Sunday, December 24, 2017

Don't Make Me Over

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

The following was first posted on the American Stroke Association's StrokeConnection website: 


There are a few problems I have with the world at large. For instance, people kicking the back of my chair. Public nail clipping. Never-ending car alarms. And our upstairs neighbor doing his impression of LeBron practicing jump shots. But today I’d like to vent about one that’s currently stuck in my craw: the unsolicited advice, opinions and comments strangers offer about my disability.

These folks are well-meaning, but they have the stroke rehab knowledge of a cantaloupe. Like my aide, Norma, who claimed her conch soup was a miracle elixir that could raise the dead. I didn’t know what conch was — thought it might be edible Jamaican hooch — so I was all in (doesn’t taste like chicken). Or her friend Monica, who swore that putting nutmeg under my tongue (the actual nut, not ground) would magically return the use of my affected left arm. Well it didn’t, but I did manage to do a better Daffy Duck than Mel Blanc.

I was a newbie stroke survivor, desperate, straight out of the hospital. You name it, I tried it. Now? I’m street savvy. No more magic potions for me. Yet, the advice keeps coming.

Take last week. While Marilyn was finishing her workout at the NY Health Club, I was killing time in the lobby. Suddenly a swarm of fitness instructors poured in. I found myself surrounded like Custer at Little Bighorn, but instead of the Sioux nation I was under attack by a war party of “Baywatch” clones. They fired everything at me: tai chi, Pilates, water-aerobics, kale-filled smoothies and, of course, “The Rock” wanted me to pump iron. Just what I need… half my body looking like Popeye and the other half like Olive Oil.

I reassured the throng of underwear models that I was fine while Marilyn pushed me through the door. We made it to the street only to be confronted by Joe, the neighborhood homeless guy, who yelled, “Hey buddy, your left side ain’t lookin’ too good.” Perfect! He wants money from everybody else, but lucky me — I get opinions.

Two blocks later we reached our building’s elevator and shared it with an elderly woman visiting a neighbor on 16. She gave me the once over, and I knew what was coming.

“Dear, I used to be a therapist ... if you worked hard … made a serious effort … you’d get your arm back … hope you don’t mind my suggestions.” Mind? Of course, I don’t mind being singled out and having to reassure yet another stranger that I’m perfectly fine — ecstatic even.

OK, I’m the crooked painting on the wall that people can’t walk by without straightening. I’ve learned to accept that. I’ve also learned to keep a set of stock answers at my disposal for all disability queries. “I leave my left side like this because _____”:
I dance in a unique Chippendales unit catering to disabled bachelorette parties. Think Special Olympics with a bow tie and a thong.
I play Strokeman, a super hero in an Off-Broadway production. Think Special Olympics with a leotard and cape.
I’m a model for a disabled pin-up calendar (I know, it’s a stretch). Think cheesy Special Olympics.

It seems everyone wants me to go back to what I was. While I’m sure their intentions are good, I don’t want to go back. I need to move forward with who I am now. And, by the way, I’m fine. Really

DVDs of John’s award-winning one-man show, Brain Freeze, are available at For booking information, contact John at

This information is provided as a resource to StrokeConnection readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.
Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

Sunday, December 17, 2017

Holiday ‘new normal’ After a Stroke

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance


On the first Christmas after she suffered a major stroke, Chris Richards was determined to craft her traditional family celebration at their home in Laramie, Wyoming, rising at 5 a.m. for a day of baking, cooking and wrapping presents.

“I was trying to prove I could still do it all myself,” Chris said.

“Everyone was trying to help, but pretty soon she was shooing everybody out of the kitchen,” said Loren, her husband. “We weren’t doing it the way she would be doing it.”

That night Chris wound up in the emergency room, exhausted, suffering chest pain and fearful she was having a heart attack.

She wasn’t, but the Richards family learned a lesson that everyone with cardiac or stroke issues should heed during the holidays: “You can still have your traditions, but things are going to change,” said her daughter, Brittany Board. “There’s going to be a new normal.”

That’s the message that Melissa Carry, M.D., emphasizes this time of year. Carry, a cardiologist at the Baylor Jack and Jane Hamilton Heart and Vascular Hospital in Dallas, said many of her patients have already made lifestyle changes to protect their health, but need a reminder when the holidays come around.

“I tell them when you start thinking about what you’re going to do for the holidays, it’s not about being perfect,” she said. “You have to try to tone it down.”

That means limiting stress by not overbooking too many holiday events, Carry said. It means not comparing yourself to Martha Stewart when you prepare your holiday home. And perhaps most of all, it means thinking twice, and maybe a third time, at the dinner table and the bar.

Disregarding the advice invites many health consequences.

Carry said the body responds to stress by producing adrenaline, a hormone that increases strength and awareness to help deal with a crisis. But too much adrenaline over an extended period causes problems ranging from anxiety to headaches to heart disease.

“As adrenaline levels go up, blood pressure goes up,” she said. “Then you add a bunch of fatty food on top of it and your arteries become unstable. You can have a heart attack. This is our busiest time of the year because people don’t handle the stress of the holidays well.”

Alcohol, meanwhile, “is actually a toxin to the heart,” Carry said. “You can drink too much and go into atrial fibrillation (an irregular heartbeat that increases the risk for stroke). We call it ‘holiday heart syndrome’ and we see it a lot around Christmas.”

Carry has always told her patients not to overeat or drink to excess during the holiday season, and to work in some exercise to relieve stress. In these hyper-partisan times, she has another recommendation to bring to the dinner table.

“I’m going to start telling them, here are some safe topics to talk about,” she joked. “No politics, no religion. Let’s not get upset.”

But the responsibility doesn’t just rest with people who have health issues. Carry said family, friends and caregivers need to pay attention as well.

Chris Richards, the first 
Christmas after her stroke. 

(Photo courtesy of Chris Richards)

“Someone who’s had a stroke or a heart attack that weakened their heart or impaired their abilities may try to do what they did in the past, and they’re frustrated because they’re not able to,” she said. “I have to remind them, ‘You’ve already done this for 40 years. It’s time for somebody else to step up and do it.’”
The Richards family said they tried that first year after Chris’s stroke, but gave in too easily. They haven’t made the same mistake since.

“Before the stroke we’d sit on the couch and ask if she needed something and she’d say, ‘No I have it,’” Brittany said. “Now we don’t ask. We all pitch in a lot more. You have to stay aware as a caregiver, making sure they don’t overdo it.”

The result, she said, is a better Christmas.

“It’s made us closer,” Brittany said. “We’re able to step back and say we’re having another holiday together and that’s what matters. In 2014 (when Chris suffered the stroke), we weren’t sure if we ever would.”

Loren agrees, with one wry addendum. “Everybody pitches in,” he said. “But we still do it her way.”

If you have questions or comments about this story, please email

American Heart Association News covers heart disease, stroke and related health issues. Not all views expressed in American Heart Association News stories reflect the official position of the American Heart Association.

Copyright is owned or held by the American Heart Association, Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

Sunday, December 10, 2017

Life without Logic

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

The following was originally posted in the StrokeNet Newsletter 
December 1, 2017. 

By David Wasielewski

Memory and Function Deficits

Many stroke survivors experience deficiencies in memory and executive function after their stroke. These issues can be similar to those experienced with Alzheimer’s. The survivor becomes unable to process any multistep processes or process a logical train of thought. This can be frustrating for caregivers as it appears that the survivor is purposely ignoring instructions. Somehow these folks just refuse to listen or understand, no matter how much effort is put into explaining the process and their part in it.

Speaking loudly and slowly makes no impression. In fact it makes things worse. The survivor becomes aware of the frustration and anger but cannot determine why it is their ‘fault.’ The only thing left is bad feelings: frustration, anger and sadness. Caregivers need to understand that this logic process is no longer a part of the survivor’s capabilities.

The notion of action and its consequences may no longer exist. A therapist explained the process to me. The logic and executive function are no longer possible in the injured brain. What does remain, however, is the emotional component of the process. The brain can still process emotions. Anger and frustration exist but the survivor cannot understand why.

So, how does the caregiver cope? Processes need to be broken into simple single steps. For example, the caregiver cannot rely on the survivor to get breakfast on their own. The caregiver needs to break the process into its components. Go to the cabinet, get a bowl, get the cereal, get a spoon, go to the refrigerator, get the milk, pour milk in the bowl…. etc., etc. Arguing about why something needs to be done is pointless here.

This can be especially frustrating when dealing with issues of personal hygiene. The embarrassment component remains while the inability to process multistep instructions can have very messy consequences.

The caregiver needs to realize that no amount of explaining is going to make the problem go away. The reality is that the caregiver needs to let go of the need to explain, accept the situation and incorporate the new reality into their daily routine. Making life as simple as possible for the survivor is a reasonable way to deal with the potential frustration. Explaining ‘why’ becomes pointless.

Remove logic from the situation and simply be with the survivor as they move very slowly through their day. This is especially difficult for caregivers but can help reduce stress for both the survivor and caregiver.

David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.

Copyright ©December 2017
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, December 3, 2017

Ten Tips for an Easier Holiday Season

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

The following was originally posted in the StrokeNet Newsletter 
December 1, 2017. 

by Deb Theriault

Enjoy Yourself!!

Yikes!! Another holiday season is here. How did this happen? 😊 Back in 2012, I wrote an article entitled “Suggestions for a Simpler Post-Stroke Holiday.” Here’s a “re-do” on some points I covered then, plus a few new ones that could make the difference between enjoying vs. dreading the holiday season.

1    “Re-imagine” your holiday.

 Feeling a bit “empty” about the holidays? List what you’d like
 your holiday to be, thencross off one item that means the least 
 to you. Repeat until you’ve winnowed the list down to 3 or 4 
 realistic “wishes.”
The remaining items are the ones that mean the most to you; make them a reality. Don’t feel guilty for letting go of meaningless obligations.

2    Take LOTS of breaks

It’s easy to overdo when handling holiday preparations. Suggestion: set a timer to remind you to take breaks, or have a relative or friend call you at pre-set times to remind you.

3    Take part in at least one special activity (besides attending 

   Some Ideas:

   ● Attend a tree lighting ceremony, holiday concert or play

   ● If ambulatory, take a winter nature walk, or walk in an urban
      setting that’s decked out for the holidays

● Enjoy holiday lights: drive, or walk, through your neighborhood or go to a holiday “light show” in your town; if nothing else, search on-line for holiday light displays. Sounds strange, but many sites post terrific light displays from around the country and, for that matter, around the world.

● - If you feel up to it:

● help hand out presents to disadvantaged kids, kids of military members deployed overseas or kids in the hospital over the holidays

● volunteer at a food bank, soup kitchen or local animal shelter, to give “regular” volunteers a break.

4    Decorate easier

● Choose a couple rooms (or foyer) and highlight the fireplace, door, special window, table, sideboard, or hutch, etc.

● Use “projection” lights to brighten the outside of your home vs. stringing traditional lights. Projection lights are getting better each year, and they create a lovely effect.

● Use LED candles; they’re looking more realistic every year.

● Use floral or fruit “picks” to decorate your tree, a wreath, or just about anything; the effect can look surprisingly professional. Reasonably-priced picks can be had at “dollar”, discount and craft stores.

● Display fresh greens, berries and pine cones, or various glass ornaments, in a large bowl

● Just place some large bows in high profile areas; again, “dollar” and discount stores are good sources.

5    Give it up

● Give away decorations you no longer use. It can feel uncomfortable giving up things that have been a part of your holidays over the years, but maybe it’s time to let others enjoy these decorations as much as you have.

● Give up attending meaningless holiday parties. If you aren’t excited about going, then skip it.

6    Simplify gift giving
● Give people gifts they can “experience”: tickets to a special event, concert, play, or the zoo, museum, movies, amusement parks and other attractions. Tickets for nearly all of these can be purchased on-line.

● Give gift cards to restaurants and eateries.

● Purchase the recipient a class or lessons for yoga, arts, crafts, a sport, meditation, dance, cooking, tai chi; the possibilities are endless. If the pickings are sparse in the recipient’s locale, consider giving self-enrichment classes that can be taken on-line.

● Give a “food subscription” (coffee, fruit, candy, treats, you name it) even if just for a couple months

● Make a donation (in their name) to a person’s favorite charity

● When in doubt, a well thought out gift card is fine

7    Pass the baton

There’s no shame in asking others to take over holiday gatherings, or to bring food to your event. My family’s been bringing a side dish or dessert to our Christmas Day celebration for some time now. Last year I even ordered the main dish from a local Whole Foods market. I didn’t regret it. What’s important is being together to enjoy the food.

In the next couple years, I’ll pass the baton for Christmas Day festivities to one of my daughters-in-law. It’ll be hard for me to give up this “sacred” tradition, but I’m sure I’ll get over it. 😊

Also, most families have special holiday foods. Pass these family recipes on to younger generations, by photocopying the recipes and putting them in a binder, OR by scanning the recipes and gathering them into a digital file on a “flash drive”.

8    Initiate a “no politics”/ no controversial talk policy at 

If your family / friends are mostly reasonable, but prone to get into political (or other “charged”) arguments, politely tell your guests in advance that it will be a “no political talk” / “no controversial talk” event (if you’re not hosting, ask the event’s host to announce this).

If anyone ignores your wishes, you (or the host) should calmly call a halt to the arguing, and remind everyone about the rule. Redirect the conversation by having each person tell about an interesting activity or thing they did during the past year.

Anyone who absolutely refuses to comply with the rule should be asked to leave. (If you’re at another person’s house and the obnoxious person won’t leave, then you may want to excuse yourself and go.)

Believe me, most of the other guests will be happy that these selfish individuals were asked to take a hike. Either way, whatever you do, stick to your guns, if your family / friends try to persuade you otherwise. You deserve much better than a rotten time and unhappy memories.

9    Meditate on the meaning of the season
Regularly take a few moments to re-charge your batteries by actualizing what the season is supposed to be about: family, friends, selflessness, sharing, kindness, giving and caring. No matter what, keep focused on these.

10    When all else fails……

If you become overwhelmed, remind yourself that this too shall pass (until next year).

Deb survived her third stroke in 2006. In addition to her work with the Stroke Network, Deb is Treasurer for the W. Pa. Division of the US Fencing Assoc., does community gardening in her neighborhood and is a professionally-trained artist who has been specializing in figure drawing for many years.
Copyright ©December 2017
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.