Jun 2, 2018

When Is Enough Exercise Enough? aka There is Good and Bad Hurt...Do You Know the Difference?

[This post is to all chronically-ill people, their caregivers (or personal assistants as I call them), their family, people who suspect a chronically disease eventually because it runs in the family, and that equals a lot of folks.]

I came across this statistic: By 2030, as many as 11 million people could be living with stroke as more people live longer. Yikes. Research time.  

The title from Flint RehabMore Is Better… Except When It’s Not, caught my eye. 
Flint Rehab says, "While repetition [of exercise] is important, too much exercise can start to hinder your progress. [Uh huh.] You need a good amount of rest and sleep in order to successfully recover."  

Something, but still nothing that answers my question specifically.  

And it got me thinking, because most times for me, it's never enough. Then when I hurt badly, aka when enough is more than enough, I turned to guilt because for several days, I rested my weary bones. One step forward, one step back, kind of thing. No progress at times. None at all.

When I achieved rest, and dreaded naps, it messed up my sleep, aka circadian rythyms. Then I couldn't go to bed before 3am. That's 3am on a good night. Now, I don't take any naps. And yes, I am tired, but it's a trade-off. I want to have good results with my exercise instead of giving in to my fatigue.

Now, I set the alarm on my cell for 15 minutes no later that 1pm. The power nap routine! That's just enough rest to re-fire my engine and sleep, aka nap, or not fall asleep. With my  eyes closed, it's still rest.

But I digress. This post is not about circadian rhythms, let alone mine. It's about exercise, specifically, "Am I doing enough exercise and how do I know when I reach that point of, it's enough?"

The Stroke Foundation across the other pond, aka Australia, says the repetition is the main focus on improvement. 

"Regular activity will help you to continue your recovery. Exercise improves your fitness, your general health, and reduces your risk of having another stroke." 

That means not when you feel like doing it but doing it every day. But nothing in that article addresses "when is enough exercise enough." I plowed on.

Then I came across this: Exercise is a valuable yet underused component for post-stroke care, according to an American Heart Association/American Stroke Association scientific statement. [Hmm. Now we're getting somewhere.]
"There is strong evidence that physical activity and exercise after stroke can improve cardiovascular fitness, walking ability, and upper arm strength," said Sandra A. Billinger, P.T., Ph.D., lead author and a physical therapist at the University of Kansas Medical Center in Kansas City, KS.
[Read more, I said.] 
"Yet, too few healthcare professionals prescribe exercise as a form of therapy for stroke. There is a big gap in America once stroke patients are discharged from rehabilitation and the transition to community exercise programs when they go home. Many are left on their own. [I was.] We don't have a system in place to help stroke patients feel comfortable with exercise.

And here it was:

"The general recommendation," says Billinger, "is that survivors exercise at least three days a week for 20 to 60 minutes, but that depends on their individual functional capacity. For many stroke survivors, multiple 10- to 15- minute bouts of moderate-intensity exercise may be better tolerated.

Aah. Hard data. At last. I was striving to do the exercise every day. It was too much, the good doctor implied. Every day. Core strengthening, 15 reps, 3 sets, the same with marching and leg stretches and Thera-band leg pulls and lifting my legs outward and behind me while holding on to the countertop, one leg at a time, and walking the halls for 500 feet, and weights, left hand only. 

Now I alternate with walking the halls and weights, and the other stuff aforementioned. I just started last week but no pain. I feel the good hurt. Life is good at the moment. I have the feeling that I found the key.

But Stroke is an ongoing mystery to find the other keys. Always a key. 

May 13, 2018

10 Things You Probably Didn't Know About Brain Bleeds

It's quiz time! 

If a hemorrhagic stroke could happen to me, with both low cholesterol and blood pressure, no diabetes, and a non-smoker, it could happen to anyone. Or is it an aneurysm? Now I know! And even more.

Here's 10 questions about brain bleeds. Write down your answers and compare them with the real answers below. Let me know how you did. 100%? In your dreams! (But maybe). Good luck.

1. Is a hemorrhagic stroke the same thing as an aneurysm?

a. Yes, they're the same

b. No, but a hemorrhagic stroke is one of the most usual kinds of a ruptured aneurysm

c. No, but a ruptured aneurysm is one of the most usual  kinds of a hemorrhagic stroke

2. A cerebral aneurysm is

a. a thin or weak spot that can occur on a blood vessel of the brain

b. random with no known cause

c. a thick spot that can occur on a vein in the brain

3. A hemorrhage stroke

a. is not emergent and which requires immediate bed rest at home

b. is a medical emergency that requires immediate treatment

c. is a medical emergency that always requires an operation

4. A hemorrhagic stroke

a. is more common in women than men

b. is more common in men than women

c. splits 50-50 among genders

5. Symptoms of a hemorrhagic stroke usually occur 

a. when the person is awake

b. when the person is asleep

c. both a and b

Most brain aneurysms

a. don't rupture

b. don't create health problems or cause symptoms

c. both a and b

7. Although aneurysms can appear anywhere in the brain, they are most common in arteries

a. at the top of the brain

b. at the base of the brain

c. anywhere in the brain

8. Go to the hospital immediately if

a. you have a mild headache

b. you have the worst headache ever

c. if you have insurance

9. Among the first blood tests in the event of an ruptured aneurysm is to determine

a. your ability to clot

b. your stress level

c. your cholesterol 

10. Usually, hospitalization is followed by a period of living in a rehabilitation center, where additional intensive stroke therapy may be provided

a. to assist the patient with financial responsibilities

b. to help the patient recover as much physical and speaking function as possible

c. to make the patient aware of all the negatives

Answers: 1. c , 2. a, 3. b, 4. a, 5. a, 6. c (a brain aneurysm that doesn't rupture is often detected during tests for other conditions), 7. b, 8, b (whether you have health insurance or not, the hospital has to treat you, but you may wind up with a huge bill if you don't have health insurance), 9. a, 10. b

Apr 8, 2018

Acupuncture--It Isn't For The Faint Of Heart, aka Needles In My Body? You've Got To Be Kidding!

I have, at times, a painful lower back and, since we're enumerating, a restless leg and arthritis in the hip, as a result of the stroke, the latter from bad posture I constantly (except when I'm not) try to correct. I tried everything around the house--heat packs, cold packs--and wasted a lot of money on Lidocaine-based, over-the-counter products from the pharmacy. But three weeks ago, I had an epiphany, truth be told, from desperation. Acupuncture! There are many places in Portland that offer it. But first, a little background.

Acupuncture, in a broad context, is a process in which skilled practitioners insert fine, thin needles through the skin in an effort to eliminate or lessen pain in the lower back, neck, and osteoarthritic knee, headache, migraine, dental pain, and nausea, for example.  The downside is substantial if a practitioner uses non-sterile needles which can cause infections, punctured and collapsed organs, and injury to the central nervous system, but in the hands of an experienced practitioner, (and if you're desperate enough), in my opinion, it's worth a try.

With the help of herbs, diet, and massage, acupuncture flourished in China and slowly spread around the world but was disdained by Western medicine. Yet today, even in China, there is confusion and mystery over just how acupuncture works.

From the NIH (National Institutes of Health), comes the bottom line: "Results from a number of studies suggest that acupuncture may help ease types of pain that are often chronic such as low-back pain, neck pain, and osteoarthritis/knee pain. It also may help reduce the frequency of tension headaches and prevent migraine headaches. Therefore, acupuncture appears to be a reasonable option for people with chronic pain to consider. However, clinical practice guidelines are inconsistent in recommendations about acupuncture.

"The effects of acupuncture on the brain and body and how best to measure them are only beginning to be understood. Current evidence suggests that many factors—like expectation and belief—that are unrelated to acupuncture needling may play important roles in the beneficial effects of acupuncture on pain."
This from one site: Check acupuncturist's credentials. Most states require a license, certification, or registration to practice acupuncture; however, education and training standards and requirements for obtaining these vary from state to state. 

 I did and found this:

Although a license does not guarantee quality of care, it does indicate, Dr. Lu in my case, that the clinician is up to standard in the use of acupuncture. Some conventional medical practitioners—including physicians and dentists—practice acupuncture. But I couldn't find one. Ergo, Mercy and Wisdom Clinic. 

Mercy and Wisdom is weird both in the waiting room and the acupuncture rooms, the former having very low seats that I struggled to get out of and the latter, simply put, old fashioned with its high examining bed and it archaic case for supplies. But other than that, Dr. Lu knows her stuff. 

When I first met her, she explained how Chinese medicine was different than the Western kind, in engaging detail. It was all about having blockage where you shouldn't. And then the needles came out. It hurt at first, but Dr. Lu reassured me that the needles were placed where they were needed because if they went in to easily, that means they weren't addressing the blockage. The hurt went away in less than 5 minutes.

The needles, and 20 more, stayed in for an hour, and they were placed in something she called channels. She said my arm which has been dead for nine years could move, too. Dr. Lu suggested I'd walk for exercise. So I did, up and down the hall. My assistant, Joyce (I call her Joyce 2), came with me each time, and she was a key factor in my relaxation. Dr. Lu said I have to go a month to notice results with my sore lower back, my restless foot, and arthritis in the hip. She told me to avoid the night shade vegetables and fruits for arthritis: eggplant, tomatoes, peppers, and potatoes.

I stopped taking the Oxycodone after the 2nd visit. Maybe there is something about pain and acupuncture after all. I'll write and let you know when I take a significant step. 

Mar 15, 2018

My Sons, My Sons and the Makeshift Playroom

I have two sons. 

It was in the late 90s when a childless friend asked me during a hectic, weekday lunch, out of the blueish of blue, "Do you think I missed anything by not having kids?"

I answered him directly, "You love to travel. You went to places I didn't know exist. Travel with kids isn't always a possibility." 

But to myself, I silently shouted, "Hell, yes!" 

When my boys were young--one 7 and the other 2--I built them a playroom in our dingy basement with exposed pipes and a low ceiling, albeit high enough for them. Earl, my handyman, bought fluorescent lights and hangers that suspended them (that made the ceiling a teensy-bit lower). 

He bought a used television (he knew a guy) from which they would play video games. He installed a solid shelf for the television because boys will be boys. (If you don't know what that means, ask someone with two or more sons). 

He installed a heater/air conditioner unit because my thought process was it will be a 12-month to do. (And it was). He paneled part of it (my idea) and painted the rest (his idea) a soft yellow. And last, he installed a rug bought as a remnant but covered the whole floor because he made it fit. (The rug had 5 seams and Earl was good at math).

When it was finished, I brought the kids downstairs to see the outcome. It might have been put together cheaply, but it was the "playroom" and they loved it. 

Soon after, I built a 4x6 train set with fast-moving trains and railroad crossings and tiny people waiting on the platform in the playroom. Even though the planks of wood were wobbly (upper arm strength isn't my forte), it satisfied my sons.

I catered parties down in the playroom. Birthday parties, half-birthday parties, graduation parties starting with preschool. And more parties just for the sake of parties, many of them sleepovers. 

And then one by one, they left for college and stayed there after graduation in two respective different cities, both 6 hours from the house. That playroom existed as a monument to great, great times. 

It was followed by my bouts of depression and I asked the biggest question over and over again: Is that all there is? Sullen moods went on for a bunch of years until the youngest one graduated from college. And then a miracle happened a few years later. 

Both boys invited me, in the same year, as a guest visitor to see what they did for work. The older son, a Senior Programmer, showed me his workspace and explained in detail what he did to make things work and do what they did. My younger son, a Systems Administrator, showed me his workspace and what he did for networks, the lines of communication, to exist.

It was then I stopped thinking of them as children and moved on. 

My two sons were making a contribution and were self-sufficient. Isn't that what every parent wants? 

My stroke happened shortly after, and I knew, in all that despair, that my sons were going to be fine. Every time I thought that way, it led me to smile. 

Feb 11, 2018

Oxycodone and Me, a Failing (and Falling) Relationship

I last wrote the blog around Thanksgiving. And then I stopped altogether. Not because my ideas ran out. This post is now written and published, taking me 5 days in the process because of the pain when I sit too long. 

Let me give you the timeline and you'll see the consequences rather quickly, I imagine.

November 28: I had ear surgery because my eardrum had a hole in it caused by increasingly larger tubes to hear. The surgery was successful and the Oxycodone was effective to avoid the ear pain. 

November 28-December 5: I have a low tolerance for pain and took 7 to 9 Oxy tablets the first week to maintain my level of comfort. 

December 6-13: Then the second week 6 to 8. I wasn't a drug addict yet but on my way because, truth be told, because Oxycodone is a narcotic, and the rate of people taking taking too much narcotic(s) and dying is at epidemic proportions across all populations--the rich and poor, the professionals and the unemployed, the brain trusts and the brainless. Thus, I always asked myself, Am I in pain pain or is the pain tolerable? But I always opted for the Oxy because I had become chemically addicted. 

December 18: I was in the beginning of my third week taking Oxy as much as the second week when I fell to the floor around 1am and hit the end table next to my bed. I called my son to bring the key over to let the paramedics in on my iPhone, or what I call my lifeline. Then I called the paramedics and soon realized, in the post-surgery, perpetual state of Oxy-controlled haze, that I should go the hospital because I hit my head from a standing position and my ribs ached.

The ambulance, with sirens flashing, brought me to the hospital and while there, the ER doc ordered a CT scan of my head and X-rays. He gave me Tramadol and then Dilaudid to ease the pain. Then he gave me Oxycodone, the drug I had been taking following the ear surgery. The results of the tests showed my head wasn't affected, but 2, maybe 3 of my ribs were broken. The ribs take roughly 8 weeks to heal in a young person. Mine will take longer.

December 18-January 23: I ended up in the rehab facility across from the hospital. By the time I left the facility, I was down to 2 Oxycodones daily. Now I avoid them sometime because the pain is less and it is tolerable. I was chemically addicted and now 2 or less a day. I consider myself lucky, addicted-to-narcotics wise. 

January 23 to present: I returned home. My doc ordered 60 more Oxy just in case I still had ongoing pain. They're still waiting at the pharmacy. 

Of course, it was the Oxy that made me lose my balance and fall. I should have taken my time instead of going at my normal pace. But the Oxy operates differently. It makes the brain think it's invulnerable. 

Bottom line: I didn't read the brochure from the pharmacy that came with Oxycodone explaining the side effects like dizziness and the falling risk, but I should have. Oh, yeah. Lesson learned too late.

Nov 18, 2017

Go to Hell, Black Friday! aka The Top Ten Things I Am Thankful For On Thanksgiving

Right around this time of year, I often write about the misadventures of Black Friday, but I've finally learned not to participate because as a stroke survivor, I have fears of getting trampled or shot or assaulted, though it's not without basis, and one of so many stories.

Here's an example that occurred in 2011 as reported by the Huffington Post that game me pause. "A Black Friday shopper who collapsed while shopping at a Target store in West Virginia went almost unnoticed as customers continued to hunt for bargain deals. Walter Vance, a 61-year-old pharmacist who reportedly suffered from a prior heart condition, later died in the hospital. Witnesses say some shoppers ignored and even walked over the man’s body as they continued to shop." (Want to see more? Go to http://blackfridaydeathcount.com. You might be Amazon shopping this time forever after!)

Anyway, this time I am posting about what I am thankful for on Thanksgiving (in that partially made-up story about the Pilgrims and the Indians whose land we stole even though the Indians were here first. Just sayin'). Make no mistake. Those who know know me realize that my life had given me tough times, some necessary detours, to get around the shit tossed my way, and this is not a time, meaning never, to elaborate. So here are the top ten things for me to be thankful for.

1.  I am grateful that I am alive. I was close to death 8-1/2 years ago, with no thanks to my hemorrhagic stroke, but here I am, getting up and dusting myself off when another piece of crap goes flying my way. Why am I here still? As my son says, you're too annoying to die. Granted, I am pushy, and with that comes the will to live. And positivity is a part of that attitude. But the overwhelming positive side, truth be told, is, if I wasn't laughing, I would be crying, making my baggy eyes even baggier. So every day, I make a concerted effort to wake up happy, even if I'm not, because who wants to waste all that energy on being negative. (Sorry for that, but that's what's called an interior rant, aka stream of consciousness).

2.  I am grateful for my 2 sons (who shall remain nameless) who give me thoughtful insights at times when I most need it. I give them thoughtful insights, too, with the response always being, "Mom! Don't try to FIX things! You're meddlesome!" They say I am controlling, and maybe I am, less so as the years go forward. But I know they heard me and will think about my words, often later taking my suggestions. I don't say a word.

3.  I am grateful that I learned about a year ago how to successfully (the operative word) tie my shoes one-handed. This procedure, too, was borne of necessity. There just isn't somebody around at times. Video forthcoming in YouTube.

4.  I am grateful that I learned that the best Personal Assistants anticipate my needs without my saying, "Could you...." The only two that showed up for the interview in Speedboat Coffee in Portland (I was expecting eight) were Norma and Joyce #2. I couldn't ask for better. I often say, "Thank you! Thank you! Thank you!" And I mean it.

5.  I am grateful that I learned, through my weekly sessions in counseling, not to live in the past. The sessions went on for about three years. I'm a slow learner, meaning I'm bright yet stubborn, and it took a lot of time for my counselor to break through the barrier of obstinance. Great work, T.

6.  I am grateful that I learned that I shop online just to make me feel better. Amazon Queen, they call me (not to be confused with Queen of the Amazons, a 1947 flick where a woman's husband has disappeared on an expedition into the jungle and she discovers that he has been captured by a savage female tribe. Campy, right?) After many procedures and an operation, not counting the two upcoming this month, what's wrong with a little shopping therapy! It's cheaper than "talk" therapy and at least I enjoy the online trip with laughter and total glee without ordering needlessly.

7.  I am grateful that I learned that I like a lot of plants. I mean, OBSESSIVELY A LOT! Around twenty in front of an almost floor to ceiling, three-paned window. I'm allergic to cats and I can't walk a dog, plus birds are too much work, and fish don't do it for me. But my maternal instincts are still in play, so I take care of plants. Rather, my Personal Assistant waters them, feeds them, and gathers errant leaves that have somehow fallen off. I just watch them, keeping a loving eye on the plants that never move.

8.  I am grateful that I learned about the iPhone, more than just texting and clicking an app to activate it. Katie and Jody in Pittsburgh taught me so much and now Norma and Joyce #2 have taken over. But I'm grateful also that I can text with one hand. Life is good. I got the iPhone later than most people. Read about it in my post from 2015: https://stroketales.blogspot.com/2015/01/why-i-still-have-flip-phone-aka-i.html

9. I am grateful that I am never once bored in my apartment. Between writing, reading, and going to the refrigerator or kitchen cabinet to give me an excuse once an hour to stand and move, sometimes often without hunger, I keep busy. See my post about sitting too much: https://stroketales.blogspot.com/2013/07/the-5-ws-and-h-of-getting-up-and-moving.html

10. I am grateful that I am not associated in any way with Donald Trump, Louis CK, Kevin Spacey, Harvey Weinstein, Bill Cosby, and scores of others, some of them still yet unknown, who brought shame upon themselves and anger, tears, and painful memories to their victims.

Now that we ended on a bad note, let's get back to the point. So tell me, dear reader, what are YOU thankful for? Write in the Comments section below. And Happy Thanksgiving!

Nov 12, 2017

Stroke Survivors Alert: The Way to Nap, aka It's Siesta Time!

Cornell University social psychologist James Maas coined the phrase "power nap." Just 15 or 20 minutes each day, sometimes twice a day if your day is long enough, will give you new-found energy. The reason for just 15 or 20 minutes is, any longer and it will make you groggy because your body will ultimately fall into deep sleep, and waking up during a deep sleep stage makes no sense.

The CDC says (if it isn't sleep disturbances such as nightmares from the medication or leg spasms that go on and on and, yes, on), more than one third of us are sleeping less than the recommended 7 to 9 hours each night.

"The power nap is a godsend," Dr. Maas added, sleep expert and past chair of the Psychology Department at Cornell University. "If you want to nap longer, make sure you have a solid 90 minutes. That'll allow you to get through a full sleep cycle, so by the time you wake up, you'll be back in the lighter stages of sleep and able to get up and actually feel refreshed." 

Dr. Rachel Salas, associate professor of neurology at Johns Hopkins, says, "Humans have a normal, natural dip, in our circadian rhythm, in the afternoon. That’s actually prime time to take a nap." Especially that post-lunch energy crash, she adds. 


Many experts say make the surroundings as dark as possible and use earplugs or even download a white noise app from your phone. Salas recommends an eye mask, too, because light can pass through the eyelids and still be disturbing your ability to take a nap.

The "coffee nap" has been talked about, too. The thinking is  if you drink a cup of coffee, set your alarm for 15 or 20 minutes, and take a power nap, the coffee takes about 20 minutes for caffeine to absorb into the body and then you're prepared to awake.

But Maas says, "Anybody with insomnia should never power nap, because it's going to make it worse. If you're having trouble going to sleep at night or have disruptive sleep where you're waking up in the middle of the night, the first thing you have to look at is if you've been napping during day." 

That recommendation also applies to sleep apnea. "Even a short nap can be unrefreshing if the quality of the sleep is disrupted by apnea," says Maas, who suggests seeing your doctor or a sleep specialist to rule out any underlying sleep disorders.

My problem was, I'd gotten into a bad habit. Because my Personal Assistant liked to sleep in, I started awakening at 11am and nodding off at 4am . Now I know better. Even if it's a 2-power nap day, I go to sleep at 11pm and arise at 7am. It was a hard transition getting to be an early riser--it took me about 3 weeks, but it was worth it. Carpe diem!

Oct 29, 2017

In the Hapless Wheelchair: Talk To Me When You're Talking To Me!

It was a recent HBO limited series called The Newsroom. Starring Jeff Daniels as Will McAvoy, a cantankerous insomniac and often narcissistic news anchor, he became involved in a scuffle with the producer (Thomas Sadowski) who calls Will a scumbag (not exactly his words--worse even), but the producer addressed Charlie Skinner (Sam Waterston), the news director, instead of Will, and Charlie said, "Talk to him when you're talking to him."

You got all that? It's very important that you do because of the next part of my story. If not, re-read.

So this is what happened yesterday, but it's sort of the same story that happens every time since I had the stroke. Sitting in the wheelchair doesn't help, but for long trips like Walmart or the supermarket, it's a necessity. A man or woman addresses my Personal Assistant, who travels with me because I am disabled and cannot drive. But this crystal clear-thinking woman--me--is ignored. Somehow, I become invisible, a ghost, or I am addressed in the third party.

The woman in Kohl's says, "What is it she's looking for?"

The man in Dollar Tree says, "Does she want red or blue?"

The teenager at the check-out window in Dunkin' Donuts says, "Should I make her tea iced or hot?"

"Hello," I said to myself silently. "I'm right here."

Ultimately, I got tired of the ghost role and this is how I empowered myself to do something. Big time.

I was in the Department of Motor Vehicles to inquire about the status of my identification card, aka my non-driver driver's license, which never arrived in the mail. We went up to the window and, because I was sitting in the wheelchair, my PA, who was eye level with the representative, asked about its whereabouts. The line behind us was extensive.

"I don't know. Let me check. Do you know when she applied?" asked the man.

"Three weeks ago," my PA said.

"Oh. Here it is. There was some quirk in the system and it wasn't sent out. Let me try again. Here's an Oregon certificate of residency [which I didn't have anymore] that should help her out if she's needing it. But she shouldn't. You're her driver, aren't you? And she's not going out of the country," he chuckled.

That was it. The crushing chuckle, bordering on guffaw. With the seemingly endless line in back of us, and with the wheelchair locked, I stood up straight at my full 5', 5", tired of being a ghost any longer. I turned a bit to broadcast the message.

"As a matter of fact, I am going out of the country," I lied and shouted with unabashed glee. "I'm the Goodwill Ambassador for Russian Diplomatic Affairs, appointed by the president himself. I'm leaving Friday," I said, taking the first country that came in my mind a la Trump and the title I made up as I went along, leaving the first 10 people behind me looking with a newfound admiration.

I added, "And by the way, talk to me when you're talking to me."

I sat down in the still-locked wheelchair, looking serious as ever. She unlocked my brakes and we turned and left. I was proud of my exuberant bullshit, even prouder that I advocated for myself. I willing to say that man learned a lesson. But then again, maybe not. Either way, I was overjoyed at my newfound readiness for extemporaneous speech which I didn't have ever after my stroke.

Oct 12, 2017

Hey, Hospital Administrators: Be the First to Revolutionize the Healthcare System for Stroke Survivors

I have thoughts, good ones at that, even though I had a hemorrhagic stroke and a portion of my brain cells died, never to appear again. That's all right. I compensate with little tricks that make me able to pretend I have the brain I was born with. 

But just talk, no action has been the status quo with stroke survivors, even though they contribute to one of the most disabling conditions. So I'm going to dare hospitals to do this because no hospital has done it before--revolutionize healthcare for stroke survivors. 

Hospital Administration

Greetings and with all due respect to hospital administrators. You have a difficult job, keeping the balance between doctors and nurses (some of whom are un-balanced) and the rest of the staff running smoothly, or just running. You aren't afraid of suggestions, are you? Well, then, use your smiling (albeit even if you don't feel like it) visages to approach this thought. 

Your facility could be "on the map" even more than it currently is. Be the hospital that stands out from the rest if you follow this one revolutionary suggestion for stroke survivors.

Before I tell you what "it" is, don't tell me you can't afford it because, truth be told, it's the missing piece. Doctors and RNs and the rest of the staff don't need perks, like the spreads you lay out for them, to keep them loyal. Just saving on food alone could make this idea more of a reality. If they really want to help people, and I'm sure most of them do, they'll stay put in your hospital. And your salary more than justifies my proposal. Ready?

When a stroke patient is admitted, have a psych team at the ready as soon as the patient is awake and comprehending, who reads the survivor some strict rules every day for at least a week BEFORE therapy starts. Crying will most likely happen. And that's all right. Emotional release.

Let me give you background on this thought because I've been thinking about it ever since I had my stroke eight and a half years ago. 

I was depressed (it went on for a year, less and less after that) and thus, at times, I was non-compliant. I was in a coma for 8 days and didn't talk for 5 weeks. And that was the easy part. What's the tough part, you ask? From the time I started talking, I would always ask questions at Bacharach Rehabilitation in Pomona, NJ, questions that could have been answered by the not-yet-formed psych team before I started therapy.

Instead, a question to the therapist: "What happens if I don't do leg lifts?" 
An answer from the therapist: "Just do them, ok?"
An answer from the not-yet-formed psych team: "Do everything the therapist says or else you'll be in a wheelchair longer."

A question to the nurse: "Why should I wear support stockings?"
An answer from the nurse: "Because you should."
An answer from the not-yet-formed psych team: "Do everything the nurses say or else you'd delay getting better."

A question to the doctor: "Do I really have to wear the eye patch for double vision?"
An answer from the  doctor: "Didn't you comprehend what I just told you?" 
An answer from the not-yet-formed psych team: "Do everything the doctors tell you because they're trained to give you good advice."

A psych team. For at least a week. Every day. Before therapy starts. To get stroke survivors ready to bust their asses and cooperate with the staff. Who's ready? Anyone? Anyone? Contact me through email and I'll go anywhere in the continental US to make this happen. 

I have thoughts indeed.

Sep 25, 2017

Caregivers Should Take Notice; Those They Care For Should Demand More

One never knows when he or she will be a caregiver. I lived in New Jersey for 17 years with my ex-partner. In the 12th year, I got a hemorrhagic stroke and at first, he was my caregiver. Role reversal indeed. But soon it overwhelmed him, not to mention the dangerous risks that I took, falling many times because I craved to be independent. In retrospect, I was selfish and stayed longer than I should have. The relationship was doomed and I understood why. I believe he did, too. And soon, I had to seek other caregivers, for both of our mental states of mind.

I started this blog in 2010 to mentor stroke survivors and, truth be told, to mentor myself, in a cathartic way. By writing about brain trauma, I became a stronger person, and I have my mother and father to thank for that.

Anyway, one day, in 2017, I received this email from Sally:

"My name is Sally and I am writing because as a former Manager of a care home, I learned how demanding and complex caregiving can be. While it can also be rewarding in itself, caregivers need all the help and support they can get.

"Now I work as the Content Manager for a small senior care site and I felt it was important we create a full resource guide for caregivers. It covers 30 essential sources of information and support for all kinds of caregivers."

She went on to say:

"Recently, I came across stroketales.blogspot.com and having read http://stroketales.blogspot.com/2017/02/the-caregivers-are-venting-and-stroke.html, I feel this is a subject you would like to cover."

Indeed I do, Sally. This advice comes from Sally who didn't have a stroke, but she nails it.
Recovering From Stroke: How Caregivers Can Help

Stroke is by far one of the most devastating and sudden experiences that anyone can endure. Those who experience minor strokes have the challenge of rehabilitation, and some patients who go through major episodes of the medical condition face the horrific possibility of permanently losing vital cognitive and physical abilities. Regardless of the state a patient is in after suffering a stroke, recovery is possible with the help of patient caregivers. Here are three key ways for in-home nursing assistants to help their patients, and themselves, get through the stroke recovery process.

1. Stay Alert

It is probable that you've been given very specific instructions concerning medication. It is essential that they follow all stipulations outlined in their prescriptions to ensure a healthy recovery. Omitting even one regulation or falling behind schedule when administering medication can be detrimental to recuperating and may even be life-threatening.

Another area that requires the devout attention of the caregiver is in physical exercise and general mobility. It is possible and even recommended that stroke patients exercise on a daily basis so as to encourage proper recovery. Try and engage in light physical activity, but also be attentive to falls and injuries. It is quite common for those recovering from stroke to lose their balance while walking. You should not write off such incidents as part of the process, though, as every fall presents the possibility of a serious injury.

2. Encourage Good Nutrition

A person who has experienced a stroke is vulnerable to another attack. You should, therefore, eat meals filled with vitamins and other nutrients during breakfast, lunch, or dinner. It is also important that you encourage those recovering from stroke to eat fruits and vegetables more often than they consume foods with empty calories. Chips, milk chocolate, and soft drinks are enemies to stroke recovery.

3. Engage in Self-Care

Sometimes caregivers are so focused on their patients recovering from life-altering experiences such as stroke that they forget to take care of themselves. Such behavior can be detrimental to both the giver and receiver since stroke patients heavily rely on their nursing assistants for support during recovery. Caregivers can improve and maintain health by:
Keeping up with doctor’s visits
Eating a wide variety of nutritious foods
Taking time away from the job or even seeking professional help if the stress becomes too great

If you are a caregiver, then it is important to do everything within your power to avoid burnout. Remember that your stroke patients need you in good health and are excited about the road that lies ahead of them for rapid recovery.
Sally's advice, though, is not only for caregivers. It also is for the patients they care for who should demand, to the best of their ability, that their caregivers stay on track.

The 30 essential sources to which Sally alludes were written by Kristen Hicks, exploring subjects helpful to seniors and their families for SeniorAdvisor.com. Click on the link to learn more about it
  1. https://www.usa.gov/federal-agencies/administration-on-aging
The Administration on Aging is a government organization specifically devoted to providing programs and services to help aging seniors continue living independently. While the organization is primarily focused on the well being of seniors, it includes an Office of Supporter and Caregiver Services that helps provide funding to families for resources to help with caregiving.

  1. Family Caregiver Alliance
The Family Caregiver Alliance is a nonprofit organization that provides services and education programs, as well as doing advocacy work to help encourage government policy that’s helpful to caregivers.
  1. Caregiver Action Network
The Caregiver Action Network provides educational resources for caregivers and a forum to connect family caregivers with others dealing with similar issues.

  1. Rosalynn Carter Institute for Caregiving
The Rosalynn Carter Institute for Caregiving provides support programs and training resources for caregivers, as well as advocacy to encourage greater institutional help for caregivers.
  1. National Respite Network
Sometimes caregivers just need a break. The National Respite Network helps caregivers find respite services that temporarily take over some of the caregiving tasks so family caregivers can take a well-needed break.

     6. Become A Caregiver

If you are looking to become a caregiver anywhere in the United States, look no further than caregivers.com.  They help get families and caregivers in touch quickly and easily and will ensure the family gets the best caregiver they can while matching the caregiver’s skill set to the right family.

     7. Benefits Checkup
Navigating the system of benefits available to seniors is tough, and many seniors leave potential aid or money on the table because they don’t know it’s out there for them. The Benefits Checkup site makes it easier to quickly see what benefits are available in your area that you or your loved one are likely to qualify for.

     8. Family Care Navigator
The support resources available to caregivers vary based on your geographic location. The Family Care Navigator helps you hone in on what programs and organizations are specifically available to you in your state.

     9. National Volunteer Caregiving Network
The National Volunteer Caregiving Network helps connect volunteers that want to help others in their communities with the seniors or people with disabilities that need that help. Volunteers help with things like transportation, errands, and home repairs.

     10. Lotsa Helping Hands
Lotsa Helping Hands is another website that helps connect volunteers with caregivers in their area that need some extra help. Caregivers can put the help they need on the website’s calendar and available volunteers step in to provide help with tasks like meal delivery or rides to appointments.

     11. Eldercare Locator
The Eldercare Locator is a resource provided by the Administration on Aging to help seniors and caregivers find trusted professionals to help with the various services seniors commonly need, like home modifications and legal assistance.

     12. Well Spouse Association
Many senior caregivers are spouses taking care of their partner. The Well Spouse Association helps senior caregivers in this position tap into a larger community of other caregivers taking care of a spouse.

     13. Find Support Groups
Most communities have a number of support groups that caregivers can attend to find others struggling with similar challenges. Often, these support groups are specific to the particular issue your loved one is dealing with, such as cancer or Alzheimer’s support groups. These groups can be an invaluable resource for finding other people who understand what you’re going through and having a healthy outlet for your feelings.

     14. Senior Day Care
Adult day care lets you drop off your senior loved one for the day while you work or run errands and trust that they’ll be in the care of trained staff. Senior day care also gives seniors a chance to socialize and stay busy in a new environment for the day, which many seniors start to need more as they age.

     15. In-home Care
In-home care professionals come to your home for a set number of hours to help out with the care your loved one needs. You can hire in-home care workers to provide basic around-the-house help, or home health care workers to provide health care to your loved one.

     16. Assisted Living
While many families hesitate to take the step of moving a senior loved one to assisted living, sometimes it really is the best choice for everyone. Assisted living facilities have staff available all hours of day to help with the ADLs seniors often need assistance with.

     17. Respite Care
If you don’t want to take a step that feels as permanent as assisted living, but you know you need a break, respite care can take the caregiving duties off your hands for a temporary period.  

     18. Meals on Wheels
A big part of taking care of someone is making sure that they get enough meals each day to stay healthy. For overwhelmed caregivers, that’s not a small task. Meals on Wheels can help fill in with that part of your job in order to take one more thing off your plate.

     19. Independent Transportation Network
Once your loved one can no longer safely drive, getting them out to appointments and social events becomes another difficulty to manage. ITN helps seniors access affordable transportation options that provide the level of help seniors often need.

     20. LongTermCare.gov
LongTermCare.gov is a government website full of educational resources to help people plan for long-term care and understand the options and benefits available to them.

     21. Guide to Veteran’s Long-Term Care
Veterans have even more potential benefits to tap into than most other seniors. If your loved one is a veteran or the spouse of one, this website can help you understand the benefits available to them.

     22. National Institute on Aging’s Alzheimer’s Caregiving Resources
A growing number of people provide care for Alzheimer’s patients, who require a distinct set of skills and knowledge to properly care for. The NIH provides educational materials to help caregivers learn what to do and expect.

     23. Alzheimer’s Association Caregiver Center     
The Alzheimer’s Association is one of the leading authorities on the disease. Their website provides a wealth of information on caring for Alzheimer’s patients based on up-to-date research on the subject.

     24. American Heart Association’s Resources for Caregivers
Heart disease is another common illness seniors face. The American Heart Association provides some educational tips for caregivers helping a loved one with heart disease.

     25. Cancer Caregivers Resources

The American Cancer Society likewise provides resources to loved ones of cancer patients to help provide the main information they need to take care of someone suffering from cancer.

     26. National Parkinson Foundation Caregiver’s Resources
The National Parkinson Foundation provides a number of resources to caregivers of seniors who have Parkinson’s. They also offer a helpline for caregivers that have questions.

     27. Caregiver’s Home Companion
The Caregiver’s Home Companion is a website that includes forums to connect caregivers to one another, and resources that cover many different aspects of caregiving, from the spiritual to the practical.

     28. Next Step in Care
Next Step in Care provides guides for caregivers that help them figure out how to work with health care providers to figure out the next step for their loved one when facing complicated decisions and transition periods.

     29. AARP’s Caregiver Resources
In addition to the many resources they provide for seniors, AARP also provides planning guides and other educational resources for the caregivers that help care for seniors.

     30. Video Caregiving
For those that prefer to learn by video rather than reading, Video Caregiving provides a number of films to help caregivers learn the skills they need.

And one more thing before I go: not everyone is suited for caregiving. It shouldn't be a source of shame. Wrong job is what it is. Caregiving takes patience, understanding, and compassion for angry, frustrated, and low self-esteem patients who are your clients. If you don't have all three, and it's a family member, find an option in the list. If not, quit. Just because you want to have something to do and make money is not a reason for caregiving. Heed my words. They are spot on.