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Linnie

Stroke Foundations: Need For Pamphlets

17 posts in this topic

Hi, we've all seen everywhere (doctor's offices, newspapers, television, etc.) how to recognize when a person is having a stroke.  Same abundance of info on how to prevent having a stroke.

 

I've been trying for years, to no avail, to have the Canadian (Heart and) Stroke Foundation provide the same amount of info to these same media re "what stroke survivors need everyone to know".

 

Because of all the posts on this site re the problems stroke survivors are facing when family, friends, and sometimes even doctors, don't understand our fatigue, our sensory overloads, our cognitive or physical impairments, it seems obvious that non-strokers are not using the internet to learn about what we need them to understand.

 

If anyone else contacted the Stroke Foundation in your country for the same purpose, was it effective?    :feeling-down-and-blue:

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For the most part, just about every website on the Internet that is about stroke is primarily interested in just repeating the standard information about stroke.  That is fine for the majority of people but, in my opinion, does not come close to actually explaining an in-depth look at it.  That is why I decided to create my own websites that have information meaningful to anybody wanting to know what stroke is really about.  Check it out! 

quick links, The Stroke Network websites, stroke education, deficits.png

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Whoops!   :sad:  Sorry Steve, I had to change the tag I initially put in (re deficits).   It's so great that this new format allows us to change the title as well as the tags, love it!!

 

Your websites are great for stroke survivors and caregivers, but I intended to address the numerous posts on StrokeNet re non-strokers having no understanding of the problems stroke survivors are facing....the emotional upheaval and their perception of how others think of them, etc.  Survivors like you and I who had strokes so many years ago are long past this.  However, it really saddens me to read the posts by recent survivors who are commenting on problems with family, friends, etc., expecting a speedy recovery or possibly no recovery.

 

I think (could be wrong, been that before, lol) that it would be helpful if pamphlets were available in doctor's waiting rooms or at pharmacies with information along the same line as Scott's topic "10 things I wish people knew" or the websites such as the one below (substituting the words "Brain Injury" with "Stroke" because in my opinion many people don't comprehend that a stroke causes brain injury).  This type of leaflet might catch the eye of family, friends, co-workers, neighbors, etc. of stroke survivors; and I honestly feel that the written word has much more power than the spoken word.

 

This StrokeNet website would still be very necessary for survivors to not feel alone, to ask for advice, to vent, etc., because they may feel like a burden to their caregiver.  

 

Just a thought, but I want to continue pursuing it (there's a reason that I'm referred to as being tenacious!)

Lost & Found: What Brain Injury Survivors to Want You to Know

 

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope."

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I have to agree with everything you are saying.  Cool list!  :wink:It's unfortunate that people don't care about stroke until it happens to them.  :angry:

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I remember this list because it was one that my speech therapist at the time gave me and suggested that I share it with some of the people around me so they knew what to expect. I sent it to my co-workers before I returned and several said it really made them think about what I might be going through.

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The stroke Foundation here in Australia has some great resources that are handed out to Stroke survivors and their families usually during their hospital stay. They also have a very good web site for people affected by stroke (carer,suvivor, family, etc.) https://enableme.org.au/, Also a regular newsletter etc. But Lin even if this stuff was available as a pamphlet at the doctors office only people already interested are going to look at or retain the information.  The F.A.S.T. campaign works because part of the message is "it can happen to anyone/anywhere."

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Best post in a long time, Lin! 2ik428y.jpg

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Thank you all for your comments.

 

Steve:  So true that until we've had a stroke, we know nothing about how it affects the brain.  Survivors do seek more information, and find very helpful websites, such as StrokeNet where they can learn a great deal and share advice with other survivors.

 

Scott:  I'm glad that you were provided with this information to give to others.  (Although I think I may be having a relapse right now, lol.  I can understand the humor in the first part of the fork quote, but I have no idea what kind of special fork you give to children.....duh!)  And if you tell me I'm over-thinking, you're absolutely right!!  :oh:

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My post was very long so thought I should break it up.....

 

14 hours ago, heathber said:

But Lin even if this stuff was available as a pamphlet at the doctors office only people already interested are going to look at or retain the information.  The F.A.S.T. campaign works because part of the message is "it can happen to anyone/anywhere."

 

Heather, I'm thinking of all the posts we still see re families or friends not understanding why a survivor is tired all the time, why they don't like to go to social events, why it's taking them so long to be back to "normal", etc.  To me, that indicates that the people who are considered valuable in some survivors' lives aren't going online to understand how to interact with them in a positive manner.

 

If these people (spouses, children, friends, co-workers, neighbors, cousins, whatever), are in a doctor's waiting room and they see a pamphlet such as this, I think it would get their attention.  After reading it, I would hope that they would understand that how they communicate with the stroke survivor in their life is a very important aspect of the recovery process.  It might also generate a desire to go online for even more info.  (Always hoping!)  :bubble:

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Lin,

 

I have a set of forks in the size I use, I believe they are called salad forks but I was never formally trained in the dark art of silverware. I just know enough to not stick myself in the eye.:rflol:

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Benni:  You're the most recent survivor in this thread, not quite a full year yet.  Before you were released from the hospital, were you and your husband provided any written material concerning how the stroke might affect your life, your emotions, etc.? 

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Scott, too funny!!  :lol:   

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Lin,

You present an interesting idea. I don't know how strokenet is structured but could Steve or someone apply for a grant to fund such a program? Only he can answer that. It actually sounds like a rather large project depending on the scope of where you would want to put them and which doctors would be willing to display them.

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Good question, Scott.  

I've wondered if Steve gets a grant for the upkeep of this very necessary website.

In general, I'd like to see this type of pamphlet in the waiting rooms of Primary Care Physicians; many more people would have appointments with them rather than with Specialists.

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Our website is a 501(c)3 non-profit organization.  We depend entirely on donations and an occasional fundraiser to pay all of our expenses (over $4000/year).  We are lucky that our vendors give us a non-profit discount, too.  Everything costs something.  You might find something that is free but then it's scattered with advertisements.  If you want a professional looking website you have to pay! 

 

I used to be an extremely active advocate for stroke.  I'm not going to spoil this endeavor with negative comments but I want to tell you it really takes a commitment.  About 15 - 20 years ago, I made a 3-page pamphlet with my Publisher software.  I had it printed on nice thick paper so it looked and felt professional.  If you use just regular paper that your printer uses, the pamphlets are flimsy and feel cheap.  Presentation is everything!  Imagine you are in a doctor's office and pick up a flimsy pamphlet you probably would not take the content too serious.  You also need to show that the content is backed by a credible source of information.  You cannot not have a source and you cannot say that your source is Joe Schmoe.  So, my source of funds was The Stroke Network.  The Stroke Network paid for everything and it looked professional for the pamphlets to say that they were made by an organization with a business name, website, physical address and phone number. 

 

BTW, I did extensive research on getting a grant.  What a pain in the butt!  You cannot just say that you need money for something worthwhile.  You have to search for a philanthropist who is willing to give you money.  The pamphlet project could be completely paid for less than $500.  The philanthropist is looking for worthwhile projects that need hundreds of thousands of dollars.  Philanthropists will only support specific causes and I mean exact!  Oh, if you ever meet the preliminary criteria, you must show that you have the right staff and capabilities to effectively manage and track the project.  Sheesh!  Forget about it! 

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Even where there are small grants available, the admin required chews up so much resources the grant actually has a negative affect. Been there done that.  The Stroke Foundation here tries but the country is so big (in area if not in people) that getting enough coverage for a campaign to have country wide effect is nearly impossible, which is why they concentrate on the hospital side rather than the GPs

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Hi again,

 

Steve, you didn't used to be an active advocate for stroke survivors; you still are!  And my endeavor is not to organize the printing of pamphlets (I'm hopeful about a lot of things, but would be downright hopeless with attempting that.)  What I want is to have the Stroke Foundations see the need for them.  They should be aware of and concerned about stroke survivors' relationships with family and friends being jeopardized because of non-strokers' lack of information.

 

After reading the last 2 posts, I thought "Darn, that's a lot of water thrown on my fire."  But then I had another thought (2 thoughts in such a little time, lol).  But it gave me a new match to re-light the fire: I googled the Canadian Heart and Stroke Foundation to find out what pamphlets and posters they print now.  https://www.heartandstroke.ca/what-we-do/publications

and found:

 

What we do

Publications

 

I scrolled through these for the stroke-related ones and think it's time for them to get their head out of the sand.  (I'm not good at filtering what I say; but I know I'd have to rephrase that!)  I did some copy and paste to summarize what I found:

 

- A one-page "Signs of Stroke":   I have seen a number of StrokeNet members state in their posts that they knew something was wrong, but had to make 2 or 3 trips to the hospital before doctors finally diagnosed them as having a stroke rather than a migraine headache.  Not everyone that has a stroke has the standard signs, so perhaps this should be expanded.

 

- A 20-page brochure on identifying and controlling your risk factors: Definitely important, but again, a number of members (including me) who didn't have any of the risk factors (or if they had a hole in the heart, they weren't aware of it).  I've read posts by some members who stated their doctors were not able to determine what caused their stroke.

 

- A 32-page brochure on managing the stress in your life, because stress in a risk factor. Wonder how many stroke survivors feel stressed because of fear of being misdiagnosed again, non-strokers being impatient with their difficulty speaking, financial stress, etc.

 

Yeah, I know I'm getting mean!!  :no:

 

- A 118-page booklet (? I'd call that a book)  Your Stroke Journey: A Guide for People Living with Stroke.  I have no idea what percentage of survivors have cognitive impairments, but for those of us who do it could be a year or two post-stroke before we could even attempt to read their Book-let.

 

Ok, I've finished this long rant!  All of this material can be downloaded, but you can also request a copy of it.  All of them have the note *available in print.  I'm definitely going to continue to contact the Heart and Stroke Foundation.  If they have the funds to print the above-mentioned as well as other brochures, it wouldn't bust their budget to print pamphlets containing the information that I copied and pasted in my second post regarding this topic.

 

Time for a laugh: I'm tired now so I'm going to wait a few days before I download their 19-page pocket guide for health care providers.  There's a lot of information in those 19 pages!!

Stroke assessment and prevention pocket guide (19pg) 

*for healthcare providers only

This pocket guide contains information about stroke symptoms, functions of the brain, cranial nerves, Canadian Neurological Scale and National Institute of Health Stroke Scale. It also contains information about risk for recurrent stroke, and information about how to develop an individualized management plan.

 

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