmills. I refuse to see injustices and the little, often helpless, person get stepped on. But that's just me. I'm wired that way but not all people are.

I also believe in being proactive in the things that really count. This includes matters dealing with my family especially.

Way back in the early 70's, I spoke out as an ombudsman for the Lung Association. It was mainly a public appearance type position, but I took it seriously. Who knew then I'd have a husband with COPD? Not me.

The mid and late 70's through the 80's, I was an ombudsman for a naval squadron. Ombudsman/advocate/trouble shooter and solver. Yeah, I wore a lot of hats even back then.

In the early 80's, I found new new challenge to take up. This was very personal. It involved my two year old daughter who was diagnosed with Rheumatoid Arthritis. I studied, educated myself and others until I headed the entire southeast region.

In the 90's, I found myself being a child's advocate because I had a TBI child in public school. The kids had a way of being drawn and speaking to me. I became their voice because I was an adult and surely, adults would listen to another adult faster than a child. I also became the voice for disabilities at the local college for the same reason. This was before ADA. All these positions over lapped each other. They were underdogs who needed a champion.

I guess most of this was because I have a big mouth. If I believed in something, I just couldn't leave it alone if improvements could be made. Now I find myself recovering from a stroke. Yep, I'm an advocate again.

I know I'm not the only one going through all this stuff alone. I also have the ability to speak to everyone and anyone no matter their station in life. I can be pushy. I can be compassionate. I can be the teacher. I can be the student. I can get my  point across to anyone willing to listen and even to those who don't.

Being self advocating is a tireless, unending job. But then again, who better to make your point than you. You know better than anyone else what you are going through. Okay, so you don't like being pushy, the center of attention, and can't put the words together to make your point.

Even Moses didn't believe in himself in the beginning so he had Aaron speak for him. We all know what results that had. Aaron had no power or authority like Moses did. We are all like Moses in the beginning. We have to get angry or very upset to speak out. That's okay, if that's what it takes to get you into action.

Do I ever get tires of fighting and beating my head against the proverbial brick wall? Oh yeah! I am after all, only human. The past couple of weeks has been up to my eyes in frustration to the point of being a weepy mess. But today, I was measure and molded for a new AFO. After almost a year of fighting and pressure sores, I won against the insurance company. They will cover my new AFO 100% instead of 75%. Some battles take longer than others. I also changed their policy about a new AFO only every 5 years.

My battle for Botox took 4 months.

My battle with the grocery store about their parking took 1 week before they added extra space to their handicapped parking instead of just painting the space blue. ADA regulations helped with that.

Before you can self advocate you must do a few things to succeed...
  • Educate yourself.
  • Get your ammunition ready. Get all your ducks in a row and circle the wagons because if it's gonna cost them, they'll fight back.
  • Put on your big girl panties/ boy's briefs because you are going to be at it for a while. Think a filibusterer in Congress. You have to be an adult or they will chew you up and spit you out.
  • Armor-all your skin because you'll need a thick hide.
  • Stick to your guns.
  • Don't take "no" for an answer. You can compromise but you will not accept no.
  • Talk to others. More than likely they are having the same battle. There is strength in numbers. You don't have to go it alone.
  • Surround yourself with supporters. There will be a mountain of naysayers trying to chat in. Ignore them.
  • Enjoy your hard earned victory. Or if you are not victorious, go back to the beginning and try again bringing more and better ammunition.
  • The only time you face certain defeat is when you give up.

Nothing is impossible with determination.

Wednesday, September 3, 2014

Things that make me go GRRRR!

The ignorance of some people! Case in point.

I was in OT yesterday when I noticed my shoulder had a catch in it during one of the stretches. I told my OT about it and she asked where. I pinpointed the spot for her, because I hadn't had it do it before. I'm a firm believer in open communication during therapy.

She said she would try to fix it. Sometimes the muscle kinked under the shoulder blade. She had me roll onto my left side and she began doing a pressure point maneuver around the shoulder blade, and lifting and moving the scapula. No big deal, it was helping.

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There was this guy in the next area watching us while he was sitting on a yoga ball working on stretches for his lower back. I know the exercise all too well. He was complaining about the steroid shots the doctor had given him and how he hated shots.

"Women come here and get rubbed on while us men folk have to work up a sweat." He said it loud enough to where half the open room heard him. Even my old PT heard him and looked up from his computer station in the center of the room.

Giving him the benefit of the doubt, and I tried to focus on relaxing my shoulder so the OT could do what she could do to fix the problem, I basically let the comment slide.

He couldn't leave well enough alone. "I'd change places with her in a heartbeat."

Both his PT and my OT looked at him, and told him that he wouldn't trying to defuse the situation from further comments both knowing I was about to responded. He just chuckled, "Sure I would.Y'all just ain't got any idea of what I've been going through."

I probably should have let this slide, but I didn't. I opened my eyes and not raising my voice above normal I asked him, "Really?"

Both therapists looked to the ceiling. They'd tried. They knew what was coming. I'd verbally Jap slap him (as only a Japanese person could do) and make him feel two inches tall.

He nodded his head with the sweat from his exercise emphasizing the motion.

"Yeah, I'll trade your lower back strain for my paralysis and spasticity from my stroke any day," I responded. "It's been two years of therapy, fifteen plus injections every four months, and charlie horse like pain that lasts for hours with no end in sight. Not to mention, relearning everything I once knew how to do. Yes, I'll trade with you any day."

With that I closed my eyes and focused on relaxation. I never once raised my voice above normal conversation tone. There was no bluster or fluster. It was just a statement of facts as I knew them.

Then he really looked at what my OT was doing for me. How she was having to lift my arm and hold it into position while she put pressure on my shoulder blade and the AFO on my leg.

He muttered something about being sorry and he didn't want to trade after all.

I shouldn't have done it, but he ran headlong into my abhorrence of ignorant/thoughtless people side of my personality. My momma always taught me to think before speaking because once something is verbalized, it's out there. Maybe his momma should have taught him that.