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.