An Open Note to the Young Folk on StrokeNet


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***NOTE This post was originally made in Young Stroke Survivor Support, but was relocated here, as I am over 39. So I hope the Younger folks *do* see it....Of course I'll keep posting in the other Forums, my comment below about the only post was for YSSS Forum***

 

 

Hi Folks....

 

Every once in a while, the Mgmt. at StrokeNet comes up with a *GREAT* idea....

 

I think the Young Survivor Stroke Support is one of those....

 

I'm 60, though a number of lady friends will dispute that.....<G>...!

 

So I don't know if this will get through...

 

You younger folks (39 and Younger) are operating in a World and social structure vastly different from us dinosaurs...

 

My Stroke was when I was about to be 58....Hell, I thought that was young....

 

Just to let you know, us old dinos are out here, too....

 

One of the strengths of StrokeNet, and I think I can fairly say, that's against *anything* on the Net, is the wealth of experience inherent here, amongst its members....

 

If, at any time, you want anyone from the older crowd to chime in, comment, or answer questions, do not hesitate to to post in one of the other Forums....

 

We are all united, Survivors and Caregivers alike, Young or Old, by the advent of Stroke....

 

The strength of StrokeNet lies in its members....Their experiences....Their understanding of other Stroker's situations...

 

I maintain, you will not find it anywhere else on the Net...Well, OK the Web, if you will...(they are different)....

 

Now....I know it's kinda nastyass if you are a younger Stroker....I can't even imagine what a Stroke at 19, 29, or 39 would have done to my Head...

 

On the other hand, you have Youth and recoverability.....Precious assets....

 

Please feel free to comment, ask questions, or vent in the other Forums....

 

One thing you'll find, is that we all have that commonality....

 

This probably the only post you will see from me in here....If you want to yak personally, feel free to PM me....Or, most anyone you meet on the Site....

 

We're all here for the same reason, but I know the Younger folks have a whackier World to deal with than I had...

 

Care, and I wish you all well in your journey...

 

PS....StrokeNet is on Facebook, too...

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Gary:

 

That's nice post. I stroked at age 34 & was so at lost in the begining to find younger crowd in rehab and elsewhere who can understand my losses. But at Strokenet even with people quite older than me in the begining I learnt great deal, and was able to handle my stroke issues gracefully. Though I am 40 now I still think I still understand what younger folks in their 30s go through while dealing with stroke related changes in their life. Its amazing that this site exists and we can all share our ups and downs of life's this curve ball. as we all know stroke does not discrimate age and so is wisdom you gain through adversity in life. Hope we all learn and support each other at all ages.

 

Asha

 

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Gary,

 

Great post! In a couple of months it will time to celebrate my 2 yr anniversary when stroke hit my life. I appreciate being able to log in and have the support & information that StrokeNet provides everyone. We get to help each other along the way of recovery.

 

 

hostlinda

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couldn't agree more.

 

 

 

There are some instances that 'we' post that are relevant to what happening now , as a younger person. I guess the feeling, at least for me is, I guess I wanted a point of view from someone who I thought could relate to better. I understand that people, which have had strokes in the past, were the same age as I am now . I can learn from all of what is said from all ages.

I understand that people of all ages have had to go through stages as I have. I feel, someone who has reached a stage in their life in which younger children and newlyweds aren't a concern, it's hard to feel that 'connection'. I'm trying not to sound ungrateful or disrespectful in anyway, because I'm not. Please understand

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Hi Kelli.....

 

I understand what you are saying...Stuff is way different than when I was 19, 29, or 39....

 

Socially and otherwise...You are right...there are aspects about being younger now, that older folks don't have a clue about....That's why I thought the new Forum was such a *great* idea...

 

Just trying to get the idea across, that under no circumstances should younger folks think they are relegated to that Forum, solely or even mainly, unless they want to be........

 

StrokeNet is all about folks sharing their Stroke and Caregiving experiences. There are aspects of that , that are the same, regardless of age...The same problems and concerns are continually raised by newbies of all ages...

The younger folks, just have some kinda different ones, that they will benefit by peer experiences...

 

And we're all Strokers or Caregivers or we wouldn't be here...<G>....!

 

Care....

 

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Well said Gary. I think the young survivors can learn from our experience. I had a stroke at a young age, 30, that was 26 years ago . I have 26 years of experience to share with young and older survivors.

 

I do hope the young survivors will post in other forums and not stay in their little corner. We all have a story to tell and our experience can benifit young and old.

 

mc

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Hi Kelli.....

 

I understand what you are saying...Stuff is way different than when I was 19, 29, or 39....

 

Socially and otherwise...You are right...there are aspects about being younger now, that older folks don't have a clue about....That's why I thought the new Forum was such a *great* idea...

 

Just trying to get the idea across, that under no circumstances should younger folks think they are relegated to that Forum, solely or even mainly, unless they want to be........

 

StrokeNet is all about folks sharing their Stroke and Caregiving experiences. There are aspects of that , that are the same, regardless of age...The same problems and concerns are continually raised by newbies of all ages...

The younger folks, just have some kinda different ones, that they will benefit by peer experiences...

 

And we're all Strokers or Caregivers or we wouldn't be here...<G>....!

 

Care....

 

 

Well said Gary. I think any of us over 40yrs. old have many things to share with the young strokees, there's our experiences and wisdom just to name a few. That said we older survivors as well have many things we can also learn from the younger group. They should always feel that they can pop into one of the chats, or PM one of us to ask a question. One sad thing about stroke is that it plays no favorites, it attacks everyone from the newborn to the senior. Thank god for Strokenet, it allows all of us, Caregivers, Family, Friends, and of course the Survivors young and old to stand together as one.

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Sometimes it is so very hard to communicate using a computer. We have to depend upon the written word and any emotion we feel can easily be misinterpreted based upon the time of day we read it, our general mood, any one of a hundred things. I wonder if that has happened with me.

 

My mother in law is one of a few 'senior saints' in her church. These wonderful, special people sometimes get the feeling that because a new class with emphasis on an issue having to do with the younger crowd is formed they are somehow less appreciated - their place is diminished within the congregation. It is difficult for her to understand that the new class has been formed in order to provide a place for a particular issue to be addressed by those people facing it. It has nothing to do with disenfranchising the elders in the church, rather the point is to provide a comfortable place for a particular group to deal with an issue or issues related to their special situation.

 

So it is at The Stroke Network. The forum directed at the young stroke survivor is not intended to polarize stroke survivors. I'm pretty sure younger stroke survivors have used various forum topics in the past and they certainly will in the future. However, now they have a place they can call 'home'. They can come together to discuss specific issues they are having. Anyone here is welcome to read the forum. However, the moderator (who has responsibility for this forum) has chosen to provide a place to be 'for and by' this group.

 

These people may be younger, however, they are facing a lot of issues they shouldn't have to face. I for one am pleased they have a place of their own to vent with one another. We old fogies often think our way is the best way, even though we say we understand their situation! Yes, yes, I know some of the survivors here had their stroke(s) at the time in life this forum addresses, however, let's give these folks their 'soft place to fall'. They are our next generation of volunteers who will help to continue to carry this site forward!

 

By the way, these thoughts are mine alone. I have not discussed the Young Stroke Survivor Forum with any other management or upper management staff! I want each and everyone to know how very much I appreciate the valuable experience, strength and most of all the hope you share on a daily basis. Without each and everyone of you our site would somehow not be the same. Thank you all for being you.

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a place called "home' is just 'our' way, as you said Ann, to vent about issues that ARE relevant to us.

 

I joined in discussions prior to the new board. I will continue to also us the "regular" board. To see some of the people post on it is comforting.

 

I know when I first stroked, I asked about a meeting that was more focused on younger people. The stroke meetings that are available to me, well frankly I'm the youngest one there.

 

To know that other people are out there that are going through some of the same daily struggles is reassuring. I know we all go through daily struggles. Mountains as I heard here before.

 

Either way I know that there is other help and support from you all. Without your compassion and wisdom, quite a few times in my journey would have been made harder.

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  • 1 month later...

Hello im a 33yr newbie to this site, i had my stroke 3yrs ago & have searched every where for something relating to young stroke survivors. Iv felt since iv had my stroke that others look at me differently & feel as though because im still young i'll recover a lot quicker. I do live in a small remote area & the most experience anyone seems to have had to do with strokes are 60+yrs. I think it may come down to a lack of education regarding strokes.

So many tell me, oh but your so young, you should recover well & i began to feel singled out in a silly kind of a way.

Reading the first post, An Open Note to the Young Folk on StrokeNet, then comments to follow, made me feel warm & welcome with a smile.

For me i have felt as though i just wanted to find others my age, i thought that strokes in young people were rare & now i am happy to know that im not alone.

I also now feel more than welcome to post anywhere id like to on stroke net, its sounds crazy but yes i did feel like maybe i should just post in certain areas. its not that i dont feel welcome, just again its that feeling of being out of place. Im so happy that i have had a look around stroke net & stumbled on all the lovely posts/comments iv just been reading.

Thankyou everyone :)

Im slowly putting my life back together, it is hard to keep everything going. I really took my life for granted before i had my stroke.

I wish at times that my husband and i had been married & together a lot longer before my stroke, we were only married 5months but i guess i am lucky, my husband knew my health was not good so its not like we didnt know some thing may go wrong, but having my stroke was a shock to us both just like it is to any one of any age.

I will have you all know that i am so pleased that iv found stroke net, iv been feeling a whole lot better about myself (as good as any stroke survivor could feel)

since iv found this site.

I look forward to meeting many more people & reading lots of inspiring posts. :)

Thanx Twinkle :friends:

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gary this was a very good post. you extended your hand out to help young survivors, which is what strokenet is all about, young or ancient we all are brought together by stroke. i like kelly was interested in a younger group when i had my stroke at 48(which is really not young in the terms of a stroke. but i was surrounded by older folks and i felt alittle out of place. but the more i listened to the rehab and older people talking, we all were the same. age did not matter.

i too agree the yungins, need a place for themselves to discuss their issues they are experiencing. (we all remember, i think) LOL what is was like to be young. we had different things we talked about with our friends after a traumatic occurrence in our lives and not with our parents. i am happy steve had another of his good visions to start this forum for the kids. kelli was an excellent choice to be moderator for the forum. we all can extend our hand too like gary did to listen and talk with them if they want too. after all, all of us are trying to live a new life after a stroke. we can get through this.

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I thank you for the support.

 

I conqur!!!

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Gary Good posting,

 

 

I am 33 and had a cerebal inferact stroke at aged 11. So I know what its like to be young survivor, like many others on this site too. Before I found this network site I felt ostreised owing to the fact that there was no groups to support younger stroke survivors. My hospital sent me to therapy groups and keep fit classes where I was always the younger person. Which at first kinda made me feel different I felt like I was the only one lol because of age gap. But after some time I felt it never really mattered to me as we all had the same thing in common it just effected us all in many different ways but in so many other ways I related to everyone.

 

 

Much like this site I have gained so much help and been so gratefull of words of advice from friends on here. I look forward to chatting to you alll soon :sleazy:

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\

 

there was no groups to support younger stroke survivors. My hospital sent me to therapy groups and keep fit classes where I was always the younger person.

 

 

 

Marnie.. I can agree with you. I WAS the youngest person in the whole rehab. When I saw the people who were in rehab with me i felt like no one would understand. Knowing you were so young, I couldn't even begin to imagine what you had to go through. I'm sorry you had a stroke but glad in the fact that you recovered and are here to share. I hope to see you in chat.

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Hi Gary,

 

That was a good post. I know to that it takes time. When I first came home from the hospital I was in a wheel chair then I progressed to a four prong cane. You just need to give yourself time.

 

 

Bruce Schwentker

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Another very important aspect of the young survivor forum is this:

 

Even though strokes have become more common among 40 to 50 year olds, that awareness is still not common knowledge to most people. Dealing with the personal and physical challenges that society is not even aware is quite difficult and isolating. The comfort of knowing you are not alone, not shunned but rather accepted for who you are ~ young and had a stroke ~ because it happened to them too.

 

My stroke was 2 weeks before my 42nd birthday, in rehab I kept referring to it as a stroke. My husband kept telling me I didn't have one...I was too young (of course he was wrong). That just made me feel worse and I remember how badly I wanted to just see or find someone my age to know that I wasn't the only oddity this could happen to.

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  • 2 weeks later...

When I was assessed by a physical therapist at the hospital, they said that I was doing so well that I could make my recovery at home. So, I never had any rehab. I did recover my coordination and strength in a few months. But I did not have any contact with any other stroke survivor. My deafness prevented me from participating in group therapy. I searched up and down the internet for a place exactly like this one. Even though it's been 4 1/2 years post-stroke, I'm so grateful to have found Strokenet.

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  • 2 months later...

Hello everyone,

I've been reading eveyone's comments and I can relate and I'm so happy that I found this site where I can find friends that can actually understand what I'm going through since I had my stroke I was 4weeks away from graduating nursing school. It's been very frustrating for me when a lot of my so called friends from nursing school would post their different positionns in the hospital on facebook on my wall knowing that I was not able to finish and take my boards and because of the disabilities that I was left with I will probably never be able to work as a nurse.

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Hi Gary!

 

Thank you for your post. I think the more mature folks are wonderful teachers & friends!! Heck, I think stroke ages us in a way.. but I appreciate reading the posts from those more seasoned. Its a scary situation & knowing you & the few others I've met so far can relate to things I'm feeling/going through makes it a lil less scary!

 

It sucks we're all united in this way but THANK GOD we're here for each other!!

 

~Blessings,

Danielle

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When I was assessed by a physical therapist at the hospital, they said that I was doing so well that I could make my recovery at home. So, I never had any rehab. I did recover my coordination and strength in a few months. But I did not have any contact with any other stroke survivor. My deafness prevented me from participating in group therapy. I searched up and down the internet for a place exactly like this one. Even though it's been 4 1/2 years post-stroke, I'm so grateful to have found Strokenet.

 

 

Welcome moonrocket!

 

I'm not deaf (yet?), but I have studied ASL a little -- enough to recognize that some of my new deficits make it more difficult in unexpected ways. I'm curious to know what your experience, if any, has been with that, if you're willing to discuss it.

 

And even if not, welcome to the group. We're glad to have you here!

 

David

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  • 3 weeks later...
  • 4 weeks later...

Thank you for that post. As a young survivor (my stroke was at 18) I can say that I do value input that I receive from ALL stroke survivors despite age. There is just a loneliness feeling that a young survivor experiences that is hard to explain. There were no pamplets I could pick up that talked about returning to college after a stroke or how to start dating again. These are all things I had to relearn on my own. I remember asking my doctor if I could ever ride a roller coaster again or get a tattoo, these were questions my doctor did not have the answer to because I did not fit the stroke patient stereotype. I think there is a common understanding that young survivors have with eachother but dont worry, we do understand that we are all stroke survivors and your input is greatly appreciated so Thank you!!!

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hi manders, and yes i totally agree with you no matter how old you are young or old it is very hard to get the answer that you are looking for i know as an older person who had a stroke i was 50 years old i find that noone truely understands me about what it is like dealing with the emotional rollercoaster or even how you are feeling it is definetly a i am not sure what i should be doing or if how i am feeling i should be feeling i am only sure of one thing and that is that we have access to the stroke net and to be able to post it is very theraputic , and i guess the only answer that i can give you that is valid is that you just do the best as you can young or old you are dealing with lonlyness and the land of the unknown so you just do the best that you can and hope for the best manders but i think that we all have a common goal youung or old and that is to hope that some one anyone can understand what it is really like, and i guess that all you can really do is hope for the best , i know thats what i do and to never give up as long as you are able to hope brcause hope is all that we have good luck in your recovery manders, and always fight the good fight because i know that it is worth it

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