Aphasia

[maggie]

:redface:Hi blueday you write great posts,good luck for further recovery. I love your picture It should be mine,I recently had my 60th birthday celebrations,big achievement am very proud! The down side of reaching 60 is that like your picture I am like a ghost all of a sudden i've become invisible. Maggiex:shock:

[JayKay]

Hi Blueday - do you get a sense of achievement reading/writing that? Because you've come so far!

Re the IQ = mine hasn't been tested, but it struck a chord because one of the things I said to my psychologist is that I feel "stupid" now. She said not understanding things or getting things wrong doesn't make me stupid and that made me feel better!! I wonder how well designed the IQ test is - does it take into account the speech and understanding issues you have since the stroke? I'm not sure your IQ has actually dropped Blueday!!

I have very high standards and I don't like some of the things I do now, but I'm trying hard to believe that this is only temporary and that I will be back to the old me one day.

Good luck!

[bogbrush]

Active reader and writer at Behind the Gray after Karen’s conception and support from her own family and Bogbrush. (aka Chief Technical Director) noted very good improvement in writing, particularly after continued therapy at BTG.

Ha! Chief Technical Director? You'll be talking about Chris. I just make the tea and sweep the floor I'd have a hard job directing traffic

[blueday]

Having Aphasia is a dark place I live, lonely and frustrating. It’s not a blessing it’s a curse.

I have lived for 3 years in denial about my haemorrhage. Hoping to get better not understanding about myself. With my permanent friend it’s always here, for me 24 hours a day, every day, doesn’t even take Christmas day off and always listens to me. Not the BFG…the Big Friendly Giant it’s Bigger and Better the BTG Behind the Gray. It’s behind me when I need it most. It has in many ways ‘Awakened’ me to life. To deal with things…….to a point accepts things, but also to fight on!

Aphasia is part of my body now, but it can be used to help me. Retraining my Brain, looking at things differently, different approach and new ways to achieve things, even in small ways. We all know every journey starts with one step…. from every little seed a new Oak tree can grow.

I am trying to work around my memory deficiencies, and likewise exercise it. I explained to JayKay I remember names by association….and now for me it works with some success.

Joe, Jim Jerry are just names, don’t mean anything to me, a name is a name is a name. JayKay thankfully has included a picture of herself, and very nice too. With eyes closed I can see her…..so what is her name? I build the thread, Photographer…BTG……JayKay….Jen. I do understand it might not make sense to you, but for me it works. It’s like when people have different problems like talking…….singing is easier. Why..? God knows but it works for some. I remember a young guy won some competition on TV. it’s a name so I don’t know….was it Will was it Wilf. A very nice young man who when he spoke he had quite a nasty stammer or stutter, but he could sing perfectly. Why? Words are words. He sang so well anyway he won the competition and created his own life from it. So the Brain is a clever thing, just try a different approach.

I learnt something from that.

I was going to bore you all about the significance of making lists. I have lists for everything now with Cognitive problems…..but I live with my new constitution, I wont be caught out or “Fooled Again”….sounds like a song!

Then again with the BTG and the BOB (Brains of Britain) collectively, none of us is ever going to be Fooled Again! I’ll save that for another time.

Remember those days?

This has Awakened me to many things.

Having to ‘think’ about walking and using other not damaged parts of your brain to operate limbs in a way reminds me of the “The Awakening”….remember that film. I think Robert De Niro and Robin Williams were in it based on fact. A Doctor worked so hard randomly on offering certain drugs to people who were in a vegetative state. He successfully made them Awake… had them talking, washing, shaving and reasoning even dancing…. so a bit like me lol. I use poetic license in this as I am not catatonic (fingers crossed).It was based on fact and truth where these remarkable achievements were achieved for about 11 people for only about 2 weeks. Sadly it has never been achieved as the drugs were used far too randomly.

Nevertheless it motivates and inspires me; I must get out a DVD again.(Yeah… I know strange films for strange people)

Honestly team, I am not Catatonic…..except something like when I am in bed sleeping again. Which reminds me…..I’m off for a lie down, catch you all later.

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[Janet]

Hi Blueday

Its great to hear that you're feeling more positive have been keeping up with all your posts but not getting a lot of time on the computer lately. I see you're going to Karen's BBQ so it will be lovely to meet you and your Angel. P.S looking forward to your next installment.

[blueday]

Maggie….many thanks for your compliment. You commented on my avatar…..yes it works for me although I do find it a little haunting, as it stares at me as if words should come out but don’t. I write more and talk less now although at home I MUST try more at home. It creates more tension with my Angel. She is more an extrovert than myself now but she does need conversations and jokes….thankfully she has a good sense of humour so that keeps us going. I introvert more now and become a recluse, but I do see the dangers.

Tomorrow is my Speech & Language group but after 5 hours that will close me up again for a week. It makes a long day, with travelling its like doing a shift nearly after 7 hours. In the early evening I have to see my new Doctor with Angel as she does the explaining for me. I once went on my own to see a Doctor but what a disaster that was. What a list I have had of Doctors. I used to feel more comfortable when you had the same Doctor for years, developing a relationship, respect and trust. These days everything just seems like a business, more money more costs more funding.

Sorry Maggie this has come out like a chat so best I leave it….but............

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[Louise]

Hi there

learning names and stuff by association was how I was taught at the rehab.

postive is good.

take care

[blueday]

Brilliant...........she's about 26 years old. God help us now,

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[Karen]

Hi Blueday,

I also have to use word association and paint a picture in my mind .... It's difficult to describe it, as I haven't had any professional help, but I have to associate a word with a picture in my head ... such as somebody called Shelly .... I would picture a beach and seashells .... and break the word down. It doesn't always happen first time, but with a repeat performance, I can usually do it.

My last word that I needed to remember was Fistula .... and I pictured a clench fist ... that's the only way that I can do it now, as most names, without a continuous prompt, will just leave me.

Hope that this makes sense! xx

[blueday]

Hello team…..OK….please don’t shoot me as I’m only the messenger!

I came across something that I want to share with us all. I definitely acknowledge The Brain Help Charity in Scotland for the work they have done too about people who have had Subarachnoid Haemorrhages and Brain Injuries. They are listed below and worth a look at too.

This is for inspiration for us all as it is about Dr. Jill Bolte Taylor, as a younger woman she dedicated her life to understand how the brain works to help her own brother who was born with Schizophrenia and brain disorders. She is qualified to talk about this subject as she had her own SAH! So now as a Doctor and Scientist she does her own talking as now she talks from the inside out……like us all Survivors.

It does take some time to listen to all of this so do your e mails first then read all the articles at BTG then settle to it. As we all share personal experiences on the Home page at BTG this is one to listen to rather than read but it is the same ………just a personal experience. I can see she does not have Aphasia as such but worth seeing.

I will try to invite Dr. Bolte Taylor to our own SAH BBQ in Dorset but complicated as she is in the States so don’t hold your breath. Her recovery was GREAT…..so if she can do it so can WE! God Willing.

http://www.youtube.com/watch?v=5XTINfPhzMM Oprah Winfrey initial interview (9 mins)

How it Feels to have a stroke ..a personal experience

(20 mins)

http://www.brainhelp.co.uk/Welcome.html Brain Help Scotland

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[JayKay]

Oh I heard about her!! Thank you for the links!

[Karen]

I've listened to Jill Bolte Taylor in the past... and Walter from Brain Help is a very lovely man and runs a v.good site, so hope that you guys will pay it a visit.

xx

[maggie]

:redface:Thank you for the links really enjoyed them! Maggiex

[momo]

Thanks for this blueday. I feel I know a lot more now. When she described the sound she heard whilst having her haemorrhage it was exactly like what I heard that day at the gym, I had forgotten about the sound! I'm going visit the Brain Help website. I think all medics/nurses should listen to the first clip as part of their training.....Well spotted blueday.

[blueday]

Yes we all need inspiration at times.

Today is for me….and perhaps some others.

The title to this page is “Aphasia” so today is a little more specific.

Again I like to listen to other peoples talking; today my hero is Harvey Alter.

He will explain himself anyway, but his achievements and recovery is again brilliant!

In a nutshell he has Aphasia and quite severe. After years of rehabilitation he is who he is now. With his disabilities he has dedicated himself to help others with Aphasia in the United States…..and he has had great successes. His support system is more like a Corporation other than a Charity.

I enjoyed his speech very much…as I said before working from the inside out I appreciate the level of concentration he must have done as he completed his chat, and I’m sure he will need a rest after that!

Funnily enough listening to him talking about singing…..struck me on a subject before about stammering.

I hope I don’t bore the majority here….. from theses little things we learn and recover very much.

Today I’m writing…..tomorrow hopefully talking.

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[maggie]

:redface:Thank you once again for the link,I really enjoyed it.Coincidentally I use singing like word association. it helps me remember names,places and numbers! Your never boring blueday.....Maggiex

[momo]

Aw blueday this was just so good. Thanks for posting this. I thought I knew so much but really I know very little indeed. So much to learn. Before I came on this site I didn't even know what aphasia was. Thanks again. Oh and at the beginning I laughed (at his joke)...very few things make me laugh.

[blueday]

Thanks Momo.....we are all learning....

Maggie has learnt some of the tricks for us all.

I learnt from Elvis..."a little less conversation....a lttle more ACTION"...suits me!

I do admire Harvey....people who climb mountains they are called heroes or adventurers, but I know that Harvey went up a BIG mountain too.

Yes Momo you enjoyed it with him and laughed.....we do need some humour too..

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[blueday]

Dr. Silberstein is talking again......but at this price I advise you listen to him. With his knowledge at no charge....brilliant. I know he has helped hundreds of people with problems with Aphasia and Strokes. My quiet hero Harvey Alter is still climbing his own mountain, but touched thousands of people in the States.

I was just pointing out about 'Cognitive' problems after Strokes.

I was trying to give some 'Re-Cognition' too. What I write is what you read, you won't hear that from me.

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[blueday]

On this Aphasia page….Aphasia is never far away. In these posts today it will have a certain variation as the word is meant to be “Inspiration”. You could say I should have just put it in the Inspiration page except I want to add on a line about Aphasia.

I’m sure many visitors at BTG may have just had a stroke or Subarachnoid Haemorrhage, a loved one instead as they care for them, a person in their recovery are searching for answers, “Why Me?”. Yes we have all been there too.

Those that read here, read for a reason. Those that read here because of complications I pray their experiences are just mild, but after a Stroke or SAH I have to accept some will be moderate, how their lives have changed and then of course knowing about Strokes (as I do) I have to accept the more severe cases. In a way it’s just a label. The Medical people have to categorise, to help and treat people. But yes we are in the same boat on our own journeys…I can assure you we didn’t plan it, we didn’t order it like a holiday.

I have a charming friend who had a mild stroke. After weeks she was talking, walking, helping, driving and smiling and working again. I have been guilty too when I thought “You were lucky”. How wrong was I! WE WERE ALL LUCKY. We are all survivors. Of course what you can’t see with her is her emotional turmoil. Her tiredness and mood swings but she has learnt to deal with things.

Some of the questions people ask when they experience Strokes and SAH’s:

“Why Me?”

“When will I get better?”

“Will I improve?”

“How long will it take?”

“What about my kids?”

“What about my job?”

“What about my partner?” etc etc …..I’m sure you have some of your own questions too.

I have included some inspirational survivor’s stories. We don’t see that as such at the moment, but it can be done!

One of the strange things I notice at these links is the amount of “clicks”….how many has seen it.

Personal stories of somebody’s recovery….50 or hundreds, generally not a lot. Lacking in interest. When I put on Music links the ‘hits’ are in millions, 4,500,000 clicks. Maybe we pay more attention for our reasons.

Wes Varda. A young good looking man….and he still is!

Jim Mead. He had Faith, keep your own Faith too.

Lenice Hogan. Beauty is always there…it never goes.

OK there is a selection which will hopefully inspire you all….just refer to them rather than seeing them all now. All must understand that everybody’s Strokes are absolutely individual. Some of this will not be relevant to you but you are here because you want ‘answers’.

I am in my recovery after my own denials. I am semi-paraplegic with Aphasia and Cognitive Memory Disorders…..just labels for the Doctors. After 4 years of my SAH and therapy and rehabilitation Doctors and Therapists say polite things “How well you have done” as I have improved. Now I hear more medically that I have ‘hit my plateau target’. Is that it?. Those are euphemisms. I say “No,No,and No!”

This is not my dream. It took 8 years for Harvey Alter to climb his mountain…and he’s still climbing it.

No… Doctors this is not my plateau. It will just take more time.

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[momo]

I'm sure you've not hit your plateau blueday and we all have to think that.

Not listened to you links yet but I will.

Right that's it I'm changing my avatar...again!!

Take care.

[blueday]

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Edited August 28, 2010 by bogbrush
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[Diduck]

Inspiring and honest as ever Blueday

You humble me and my whinging over petty problems

but you also allow me to accept that everyone is entitled to set their own goals and be excited or dissapointed on the outcome

But it is the determination to keep going that you convey so well

God bless you mate

And god bless all our angels who put up with us and keep us going

Di

xx

[blueday]

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Edited August 28, 2010 by bogbrush
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[maggie]

:biggrin:Thank you blueday as ever a really good read and I think your dog is another of your angel's as are mine! What would life be without the fuzzy faces? Have a good day, Maggiexxx