Aphasia

[Debra]

Hi Blueday

It is rainy today, hopefully it wont rainy on holiday!! It seems like you are a good persons, itis interesten to see 'Dr Jeckll ad Mr Hyde'.

Debsxx

[blueday]

Yes Debs....Dr Jekyll is good........if you see Mr. Hyde leave him alone...lol

Keep writing Debbie.....helps your Brain to make it's connections.

Edited August 28, 2010 by bogbrush
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[JayKay]

My mum still has speech therapy 4 years on! But then, she lives in France.... There are more speech therapists there, but it just goes to show what could happen if we had more resources. Good luck Rod, getting help for Merrill.

[Leo]

Hi BlueDay,

Nice to see someone from London!

I haven't experienced aphasia (I don't think) but I do struggle with words sometimes, especially when tired.

So many of us were diagnosed with migraines for years before our SAH ...

Am tired now so may not be especially coherent. Sorry!

Leonie

[blueday]

Hi Leonie…… and thanks for your input.

What was I saying?.......ah yes. That was a bit of a joke as in the mornings I am at my best, by afternoons and evenings I deteriorate….but I know more about myself now so I can deal with things more successfully and socially. I have tried to disguise and hide my personal disabilities, not as well as I think at times.

There is a cycle in life which is quite natural when you look at speech and language etc.

A child has to learn develop and form. Natural ageing, forgetfulness, some confusion not as strong etc… all natural.

In this site one of our major support groups is Subarachnoid Haemorrhage injuries, but we are all in the same pot….Strokes..Trauma and Brain injuries and others. We are the Survivors whose life has been shunted to one side. We must all be positive because life is still good for us all, at times just take a different route to find our happiness and contentment.

I make the comparison to us as a Car. Any Car needs oil…..maintenance……spare tools to keep it running sweet and reliable. Maintain it and it will take you anywhere and safely. (just like my old Nissan….130,000 miles and still running!). So ‘Maintain’ yourself!

Leonie (nice unusual name)…..you said you “struggle with words sometimes, especially when tired.”

You are in good company as we all understand. If we were on a scale 1 to 10 ….mild – moderate - severe.. we can all find our own place.

There are 518 members here at BTG with 118 active members I have discovered there are two people with Aphasia which at the moment which leave us in the 0.259% (who else is good at Maths….is that correct?) so the 400 non–active members are just sleeping…….WAKEY…WAKEY ! I am sure they will have more input when the time is right for them too.

As a sideline, when this site was first created (was it Karen…no names were mentioned at the Home page) by a fellow Survivor with personal experience whose life was shunted to one side too. The tools were given to us to help ourselves to rehabilitate us…..makes this site unique as it is an Active site. You do your own writing, do your own reading do your own comprehension and understanding…..strengthen yourself for your own life.

I included this Wellcome Trust clip which I found interesting…..may not apply to you all but maybe in sections. If anyone is interested just let me know.

http://www.fil.ion.ucl.ac.uk/WTfilms.html

Wellcome Trust - Talking Heads

That’s my rehab today……if some one asks me how long it took to write this….I’d lie….lol !

Edited August 28, 2010 by bogbrush
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[JayKay]

Yeah, WAKEY WAKEY people!

Blueday you're so positive, you are an inspiration But you are right, life is good for us all.

[Leo]

Thanks for the compliment on my name. Made me smile!

You have an incredibly amazing attitude... Puts me to shame

Yes, we are all survivors and its wonderful that we are all still here to tell the tale and smile about it.

Thanks for the positive mojo!

[Karen]

Hi Blueday,

Yes, it was me who started this site in 2006, a year after I had the SAH. When my recovery was going a lot slower than what I had been told .... you know, the 3-6 month normal recovery hospital speel! It really wasn't happening for me and I found great comfort in being able to talk to fellow survivors, who were experiencing much of the same. It helped me to feel "normal"... or should I say, what I was experiencing.

Wessex Neuro had a forum, where I met 3 or 4 of some of the early members that are still with us now on BTG .... Unfortunately, Wessex Neuro decided to shut their forum down (it only had a handful of people using it and wasn't moderated, so plenty of spam), literally overnight and without warning. At that point, I felt as though my life line had been pulled out and felt lost....

Luckily, I'd obtained a few of these guys email addresses, so I still had some contact, but knew that if the support had been beneficial to me, then surely it would be the same for other SAH Survivors and their families? It's all a bit of a long story and perhaps something that I will write on the home page for BTG's 4th anniversary.

However, I never forget that I couldn't have started this site without my son Chris, who deals with the technical side of running it, input from my daughter Lauren in it's conception and last, but not least Keith aka Bogbrush, who I managed to persuade help me run the site's Admin after he joined BTG (I could see that he had promise!) .... Keith's been an absolute God send and has a very good ear that I "bend" on many occasions and has also made some excellent contributions to our homepage.

We also have a very good team of Moderators .... all of them have had a SAH and many of them are still recovering themselves, some work, some have young families but dedicate their time to maintaining the forums on a daily basis or whenever they feel able to participate on the site.

BTG will always be a team effort, along with our members that support others, that are having a bad day ... and we certainly have a lovely bunch of members on these forums, that are willing to take their time out to reply and support others.

As for active members, then people come and go .... their lives move on, which is good and hopefully shows that for some, life can get back to normal ... or as normal as it gets! Many still look in or contact me privately, whether it's just at christmas or a funny email, to indicate that they're still alive and kicking .... no words need to be spoken! We have also had donations from guests that have never joined as members and therefore haven't contributed to the forums, but have found great comfort from just reading what you guys have written.

Anyway, this is turning into an epic, so will leave it here .... xx

[JayKay]

Well Karen, all I can say is THANK YOU! When I was in hospital I was already thinking about setting up a help group locally, which I will still do at some point so we can get together for coffee and a chat or something, but in the meantime BTG is a godsend. Like Bogbrush then!!

[blueday]

Thanks for sharing that with us.....It is interesting how the hands and bolts got this together and despite your own illness and recovery your family (Incorporated) rallied around and all can share this success. At what you achieved is great......I'm sure you hear quite a few good stories about other peoples achievements and recoveries but I'm sure that there have been great successes at BTG you don't even know about.

Thanks to you and your team !!!!!!

Edited August 28, 2010 by bogbrush
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[blueday]

Incidentally Karen........isn't it time to elevate Keith's nickname?

Edited August 28, 2010 by bogbrush
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[blueday]

Hiya Jaykay,

You said your Mum is still having Speech Therapy 4 years later......same as me.

Did your Mum have an SAH like you? Do you think it is hereditary?

In our family when my Mum was mature she had an aneurysm in her stomach…….and my Grandmother had an SAH. I pray that I’m the only one in the family that inherited it………if I did, it could be a coincidence? I had problems when I was a boy at 9 years old.

I think they will write me off soon……..I can’t think of the euphemism. They can only do so much.

I may have the opportunity to be accepted at a Specialist Therapy for Disabled people. It covers three months residential therapy, more intensive where they teach you other skills and hopefully some employment. I think they work you harder in many ways but things sound exciting for me.

Speech and Language therapy, Physiotherapists for my leg hopefully after my appointment with the Wellcome Trust whether they can identify the damage to my Pituitary Gland.

These were the questions they asked:

Presenting Difficulties (Please mark any of the following)

Cognitive

Memory Understanding Concentration Planning/Organising

Problem Solving Motivation/Initiation Word Finding

Behavioral

Aggression- Physical -Verbal

In appropriate Behavior

Alcohol / Drug Abuse

Details ……………………………………………………………………….

Communication

Expressive Dysphasia Receptive Dysphasia Dysarthia (Aphasia)

Physical Difficulties

………..etc

Under the Cognitive list of 7 entries I had to underline them all…!

They also do counselling into Depression, Mood Swings and Anxiety and Emotional things which all effect me too. They think my Pituitary Gland effects that, which I am trying to learn more about it and research before I go to the Wellcome Trust.

One thing if I do go it gives my partner a well earned change and rest……lol. We are just talking about it but three months is a long time away……you do get breaks but she’s worried about me already.(Worried about me getting breaks too….lol)

So if I go quiet for 3 months……..you’ll know where I been.

Edited August 28, 2010 by bogbrush
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[Karen]

Hi Blueday,

Thanks for your kind words ....

Not sure what you would suggest to elevate Keith's nickname .... Answers on a post card please! But yes, he's a good guy and a great asset to BTG and to me!

Have just seen that you've posted again, so will reply later ... hopefully when I get a spare few minutes to re-read and let it sink in ... xx

Jen,

Thanks for your kinds words too .... I'm not any different than the next person and if you feel that you can set up a local support group, then go for it! Only do it though, when you're feeling strong enough .... and you've got things sorted in your own life (if that makes sense!) as it can put added pressure on you and you're very early into your recovery ... so have a bit of "me" time for a while..

xx

[LUISA]

hello Blueday

In respect to hereditary SHA just fyg my grandmother/aunt and cousin from mothers side all died from sha eventhough doctors still insist they find no relation??????

[blueday]

I am having second thoughts about developing this ‘Aphasia’ page. In my recovery I try to learn more about my disabilities……how to recover……how to strengthen…how to walk…. how to be balanced and sociable in this world. Am I doing the right thing? as my anxieties increase.

I sometimes forget that other people read this and it’s natural to think…”Hey, I felt that” - “Have I got that!.” At times reading Doctors books is the worse thing, after ten minutes you got so much wrong with yourself. This is for information – you have to be balanced in your approach and keep yourself healthy

This is more a blueday for me today but I hope you get the feel of what I am trying to say get the ‘gist’ is a good expression for me.

I will let Dr. Gerald Chodak doing my talking.

http://www.youtube.com/watch?v=6h7Frkj96yM&NR=1

P.S If i put in too much information then please tell me and i will stop. Many thanks.

Edited August 28, 2010 by bogbrush
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[JayKay]

Hi again Blueday. No, my mum had a stroke caused by a clot. They said this was caused by atrial fibrillation (that we didn't know she had), but now it transpires that she, my sister and a nephew all have too many platelets, and that thickens the blood... so who knows why she had the stroke really. Her mother had mini-strokes and then died from a massive stroke at 76. Because she had mini ones first, my boss the Consultant says she probably had a clot rather than a bleed but of course we'll never really know. They say (I believe) that SAH can run in families if you have at least 2 first degree relatives who've had one.

Karen - you are right: I'm definitely planning to look after myself first, but to have the goal of founding a group is something to look forward to.

[bogbrush]

Looks like a bit of a love-fest going on Thank you for your kind words about this site and than you Karen for your kind words too

Not sure how my nickname should be elevated. I've been called lots of things in the past. some of them not repeatable on here! Anyway, it describes me perfectly as I'm clean round the bend

OK, back to aphasia ...

[Karen]

Blueday,

It sounds as though you're having a bit of a bad day (if I'm reading your post correctly) ..... please keep posting as I for one have found your posts informative, interesting and positive and I'm sure that others that are experiencing the same, will also draw comfort from your own experiences.

In my early recovery days and before this website came about and even perhaps after, for a short time ..... I found myself trawling the internet for information and looking for answers .... to be honest, I'm not sure how many times that I could have buried myself (literally), as most of the info was the worse case scenario .... I think that, yes it's good to be informed .... but some of the stuff that I've read, well it's caused me many a sleepless night, to say the least.... However, I tend to still read the info, but have a more balanced view.... I think that you have to, or it does send you around the bend ... and I've certainly been there.... more than once...

The info that you're putting on here, will only help ..... I certainly watched the You Tube clip and it was good to hear about the different types of stroke and it was explained really well and easy to comprehend. I'm still quite shocked that people don't realise that a SAH is a type of stroke .... mind you, I left hospital also not knowing that it was a stroke .... now I know different.... thanks to the internet and it explained what deficits that I'm living with.

I've also done a bit of personal research into the pituitary gland .... I've just found the following article that I wrote. http://www.behindthegray.net/vbulletin/showthread.php?t=2099&highlight=pituitary+gland

Hope that tomorrow is a better day for you .... hugs to you and keep posting, good days and bad days...that's what we're here for. xx

[blueday]

Karen many thanks for you inclusion and your time.

You gave me loads to read…….which I will work through like an Otter (hey let’s build another bridge!)

Many thanks for the Pituitary Gland article which is very interesting but complicated things that I don’t understand and big names in jargon loses me….but today I am an Otter! So delicate and complicated. Why didn’t the good Lord just give us a tap! Off and on…..I could fix that.

One thing I have learnt is “FATIGUE” is a big word for us all in our recovery. I am working my way through of peoples individual experiences…..all 39 names!....Who was counting (erm…I did lol). Stunning really how we all shared and deal with. I do have that problem so I will add my 40th name, but many thanks for compiling and working with that all and finding it for us all.

In the future I will have to put forward a sensible promotion to yourself, as “I had a Dream”. Something on the lines of a Reunion…. a thankful collection (there I go…what is the word?) a Meeting, Gathering of survivors….Strokes and SAH’s hopefully a meal evening, hopefully at the Grosvenor - London or like or elsewhere. Surprise it has to be properly funded as many of us are at different levels, some not working some part time working etc. and money is tight. The objective is……the survivors a slap on the back, meeting and making good friends, but more important in many ways its knowledge and information to the Public, mainly the younger one’s to be aware how many Strokes there are each year. Knowledge is information and a protector for the young ’uns.

Karen….somebody will have to make a ‘Speech’ to the assembly (so start working on it lol!)….there’s always a thought you do have ‘bogbrush’ lol. Incidentally his nickname should be elevated now…. ‘Basilbrush’ ‘bog attendant’ ‘bogtechnic’……

Ah yes ‘Technical Director’. Second thoughts nahh! He’ll push in for a rise or a new Company car!

As you all know I am just a ‘Gypsy type’ right now living at the BTG for my rehab, but I bow to the BTG for giving me the tools.

Today’s Inspirational Thought........

This very morning in your recovery

Look up to the Skies

And aim for the Stars.

Even though you cannot see them.

If, things don’t work out or fail

You are at the peek of

the highest mountains.

Tonight ponder the Stars again!

See their shimmering light and shine.

Enjoy as they twinkle…. just for you!

Their Lights will show you again

what you missed and failed.

Tomorrow in your recovery

Aim for your Stars again!

Everyday until you Win…and touch them…

Shine with them…enjoy them..

Don’t hide or pocket them

As you are at you’re Best…recovered.

Think on….

As you walk and talk, smile and laugh

with your friends or lovers think on again

In a quiet moment look up to your Stars

You Special Survivor….

In your private moment look up

smile and think as you certainly know,

The Stars shine and shimmer

Joining others journeys

For the world’s Survivors!

PS. Sorry if I rambled and went on too long

The reason is…

It’s a long way to go……to my Stars!

@blueday hnc (otherwise anon.)

Edited August 28, 2010 by bogbrush
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[Janet]

Hi Blueday

Don't worry too much about the "Pituitary Gland" its a very small gland with a big job but basically it controls the different hormones produced by the body. Love the inspirational thought for today

[momo]

What a nice 'inspirational thought' Blueday, nice to read and well written. Enjoy the rest of your day,

momo

[blueday]

With Aphasia any patient can be considered Mild / Moderate/ Chronic with Speech and Language problems, but when understanding language when receiving or expressing language for me it is fascinating so other words are included like Cognitive Comprehension, Learning, Memory, Understanding Concentration, Planning/Organising, Problem Solving, Motivation/Initiation,Word Finding, quite a list.

Compare this list to other ‘normal’ unaffected people. Some are talented with Mathematics…some are not. Some read quickly…some take time to injest the words. Concentration…..sharp and quick – include and affect them with fatigue….mind wanders asking for repetition to take it in. Compare this to Stroke and SAH survivors is it any different? I let you answer your own questions.

I want to give you three examples whose life has been affected. I know some out there will remember what I am talking about or seen it too.

1. London Report News (one month or so ago, I think) the article was about a male man around 50 years old, his profession was a ‘Painter and Decorator’ prior to his SAH and Stroke with Aphasia. Needless I paid attention. He admits that he was not an Artist other than twiddling drawings when he was at school. (who didn’t) After his illness he had become a recluse, unemployed and suffered with depression. He started painting. It helped him. Your own opinion how talented he was as an artist is your own choice. I saw it; I would say a good artist. Didn’t all grab me….but I saw his talent. He painted everyday… on walls on canvas…constantly. Himself was his own critic. Painted so many pictures the T.V Company covered him at 6 o’clock prime time. Where did his new gift come from? Was it just his own rehabilitation? I will think more about that.

2. The child with Autism….was not sociable, did not talk with learning disabilities. His parents could not cope with him so he was put in a Home for Autism sufferers. His treat at the Home with a group of Autistic children were taken out. In a coach taken to a famous Manor house, led around by the Warden and volunteer supporters. Showing those kids well known and grand rooms, lavish and exotic….(not like my own home). There were ropes around an antique piano…..’Do not touch’ said all over it. That caught his attention…..he curled under the ropes and sat at the Piano and hit the keys. The Warden, understandably went to remove him as the volunteers called him out. After hitting the keys a few times…… he played the antique Piano. More so than you think….he was talented, as if he could play a concerto. How? At the home he had learning disabilities….had never had a piano lesson in his life! In silence at the Home his pleasure was listening to his ear phones…in those days I suppose something like a Walkman. They let him complete playing his concerto (can’t remember what it was)….even the Warden. At the Home he did have Piano made available to him. Don’t talk to him….just listen!

3. The old Whicker’s World…….remember them. This is an old one, may well be in black and white. Covered a programme about a well known multi-millionaire whose name escapes me. Had been in big business for years, lived in a pressurised world. Houses all over the world, his passion for relaxation was sailing his yacht. Not the type you buy for a couple of grand when second hand. Well he had a Stroke….. a big one. His live was saved as his wife was called in. He is still alive but you’ll never see him walk again….she was told. Needs constant care. As he was released from the hospital in America I think. He was released in a wheelchair. Had loads of problems. Couldn’t talk or walk and eating was a problem etc etc. Taken home all he saw was his loved yacht. To compress this after the years and his own rehab….he did walk again….he did feed himself again and slowly he did talk. He was interviewed by Alan Whicker….slowly he explained to him he re-learnt everything from the opposite side of his brain……the right artistic side of his brain did the work of his co-ordination left side. His greatest pleasure was taking his wife out again on the named after her on his yacht. He had been an accomplished sailor…in his later life he was an accomplished Survivor!

So if or when you meet someone with Aphasia, I know you are all educated in SAH and Strokes and experienced with this. They are not stupid…..they are not ignorant either. They are in rehab, as they aim for something every day. This link below explains mistakes….explains misunderstandings. Even ‘Normal’ people are guilty of it too!

Edited August 28, 2010 by bogbrush
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[JayKay]

Thank you Blueday Food for thought...

[blueday]

I hope some may have enjoyed “The Four Candles” which I included the link for a variety of reasons.

Initially….just for the humour, no harm in that. When people are more relaxed and happier I feel they are more receptive. Just like me, for me to learn and improve and recover I have to be more receptive. If I am down or depressed my learning and recovery scale is lower. From my scale 1-10 my input is 2 or 3/10, when I have my own attention for learning….my scale is 6/10 +……so no harm in humour for anyone and is more productive.

Yes I enjoyed “The Four Candles”………why?

Listening Receptive Language ---- Understanding and Comprehension (was it humour) ---- Concentration

----- Sociability ---- Expressive Language (the subject) ---- and some Memory

Improve my enunciation ---was it Four Candles -----was it Fork Handles……!

So in great humour I got some benefit from it……sadly I failed the Memory as I asked myself the question:

“What was the name of the well known comedians?” I must know… I spent an hour on it Barker and…?

am I right or wrong….was it George Barker? Richard Barker? Barker and…..? gosh it drove me crackers.

Even now as I write I don’t know! Thanks to Wikipedia I had to find it. I was close, on the right line concentrating too much on their names….. they were commonly known as “The Two Ronnie’s”…..Ronnie Barker and Ronnie Corbett….. if I had said Barker and Corbett I would have been pleased, sadly not! ‘Corbett’ had escaped me totally. So in little things I learn….tomorrow I will ask myself again, what was their name? Most frustrating at times! Also as I wake up every day over my tea…I ask myself…”what did I have for dinner last night”…..was it rice, or potatoes etc…..if I get it right then I ask myself, “At what time did you eat?” was it 7 pm or later….! Gosh can be frustrating – at 6 am I go back to bed…still thinking about it…..”What time did I eat…..?”. Today I’m happy…”The Two Ronnie’s !” Ronnie CORBETT and Ronnie Barker…………..!

Incidentally…..today is Thursday 6th May 2010….. So welcome to “Yvone”, our newest member.

Edited August 28, 2010 by bogbrush
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[Tina]

Loved the clip.... used to always watch The Two Ronnies....thanks Blueday