Sunday, November 22, 2015

15 Things a Caregiver Should Know

The following was taken from a status update that showed up on my personal Face Book page. I thought this was very appropriate advice to pass along to the readers of this blog.

1. It’s better to find out than miss out. Be aware of the medications that have been prescribed to your loved one and their side effects. Ask if your home should be modified to meet the specific needs of the stroke survivor. Ask a doctor, nurse or therapist to clarify any unanswered questions or to provide written information that explains what occurs after the stroke and during recovery or rehabilitation. 

2. Reduce risks, or stroke may strike again. Survivors who have had one stroke are at high risk of having another one if the treatment recommendations are not followed. Make sure your loved one eats a healthy diet, exercises (taking walks is great exercise), takes medications as prescribed, and has regular visits with their physician to help prevent a second stroke. 

3. Many factors influence recovery. Recovery depends on many different factors: where in the brain the stroke occurred, how much of the brain was affected, the patient’s motivation, caregiver support, the quantity and quality of rehabilitation, and how healthy the survivor was before the stroke. Because every stroke and stroke survivor is unique, avoid comparisons. 

4. Gains can happen quickly or over time. The most rapid recovery usually occurs during the first three to four months after a stroke, but some stroke survivors continue to recover well into the first and second year post-stroke. 

Editor's note: I will take exception to the last part of this item #4. Retreat & Refresh Stroke Camp's experience with over 130 camps spanning 11 years and the several thousand survivors we have come in contact with during that time has shown that while the most rapid recovery does occur during the first three to four months we see continued improvement for many years and even over a lifetime. Stroke survivors should never give up, never quit striving to improve. Soon I will be posting an article that addresses this very topic.

5. Some signs point to physical therapy. Caregivers should consider seeking assistance from a physical or occupational therapist if their loved one has any of these complaints: dizziness; imbalance that results in falls, difficulty walking or moving around in daily life; inability to walk six minutes without stopping to rest; inability to do things that he/she enjoys like recreational activities or outings with family or increased need for help to engage in daily activities. 

6. Don’t ignore falls. Falls after stroke are common. If a fall is serious and results in severe pain, bruising or bleeding, go the Emergency Department for treatment. If a loved one experiences minor falls (with no injury) that occur more than two times within six months, see your physician or the physical therapist for treatment. 

7. Measuring progress matters. How much acute rehabilitation therapy your loved one receives depends partly on his/her rate of improvement. Stroke survivors on an acute rehabilitation unit are expected to make measurable functional gains every week as measured by the Functional Independence Measure Score (FIMS). Functional improvements include activities of daily living skills, mobility skills and communication skills. The typical rehabilitation expectation is improving 1 to 2 FIM points per day. 

8. A change in abilities can trigger a change in services. Medicare coverage for rehabilitation therapies may be available if your loved one’s physical function has changed. It there appears to be improvement or a decline in motor skills, speech or self-care since the last time the patient was in therapy, he/she may be eligible for more services. 

9. Monitor changes in attitude and behavior. Evaluate whether your loved one is showing signs of emotional lability (when a person has difficulty controlling their emotions). Consult a physician to develop a plan of action. 

10. Stop depression before it hinders recovery. Post-stroke depression is common, with as many as 30–50 percent of stroke survivors developing depression in the early or later phases post stroke. Post-stroke depression can significantly affect your loved one’s recovery and rehabilitation. Consult a physician to develop a plan of action. 

11. Seek out support. Community resources, such as stroke survivor and caregiver support groups, are available for you and your loved one. Stay in touch with a case manager, social worker or discharge planner who can help you find resources in your community. 

12. Learn the ins and outs of insurance coverage. Be sure to consult with your loved-one’s doctor, case manager or social worker to find how much and how long insurance will pay for rehabilitation services. Rehabilitation services can vary substantially from one case to another. Clarify what medical and rehabilitation services are available for hospital and outpatient care. Determine the length of coverage provided from your insurance (private or government supported) and what out-of-pocket expenses you can expect. 

13. Know when to enlist help. If rehabilitation services are denied due to lack of “medical necessity,” ask your loved one’s physician to intervene on his or her behalf. Ask the physician to provide records to the insurance carrier and, if needed, follow up yourself by calling the insurance company. 

14.  Know your rights. You have rights to access your loved-one’s medical and rehabilitation records. You are entitled to copies of the medical records, including written notes and brain imaging films. 

15. Take care of you. Take a break from caregiving by asking another family member, friend or neighbor to help while you take time for yourself. Keep balance in your life by eating right, exercising or walking daily, and getting adequate rest.

Sunday, November 15, 2015

I Am A Brain Scientist/Stroke Survivor

I got this tip from Clay Nichols, Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software that is used for speech recovery after a stroke. 

The following is a re-post from the Ted Talk web site:  I must warn you before you click on the link at the bottom of this page the video of Jill Bolte Taylor's talk shows her handling an actual human brain. However, I think you will be captivated by her personal experience. 

Brain researcher Jill Bolte Taylor studied her own stroke as it happened — and has become a powerful voice for brain recovery.

Why you should listen

One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the "Singin' Scientist."
What others say

“How many brain scientists have been able to study the brain from the inside out? I've gotten as much out of this experience of losing my left mind as I have in my entire academic career.” — Jill Bolte Taylor

See Jill Bolte Taylor’s TED talk here:


Sunday, November 1, 2015

Sleeping In Tents? No! Eating Hot Dogs? NO!!!

Blogger Note: due to circumstances this post is running for two weeks. A new article will be posted by November 15th.

Do you think you know what Retreat & Refresh Stroke Camp is all about? Guess again! Let me show you our Ohio camp as an example. And we had over fifty-five campers.

 Okay, this last one might have been the result of a camper eagerly anticipating approaching Halloween. (Yeah, kinda creeped me out, too).

And this is only a few hours of what we do at a full weekend of camp.

Monday, October 26, 2015

"We're Survivors, NOT Victims"

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

“We’re survivors, NOT victims.”

Our society needs to take the word “victim” out of its vocabulary when it comes to stroke. 

If you've had a stroke, you are a survivor, NOT a victim. When you think of yourself as a victim, that hurts your recovery. It distracts you from focusing on the present and the future, where all your energy needs to directed. 

If you're a caregiver, your loved one is a survivor, NOT a victim. When you think of them as a victim, that affects how you aid them in their recovery. It distracts you from focusing on the present and the future, where all your energy needs to directed. (Yes, that's a repeat of the above!)

I admit that I blow a gasket whenever I see "victim" in a news headline about stroke. I cringe when I hear medical professionals refer to survivors as victims, and when I can gently correct them, I do so with a smile. When I hear a caregiver refer to their loved one as a victim, I follow up with how "your SURVIVOR …" And when I hear a survivor refer to themselves as a victim, I boldly say, "You are a SURVIVOR!"

That statement, "We're survivors, NOT victims," was expressed during one of the first survivor discussion groups I participated in at Retreat & Refresh Stroke Camp in 2008. And I've never forgotten it.

And I never, never forget it when I volunteer at a Stroke Camp because I get to witness survival at its finest. I am exposed to so much life and the real purpose of living that I have been forever transformed by it. Stroke Camp leads the way when it comes to the true meaning of life with an abundance of love, connections, laughter, personal expression, creativity, the right kind of tears, and the hugs, oh yes, the hugs. 

Here are just a tiny, tiny sampling of the faces of survivors who have surrounded me with so much life and love this year … Not enough room to share them all!  :-)




Sunday, October 18, 2015

Strike Out Stroke Survivors


Teaching Stroke Awareness is Strike Out Stroke's Mission and celebrating stroke survivors tenacity and determination is a driving force in educating the public about this devastating disease.

Putting a human face on stroke is a goal of SOS. Who are the people afflicted by Stroke and what does it take to recover? How does stroke impact a survivor and their family? 
What kind of outcomes do stroke survivors face for their lives? 

Strike Out Stroke Events select outstanding candidates to represent the gender, age and ethnic diversity of stroke survivors as well as the multiplicity of outcomes and to represent the drive that moves stroke victims from personal adversity to social advocacy.

The life stories are inspirational, touching baseball fans to rally to advocate in their own lives and social circles.

Survivors ....walk, limp and roll onto the field proud of their recovered abilities....they demonstrate that young people and children, black, brown, white and yellow have strokes ....and with hard work the human spirit will recover, revive, recreate a new spirit in a stroke survivor! They all deserve to be uplifted and CELEBRATED!



Tuesday, October 13, 2015

RRSC October/November 2015 Newsletter

The following is from our camp's October/November Newsletter.In this newsletter we will hear from Larry Schaer, Associate Director, who is sitting in the "directors" chair this issue.
by Larry Schaer
Today I want to share an observation with all of you. As the Associate Director of Retreat & Refresh Stroke Camp I have the privilege of meeting hundreds of people across the country through stroke camps and Strike Out Stroke events. It is truly amazing to see people taking the initiative to educate and support stroke survivors in their respective communities. Little did we know the decision to take stroke camp "on the road" would have such an impact in communities across the country.

In 2007, we made a decision to create a national network of stroke camps. Today we see the fruit of that decision where survivors, caregivers, family members, sponsors and volunteers are making a positive difference in their own communities. It is not unusual to see fundraisers, 5th grade education classes, Strike Out Stroke events across the country. For example, a couple of camp volunteers have planned an event, dancing with the docs, to raise funds for multiple camps in the Phoenix area. A Denver stroke survivor created his own non-profit organization tt,,at provides cycling and snowboarding opportunities for stroke survivors {see related article in this newsletter). A California stroke survivor planned and conducted her own Strike Out Stroke in her community.

The common denominator in these stories is the fact that all of them have participated in one of our stroke camps. It is our belief there are many stories where ordinary people are making miracles that are improving the quality of life in their communities. If you have a story we would like to hear it. If you'd like to send your story, just forward it to us at Want to call us, the number is 309-688-5450.
Survivor Spotlight

It happened the morning of August 2, 1983, twenty-four days before my 30th birthday and I was living the American dream. I had a beautiful wife; we had our first daughter, born in July. We had a house, cars, money in savings and I was in the process of starting my own business. Life was good, but on that day while spending the afternoon with my in-laws, I had my first stroke. My future was to include seven strokes within three and a half years.

By my fifth stroke my doctor told me to go visit with a psychologist to deal with my own death. He did not know what was causing me to have these cerebral accidents. The test following my sixth stroke led to a diagnoses of my disease, Granulomatous Angiitis known now as Isolated Angiitis of the Central Nervous System.

It was between my fifth and sixth strokes that a close friend of mine invited me to go skiing. We had ski raced in our high school years, and after, until my first stroke. This day of skiing was the first time since this whole ordeal had begun, no doctors, no appointments, no hospital stays, nothing but skiing. This would have a profound effect on my future, right up to today.

After my seventh stroke, there were problems and challenges in the ER and I was feeling down and sorry for myself. The morning of the third day I thought to myself  "this is not doing me a damn a bit of good." I went to the speech rehab center and held up my note "teach me how to speak." My rehab button was on again!

In the fall of 1987 I saw an ad on the television for instructors to teach the disabled how to ski. I decided to became an instructor and have taught for 21 years. The discovery that there was no formal instruction for stroke survivors to learn to ski, led to the formation of the Snow Strokers of Colorado. When a few of us stroke survivors and their caregivers started riding our bicycles at the Aurora Reservoir, the Spoke Strokers were formed.
The whole purpose of the Snow Strokers of Colorado and the Spoke Strokers is to integrate the mental and physical rehabilitation in an outdoor environment for stroke survivors. There is something therapeutic about being outdoors in the fresh air, with blue sky, and sunshine. That is why we are here - to help all stroke survivors. 

Sunday, October 4, 2015

So much beauty … inside and out

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

I'm smiling all the time at the Stroke Camps I attend, but a survivor this year — who was attending her first camp — put an extra big smile on my face when she asked if I'd take her photo after she had finished a session with the Mary Kay ladies who had volunteered their services at this particular camp.

Of course!

High on Stroke Camp's priority list is a pampering experience for our caregivers and survivors because everyone deserves to be pampered, especially our campers! Since I started volunteering in 2008, I've witnessed some wonderful moments … from survivors who haven't put on make-up since their stroke because they had to focus on more important things like surviving everyday life with the use of only one hand, usually their non-dominant one … to caregivers who also have more important challenges in getting everyone through everyday life in a post-stroke world.

This post isn't about women and make-up. (We've also had quite a few men who enjoyed their first-ever facial!) It's about taking a moment to focus on yourself, which everyone deserves, and to help YOU feel good about YOURSELF. We are so privileged to offer this opportunity at Stroke Camp.

That isn't being selfish or greedy with your time. It's all the human desire to refresh the image we see of ourselves in the mirror. Many stroke survivors and caregivers are either so rushed or so slowed by the effects of stroke that they forget to "stop and smell the roses," or give themselves a chance to be simply human.

It isn't vanity; it's simply feeling good about themselves, because that is one of best mental health services that can ever be offered. When we feel good about ourselves on the outside, all the vital organs that keep us going on the inside are being nourished and given a much-needed break from the stress that works overtime to break us down.

Yes, there is so much beauty at Stroke Camp … inside and out …

Sunday, September 27, 2015

Famous Stroke Survivors

The following is reproduced from the Strokewise website hosted by 
David Valiulis: 

I encourage you to visit his site as it contains a large quantity of interesting information.

Famous Stroke Survivors

Art Linkletter

Bette Davis

Bob Barker

Charles Schulz

Della Reese
Dick Clark

Ed Koch

Eli Wallach

Esther Williams

Evel Knievel

Frankie Muniz Reveals He Suffered a
Frankie Muniz

Gerald Ford

Helen Keller

Hugh Hefner

Isaac Hayes

James Cagney

James Garner

Joseph P. Kennedy, Sr.

Kirk Douglas

Larry Flynt

Margaret Thatcher

Mark Kirk
(an article about his stroke)

Mark McEwen
(an interview with him about his stroke)

Mary Kay Ash

Patricia Neal

Pope Benedict XVI

Ray Bradbury
Sharon Stone

Ted Williams
Tim Curry

Typhoid Mary

Jill Bolte Taylor (her famous TED talk)