Have people stopped having strokes ?

aHi Doug, 

You are correct. There has been a dearth of posts over the last few months, and I too pondered where are all these survivors' stories, questions, tips, articles what I used to look forward to. Seeing only one or two replies from a blog or question, I seem that EnableMe is missing something. I see on Facebook a variety of group related to TBI, Aphasia, Stroke Survivors etc. all with regular posts both messages and videos. Although I read these posts and find them very interesting and supporting, I do have concerns about the privacy of Facebook. privacy of Facebook. It is easy to post on Facebook, but it wants to get all of your 'information' so they can send you links and advertising. 

This is why I feel that EnableMe is must more confidential and discreet rather that an open forum.  Of course, there are pro and cons, but for me, as an EnableMe user, I would prefer these conversations and messages private within the group. user, I would prefer these conversations and messages private within the group. 

Like Doug, I hope more people, both survivors, and their families, use EnableMe more by sending messages, videos, interesting and relative articles, their stories, triumphs or fails. This is a very safe forum compared to other public forums.

Does anybody else feel the same way?

Marcus 

Hi Marcus and Doug

Yes I do feel the same way about the confidentiality side of things. EnableMe gives me a confident and secure feeling when I am on it.

I have posted recently some video's on a Facebook Stroke Support site - something I though long and hard about before doing.  I have enjoyed the face to face contact this brings, eye to eye (even over technology) helps me.  I understand the flipside of Facebook and feel I am able to manage this - many years later this is.  I would not have been confident of posting a video even two years ago.  Shows how much I have grown and healed since coming across some much needed support that began with coming across this site.

I hadn't even thought of doing a video post on EnableMe - basically because I need to look into how that can be done.  

I am conscious of anything I write whether it be on EnableMe or on a Facebook site.  

I too hope to see more posts by people - I just penned a long reply to someone and bang my lap top just shut down spontaneously.  So I'll start again tomorrow on that reply! We can learn so much from each other.

I am in a Stroke Support Group and do give this site such a good review however I know some people in the group say they find it difficult to navigate. I still encourage people to hop on it and have a look around.

Sue

.... a lot of mistakes in the end of my comment - spelling, double words, lost of thoughts .... I will blame that on cognitive fatigue. But no one should worry about mistakes in this group, just put it out there. 

Don't lose any sleep about mistakes. All survivors and most if not all carers would have experienced stuff like that. They get less significant over time, in fact my partner appears perfectly normal unless she gets stressed. Now that we have one the kangaroo court battle and she has regained control of her life, I expect the incidence of stress will decrease significantly. Seeing the quasi-judicial scum squirming when the barrister attacked their well-practiced skullduggery was some of the best entertainment I have ever witnessed. There have been a few instances in support groups where it has been assumed that she is the carer and I the survivor.

Yes maybe stroke victims can also have another stroke. I had one a few months ago, again we checked bloods and yes one part says that I am on the border that tells me to have another stroke. Again check your doctor, check your specialists, and have a look and see how you feel. Now I am not using aspirin, now I use another blood thinner. Again who knows what happens? But smile and be happy you are alive!

From what I've been told during our consultations with medical and allied health professionals, some kinds of 'strokes' are much more likely to be repeated than others. In my partner's case it was a spontaneous bleed rather than  conventional blockage or aneurysm, and the neurologist advised that the bleed was probably a once-off affair and the chances of a repeat are infinitesimal. On the other hand, a friend who gets blockages has had numerous repeats and the medical fraternity doesn't seem to have a clue why.

It appears that there is a genetic predisposition to circulatory problems in my partner's family, as one of her sisters has a very unusual aortic delamination issue that mimics most of the symptoms of a heart attack, and the other sister is believed to have an untreatable  brain aneurysm although she is doing her utmost to hide the complaint (family conflict reasons). Personally I don't have a lot of sympathy for the sisters as they have deliberately set about to ruin my partner's life. Mind you it seems that karma has caught up with them.

my medical team advise me that the meds i take without fail would mean any further stroke was highly unlikely.  but i do agree with your comments on the dearth of posts. I previously accessed strokeline community via their 'old' site.  it was active, positive, helpful and very engaging with a mirriad of members and professionals supporting, posting and commenting as opposed this quiet and at times unhelpful group.  I continue to access enableme to gain fact sheet information, but the support, references, guidance and general comfort that was available on the previous site is not here - sad but true.