Where do you see yourself in five years

pollyanna1052

dolfrog said:

Tammyjane33 said:

@dolfrog im sorry you feel that way would you like to talk 

Hi Tammyjane33 
Over the last 20 years I have been fully aware of the nature of my disability, auditory processing disorder (APD), which first first came to light when our eldest son was diagnosed back in the late 1990s.
When I started to research his diagnosed issues i soon discovered that i had been living with these issues all of my life. 
I was the first adult in the UK to be diagnosed as having APd back in 2003, which was done partially to help the Medical Research Council (MRC) gain government funding for a 5 year APD research program, they needed some one to set up and run a support organisation for those who may have APD. I set up and helped run the APDUK , and MRC program ran 2004-2009.
All of my family, 3 sons, my wife and me, now have a clinical diagnosis of having APD, which is a listening disability or the brain having problems processing what the ears hear. and is the main underlying cognitive cause of developmental dyslexia.
But post diagnosis we have had little or no support from the local NHS or support agencies, I have been through disability discrimination in the workplace, and since then no employer would even answer any of my job applications, Our sons are having issues finding careers and sustainable jobs.
I have had enough of the stress and the failure of UK audiologists, speech and language and psychologists the multi discipline team who the MRC should be providing life long support, to provide any support and understanding or even discuss the possible 4 types of our disability. So it is all down to these corrupt so called medical professionals who only want to hide their ignorance and incompetence while massaging their egos,
I have had enough. 

Hi, oh how awful this is for you...to feel/be so let down by the very people who are supposed to help you.I hadn`t heard f the condition and it needs to be more widely known. Only forums like this can spread the word sometimes.

Is APD a genetic condition?, I ask as with your 3 sons having it, it sounds as if it may be. Is it anything like deafness? Or is it how the brain misinterprets what your ears hear.? I ask that question due to your wife having APD too. I`m always willing to learn about new diagnoses, that people, even professionals in health arent aware of.

I was diagnosed with HSP...another rare and little known neurological condition. Genetic testing came back negative...so we`ll never why at the age of 45, I was struck down with severe mobility issues, besides other things.

Prior to that I was wrongly diagnosed with MS.....I only pray HSP does not turn out to be the culprit,as it carries a 50% chance of being passed down.

I am hear if you want to talk some more.
Love Pollyx

dolfrog

pollyanna1052 said:. 

Hi, oh how awful this is for you...to feel/be so let down by the very people who are supposed to help you.I hadn`t heard f the condition and it needs to be more widely known. Only forums like this can spread the word sometimes.

Is APD a genetic condition?, I ask as with your 3 sons having it, it sounds as if it may be. Is it anything like deafness? Or is it how the brain misinterprets what your ears hear.? I ask that question due to your wife having APD too. I`m always willing to learn about new diagnoses, that people, even professionals in health arent aware of.

I was diagnosed with HSP...another rare and little known neurological condition. Genetic testing came back negative...so we`ll never why at the age of 45, I was struck down with severe mobility issues, besides other things.

Prior to that I was wrongly diagnosed with MS.....I only pray HSP does not turn out to be the culprit,as it carries a 50% chance of being passed down.

I am hear if you want to talk some more.
Love Pollyx

Hi @pollyann@pollyanna1052

Sorry to hear that you also have an not very well understood set of issues.

APD is about the brain having problems processing what the ears hear, there are 4 types.
1) having problems processing a target sound when there is low levels of background nosie (sometiems called speech in noise)
2) the temporal type, having problems processing the gaps betwen sounds, which can include the gaps between words inrapid speech.
3)spatial problems, identifying the location of a sound source
4) Amblyaudia the brain processing what one ear heaes better than the other (related to dichotic listening)

APD can be acquired and can also be genetic.
APD can be acquired as a result of Otitis Media (glue ear) and conditions such as Downs Syndrome which can lack immunity to Otitis Media.
APD can  have a genetic cause, especially those of us who have the temporal type which is the main underlying cause of the developmental dyslexia symptom. .research regarding the genetic cause of dyslexia have begun to identify soem of the candidate genes that can cause dyslexia can also be the cause of  APD.  
I can see that previous generations of my family had undiagnosed APD including my father, uncle and even a great aunt. 
Miss interpreting what others say during a conversations or even forgetting what was said during a conversation are common occurances.. which is why i prefer online communication which i can process in my own time, and others do not expect an instant response.  
My wife and were married ofr over 20 years before we were diagnosed, but it explained why we understood each other so well lol.P

Part of the problem is the inter-professionals politics, and using different terminology to describe the exact same issues, added to which there is their egos lol. They do not like that fact that I may know more about my condition then they do. lol

Thank you for your reply  

pollyanna1052

Thankyou..interesting reading.

I am deaf in one ear and also have problems like

 determining where a sound is coming from

missing words out of sentences

getting lost in mid conversation

misunderstanding what is said altogether and ending up laughing at myself...but it isnt at all funny when people think you are not listening

Keep pushing on hun x

dolfrog

pollyanna1052 said:

Thankyou..interesting reading.

I am deaf in one ear and also have problems like

 determining where a sound is coming from

missing words out of sentences

getting lost in mid conversation

misunderstanding what is said altogether and ending up laughing at myself...but it isnt at all funny when people think you are not listening

Keep pushing on hun x

Hi @pollyanna10@poppy123456
you might like to have a look at the subsection of one of my online research paper compilations regarding hearing loss at the Zotero web site 
https://www.zotero.org/groups/2302570/auditory_processing_disorder_apd/items/collectionKey/A4E49CLX 

OverlyAnxious

dolfrog said:

pollyanna1052 said:. 

Hi, oh how awful this is for you...to feel/be so let down by the very people who are supposed to help you.I hadn`t heard f the condition and it needs to be more widely known. Only forums like this can spread the word sometimes.

Is APD a genetic condition?, I ask as with your 3 sons having it, it sounds as if it may be. Is it anything like deafness? Or is it how the brain misinterprets what your ears hear.? I ask that question due to your wife having APD too. I`m always willing to learn about new diagnoses, that people, even professionals in health arent aware of.

I was diagnosed with HSP...another rare and little known neurological condition. Genetic testing came back negative...so we`ll never why at the age of 45, I was struck down with severe mobility issues, besides other things.

Prior to that I was wrongly diagnosed with MS.....I only pray HSP does not turn out to be the culprit,as it carries a 50% chance of being passed down.

I am hear if you want to talk some more.
Love Pollyx

Hi @pollyann@pollyanna1052

Sorry to hear that you also have an not very well understood set of issues.

APD is about the brain having problems processing what the ears hear, there are 4 types.
1) having problems processing a target sound when there is low levels of background nosie (sometiems called speech in noise)
2) the temporal type, having problems processing the gaps betwen sounds, which can include the gaps between words inrapid speech.
3)spatial problems, identifying the location of a sound source
4) Amblyaudia the brain processing what one ear heaes better than the other (related to dichotic listening)

APD can be acquired and can also be genetic.
APD can be acquired as a result of Otitis Media (glue ear) and conditions such as Downs Syndrome which can lack immunity to Otitis Media.
APD can  have a genetic cause, especially those of us who have the temporal type which is the main underlying cause of the developmental dyslexia symptom. .research regarding the genetic cause of dyslexia have begun to identify soem of the candidate genes that can cause dyslexia can also be the cause of  APD.  
I can see that previous generations of my family had undiagnosed APD including my father, uncle and even a great aunt. 
Miss interpreting what others say during a conversations or even forgetting what was said during a conversation are common occurances.. which is why i prefer online communication which i can process in my own time, and others do not expect an instant response.  
My wife and were married ofr over 20 years before we were diagnosed, but it explained why we understood each other so well lol.P

Part of the problem is the inter-professionals politics, and using different terminology to describe the exact same issues, added to which there is their egos lol. They do not like that fact that I may know more about my condition then they do. lol

Thank you for your reply  

This is very interesting.  As with Pollyanna, I'd never heard of this condition before but have some of the symptoms.  I always thought it was part of the social anxiety that I have been diagnosed with, or ASD which I am waiting for a diagnosis for.  The line you wrote about online communication instead of verbal describes myself exactly!   

 

dolfrog

Hi @OverlyAnxious
The temporal type of APD is about having problems processing the gaps between sounds, which can include the gaps between words in rapid speech. It is also the main underlying cognitive cause of the developmental dyslexia symptom.
One of the diagnostic tests used as part of an APD assessment is the Random Gap Detection Test, which attempts to measure the size of gaps between sounds an individual can process, Those of us who have the temporal type of APD have problems processing the gaps between sounds which includes the gaps between the sounds that the letters in a word represent, which is the underlying cause of our dyslexia, we are not able to use phonics, nor able to phonetically sound out new words from text. 
We also have  poor auditory memory issues which can include word recall problems, finding the right word when we want to use it to explain something during a conversation, so w have to find a different may be long winded way of explaining something. 
We also havfe problems with what are called large groups which can be anything larger than 2 or 3 people, we can only use our alternative compensating skills, coping strategies, such as lip reading and or reading body language to help fill in the processing gaps for small numbers of people at a time, and only really for those we know, as we all have different lip movements when we talk such are the various accents etc we may use. This can cause social anxiety, which can sometimes be miss diagnosed as being ASD especially by those unaware of the complexities of APD. 
There was some online adult APD research done about 10 years ago, by an Australian  psychologist , Damian Howard, and he has two of the resulting articles as downloadablew pdf files on his web site. The articles titles are "Controlling the Chaos" and "The Trouble with Strangers" which listed on the articles page of his "Ear Troubles" web site at (half way down the page)
http://www.eartroubles.com/articles.html 

deb74

Not quite sure how my life is going to pan out. I have got several disabilities and have just been diagnosed with fibromyalgia which has started to control my life. What I will be doing in 5 years depends on how mobile I am.