Retreat & Refresh Stroke Camp Blog: May 2020

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The Juggling Caregiver

By Claudia R Warner

I'm Juggling as Fast as I Can...

June has arrived and outdoor activity is calling---the lawn needs mowing, flowers should be planted, the vegetable garden is ready for care, and some plants must be divided or they will cease to grow. Meanwhile, the house still has to be cleaned, laundry done, plus cooking and other tasks are there to do no matter what the season. And, of course the biggest job of all---caregiving to my significant other.

I fear that I am guilty of neglecting him sometimes in my rush to get out in the sun and fresh air. Digging, planting, and spending time on the lawn tractor are all wonderful therapies for me. Therein lies the conflict—do I spend more time indoors with Wes, or go out and get a good dose of nature? Hopefully, doing so makes me a better caregiver, but I do feel guilty about leaving him in the house.

He hasn’t been enthusiastic about helping me with the outdoor work—even after I got a neat little bench for him to sit on while doing a bit of weeding. The special weeding tool (guaranteed to be easy to use while seated) didn’t entice him either. The anti-gravity reclining patio chair didn’t get used, even after I bribed him with a homemade frozen latte’ to drink while relaxing in the chair.

The only solution to this dilemma was to have him supervise me from the deck or patio. Thank goodness, he does this willingly. It is nice to have him there, giving me “pointers”. Who knows, perhaps one of these days he will decide to water the flowers or even tackle a weed or two!

Father’s Day is the 21st of this month and all Dads deserve to be recognized. There are so many gifts that stroke survivors can enjoy—guys do enjoy receiving flowers and plants. How about a book or a book on tape? Jigsaw puzzles can become a family activity and the interaction and attention given to your loved one helps their self-esteem. DVD’s are another gift that can involve others. Or take Dad for a leisurely ride in a park.

The best Father’s day gift for both of us was an engraved plastic name badge. Wes has severe aphasia and while he is very outgoing and doesn’t hesitate to visit with people, there were times when this really became stressful for me. We have always been active—going to events, movies, out for coffee or lunch, etc. I noticed that people would ask him a question and when he couldn’t respond, they treated him as if he had low mentality (which is definitely NOT the case here!).

This resulted in both of us being uncomfortable. Also, I was concerned about what would happen if we were shopping, for example, and I left him to go to the restroom and he either wandered off or someone tried to engage in conversation with him. WELL—the solution to this was so-o-o easy and inexpensive that I could hardly believe it! Engraved name badges!

I purchased them online from an office supply store! (I do a lot of shopping online as it is so easy.) I got 2 of them, so we would always be able to locate one. These come in many different sizes and colors. Plus, you customize them with your own words and logos. I selected 2” X 3” dark colored backgrounds with white lettering. Since he had been an avid chess player, a chess piece was a good logo for him. There are literally thousands of designs to choose from, or you can use your own logo. They arrived in less than a week and the cost was under $18 for each badge!

His badge reads:

Wes Warner

I understand you
but it is hard
For me to talk.

You can’t imagine what a difference this has made! People read the badge and realize that he comprehends what they are saying and treat him as a person. Many of them smile and comment that sometimes they have trouble finding the right words, too! This relaxes Wes and he is able to say more than when he is tense. It is surprising to me that so many people will stop, read the badge, and then engage Wes in a short conversation. This does both of us a world of good. Yep, this is a great gift for you, too. One less thing to juggle during your busy days!

Being a great father is like shaving. No matter how good you shaved today, you have to do it again tomorrow. ~Reed Markham
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The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Tuesday, May 26, 2020

Coming to Terms with Stroke

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Patience and Stroke Recovery
By David Wasielewski

Coming to Terms with Stroke

Years of personal and support group experience has led to my conclusion that patience is very necessary as each survivor comes to terms with their post-stroke lives. Along with determination these two virtues allow many survivors to travel the often long slow road to recovery. As I counsel new survivors I am careful to play down expectations for a swift and full recovery. One of the first questions we inevitably get from new support group members, “How long since your stroke?”

The answers from our folks in the group allow the newcomers to recalibrate expectations about their own recovery. Answers to their question allow them to see the reality of how long a recovery might take. Several aphasic members are five and even ten years from their event and still making progress. Some with physical deficits are a few years post stroke with permanent, lingering issues: hemiplegia, muscle spasticity, etc. These realizations can be a bit of a shock to the new survivors but are a necessary part of the recovery process.

One of the things we hope for is that these new folks realize that recovery often takes a long time, extended effort and tons of patience. The second realization we hope for is that these same folks realize that although a quick full recovery may not happen there is still reason to push forward. As each individual comes to experience the realities of their post stroke existence they will also begin see a value to managing their lives with the physical and mental challenges that remain.

A survivor may not be able to do things as quickly as they used to – but often these things still get done. ‘Patience.”. Typing one handed is significantly slower that two handed as I have learned, but it doesn’t stop me from writing these articles. “Patience”. Taking a shower takes a while longer, but planning additional time lets me complete the task and move on with my day. ‘patience.” Communicating takes more time for those with Aphasia, but that doesn’t mean they don’t have something to say. It just takes longer. “Patience.”

Patience is also a necessary virtue in caregivers. Caregiver expectations need to be realistic as they accompany their survivors on this journey to recovery. Meeting other survivors and caregivers gives these folks realistic expectations about the level of recovery to be achieved and the time it might take to get there. Watching the interaction of folks who have been there and survived relationships intact, hopefully demonstrates that the long difficult road is worthwhile and the patience that journey requires is worth the effort.

Adjusting to a new post-stroke life requires patience. Once expectations become realistic for the caregiver and survivor much of the frustration in the journey can be relieved. Patience can replace frustration. The caregiver trusts that the survivor is putting forth her best effort. The survivor trusts that the caregiver understands the time it will take to see results. Jill Bolte Taylor, a neurologist who documented her post stroke recovery has a relevant quote I appreciate. “Just because you can’t see me trying, doesn’t mean I’m not trying.” The survivor rightly asks for patience rom the caregiver.

Are there ways to accelerate this long, difficult journey? My experience tells me no. After the long journey thru recovery the survivor slowly comes to accept their new reality. Along with that, the survivor needs often develop new ways of doing things that were once second nature. This often means that accomplishing common tasks takes more time and patience.

In our younger lives learning new tasks often makes life faster and easier. Life is accelerated. This takes a while. We often get 18-20 years to make these pleasant adjustments. A stroke survivor, on the other hand, is tasked with adjusting to a slower, more challenging existence. It seems unrealistic to expect these types of adjustments to happen quickly. With time, these adjustments happen, just more slowly. It takes patience.

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.

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, May 17, 2020

Live By Faith, Not Superstition

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This week's blog is submitted by Phil Bell, retired pastor, University Baptist Church. He is a stroke survivor, and occasionally writes an article for the local newspaper. He permits us to post them, also. He loves to write, according to his wife, Nancy. I believe writing is probably very good therapy for him.
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Street & Steeple for May 1st, 2020

By Phil Bell, retired, pastor University Baptist Church
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“Live By Faith, Not Superstition”

I’ll bet not many, if any of you started today by saying, “rabbit, rabbit!” I once was told that if I, the first day of the month, said that before I said anything else would have good luck for the entire month! I do not do that because I am not superstitious nor do I believe there is such a thing as luck! Any and everything which happens does so by either God’s directive or permissive will!

Eight years ago when I had the massive stroke which left me, among other things, paralyzed on my body’s entire left side, I didn’t believe God had caused it, but that it was a result of Adam’s sin which resulted in mankind’s bodies wearing out, and sickness. One thing of which I’m sure is that God could have prevented it had He chosen to do so! The holy scriptures tell us that God is in control of the entire universe. I may never know why He chose not to stop my stroke, but He certainly does not owe me an explanation!

As I wrote, I do not believe in superstitions. Thus, I do not quake if a black cat crosses in front of me. In fact, I dislike all cats! I don’t look for four leaf clovers nor fear breaking a mirror and would roll under a ladder if given the opportunity and a reason for doing so.

Some people would call one thing I do a superstition. I am an avid Cubs and Bears fan! When I’m watching either of them on TV and they are behind, I will turn to watch something else awhile because when I turn back to the game, my team will be ahead! As I wrote, some would call this a superstition, but they are wrong. This is fact! So, what’s the difference between superstition and faith?

Superstition is believing that something you do or which happens to you will affect your future for good or bad. Of course, one’s actions affect his or her future, but not by some mysterious way.

Faith is the absolute belief in something not experienced by one’s senses nor which can be proven empirically! As Hebrews 11:1 puts it, “Now faith is the assurance of things hoped for, the conviction of things not seen. ”While superstition has no place in one’s life, certainly, faith does. Faith is the only way we are forgiven by God and become His child! I put faith into practice every single day. I trust my Heavenly Father in everything I do!

As I wrote in my book, “An Actual Step Of Faith,” “ when I was receiving physical therapy and walking with a hemiwalker, I would swing my left leg forward using my abs in a compensatory motion, then, transfer my weight to my left leg, even though I couldn’t feel it on the floor.” Yet, I moved my right leg forward. I did so by faith that my left leg would support me, which it always did!

That is a verification that faith, though not indicated by our senses, can be relied upon! My point is don’t be superstitious, but instead be a person of faith!

-Phil Bell, retired, pastor, University Baptist Church

Sunday, May 10, 2020

Know Yourself!

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Are you a stroke survivor or a caregiver? Do you know yourself? This article by Moses Cherrington, originally posted in a Stroke Net newsletter, could be of significant help.
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Know Yourself!

When we have a stroke to whatever level, our life is transformed forever.

We cannot do what we used to do, our emotional state is different, our image is now different, fewer friends visit, our social skills become constricted or restricted; each day having its own demands. we either meet those demands or as I once did, sat in a chair and looked out the window for three months.

The view was good. As I let the day go by I would reflect, and reflect, and reflect. What can I do now? I am an ex-realtor, ex-musician, and ex-salesperson who relied upon personality and communication skills to profit financially. I must get a Doctor's certificate to receive Government support and attend interviews at the Government offices to show if I am ready for work.

I reached the conclusion that if I did not know myself and my condition. I was a prisoner of my transformed life.

Know Yourself
How I have come to know myself?

What is my Condition?
The literature from the hospital gave me information in a very clinical, sterile way. I could not understand it. Medical jargon was used. The dietician interviewed me to curb my eating. I do not remember anything that we discussed as it was two weeks into my rehabilitation. My memory was non-existent.

Why is it that Non Stroke Survivors think they understand our condition?
Yes, a heartfelt sigh goes out when we mention that we have suffered a stroke. In fact tonight when a caller rang for a donation. I told them that the family was getting back on its feet as I had suffered a stroke. The caller empathized with me and apologized for disturbing me and quickly hung up apologetically.

What is our condition?
We have changed and we need to understand our changed condition. Medically we must take a variety of pills which, WE HOPE will relieve our condition, whether it is for high blood pressure, high cholesterol, or the like.

1. Know your medication and side effects
Why? This is so important and let me tell you why.

The medication to lower my blood pressure had the side effect of creating more uric acid within my blood, resulting in uric acid accumulating in my joints and causing gout. For those who don’t know the pain of gout: it is like glass shards within every joint.

The pain caused by the gout in my arms and knees and feet got so bad that I had to hire a wheel chair to get from the lounge to the toilet.

Upon changing doctors, my new doctor had pointed out the effects of medication that I had been given and he changed my medication. It was from then on I decided to research the side effects of medication using the internet.

I was prescribed medication for my moods. Yes our moods do change, but the side effect of this medication was impotence.

2. Fatigue
How fatigued do you get? How do you measure how fatigued you get? What exercises do you do to get tired? I know we get fatigued, but can we get fatigued in a good way? What gyms do you have in your area? I discovered one that catered to people with disabilities and I enjoyed attending. There was no cost and it was sponsored by a local sport’s organisation that had put together a disability committee to both seek funding as well as to organise a venue.

The physio in charge at the gym for the disabled knew about fatigue and shared some strategies to help me get fitter. She knew the limitations of a stroke sufferer and our group played sport with other disabled people. I could empathise with them, especially those in a wheel chair who were more severely disabled than I.

3. Food intake
How is your food intake? Are you overweight? If you lost 5, 10, 15 lbs would it make a difference?

I have just lost 13 lbs and I can now fit into my trousers. So what, you may ask? Down here in New Zealand there is a little button on the inside of our trousers that my stroke hand must do up for me to wear my trousers. Some days I give up, other days I persevere.

4. Build our Networks
No one tells us but, we must rely upon members of the stroke family to acquaint us with this important information because this information is vital to us to know ourselves. Build a network of people who know about areas you need to know about.

To summarise

Know Yourself

1. What medication are you taking and are there any side effects to your medication?

2. What level of fatigue are you at? Have you devised a plan to measure your fatigue? You can enjoy your sleep better by exercising your body to combat your fatigue. Are there any exercise programs for the disabled in your area? If not, initiate one by contacting your local disability club or stroke club and ask, or start one yourself. Research the internet.

3. Have you examined your food intake? I am not advocating going on a diet, but seek a weight management program to assist you to relieve yourself of any excess pounds.

I used and would recommend vitamin supplements. .

4. Think about building a network of people who are sound in knowledge in areas you desire to know. Here I would recommend Coursera.org which runs courses online for you to study. I have been studying law, nutrition, learning how to learn and yes, even music. All these courses are from prestigious universities in both the United States and England. The beauty of these courses is that they are FREE. Please look at the courses, there might be something you like. All are online and free.

Many thanks for your kind words for all who emailed me. Your lives and testimonies enrich my heart and may my words enrich both your hearts and your lives.

Editor’s Note: The recommendations in this article are made by the writer. The Stroke Network, United Stroke Alliance, and Retreat & Refresh Stroke Camp do not endorse products.
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The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Friday, May 1, 2020

Stroke Month Presentation by Marylee

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