Tag Archives: community

Are your genes killing you?

 

Since the seizure in 2006, I’ve had one diagnosis after another.

After a recent operation; a much needed shunt for hydrocephalus, I needed an emergency operation during recovery for the previous operation.

In all honesty, it’s all been a bit too much. I decided to do some much needed research.

My nephew was born with Hydrocephalus: water on the brain. I believe he has died.

My niece I recall had no crease between the small of her back and her bottom. Her father died last year. I haven’t seen her since she was 6 months old. She’ll be in her late 30s now.

My mum had a huge bump on her back and I’ve recently learned my older sister has similar problems with her brain but doesn’t have hydrocephalus.

My uncle has had brain surgery. It’s impossible not to recognise a genetic connection.  Are you painting the same picture as I?

It’s been a fractious family. Not seeing each other for years except at a funeral or wedding is the norm. Sad but true.

The one thing I haven’t found a connection to yet is the cystic fibrosis gene. My sister had tests and she doesn’t have one. It seems 1 in 4 siblings can get one or more. So I’m alone with that one.

The striking discovery to connect the genetic factor so far is Spina Biffida Occulta.

I’m also hoping Dr Jaleel Miyan of Manchester University managed to call on his team at Preston Hospital whilst I was there to take a sample of my CSF. Cranal Spinal Fluid. He believes the answer is in that.

We want to work with Jaleel on this subject. Because there are no pills involved in this condition, it’s difficult to raise interest from the drug companies to support his research for that reason. No pills, no profit.

Anyways, Spina Biffida literally means split spine. A clump of hair or cyst can be found in the area where the spine is affected. Strangely enough, I had one removed from the nape of my neck where my spine sits which I had to have removed some years ago. It hurt in the summer when it swelled. It gave me a headache. I still have the hole there.

The lump my mother had on her back was a cyst. It didn’t trouble her but it was annoying for her. It did sometimes ache in the summer. She was small in stature. Often complained of headaches. She had bronchitis every year but didn’t smoke. She was always considered cold and unfeeling; this was clearly an indication she too was ASD. Autistic/Asperger Syndrome Condition Was she the CF carrier?

The phrase I still remember her saying to me quietly was: ‘you’ll die a lonely old lady. You’re aloof’. I used to press her for love, a cuddle, anything to try and communicate with her as a daughter. Unknowing at the time, I was ASD too! This was late 60s and early 70s when little was known about this CONDITION! It’s in capitals because often people confuse it with ‘illness’, ‘disease’. Think of it as a different set of codes for those with ASD that read differently to those of the A-typical being.

Anyway, Now I know her more than I ever did. She’s been dead for some time now but I can relate to her. Now I’m coming up to 60 and trying to find answers so I can explain to my daughter and my grandson how these conditions may affect them or their children.

But it’s difficult when you don’t know where she lives. I know how she feels about me. You could say: ‘history repeating itself’. Maybe when I’m dead she’ll understand better. But of course, that’s too late. Living for each other and serving each other is for when you’re alive.

In conclusion, I have to find the answers if I am to understand the Mcr Voices women I currently serve and will continue to serve. Helping them to find a way out of situations similar to my own is my lifetime’s work.  I also dearly want to see my grandson enjoy life with a healthy family as and when he cares to have one.

 

Thank you

Square Circle Theatre

 

 

 

 

MancVox

As a Manc, I’m curious to know if people believe all they read on the internet and in newspapers.

We’re currently reaching out to you to ask you to engage with the attached survey either online or by email.

MancVox‏

The aim is: to promote social cohesion by counteracting negative images of social groups presented by the press and social media.

I’ve attached a hard copy too should you wish to answer the questions privately and send to ginatfost@outlook.com your response.

Much appreciated. The questions are below:

  1. Do you believe the stories you read in the press about other groups of people?

Yes

No

Sometimes

  1. How likely are you to believe a story your parents have told you?

highly likely

likely

not at all

  1. How likely are you likely to believe a story a friend has told you?

Very likely

likely

not likely

  1. How likely are you to believe a story your children have told you?

Very likely

likely

Not likely

  1. Would you be interested in telling a story as part of this project?

yes

no

not sure

  1. How accurate do you think the news and media represent other people who are not like you?

Highly accurate

don’t know

inaccurate

 

 

Women with Gifts!

Women with Gifts and Afflictions!  Help with the cost of Assessments. Thank you!

The gifts can be anything from artistic talent to a specialist subject but it’s the afflictions that absorb our energy, relationships and ability to cope with each day.

It’s a hard road to be on, but women with Asperger/Autism traits are on it whether they like it or not.

A petition has been started to support the women in Manchester, particularly mature women, who have chronic conditions caused by the disability, Asperger which has been holding them back through no fault of their own.

The Three Minute Theatre has an open day tomorrow for Square Circle Theatre CIC who have been awarded funds to support a project supporting these women. They need it. They are at the back of the cue when it comes to assessments. It is believed that they have coped so far, ‘why need an assessment’? Ignorance must be at large and it has been for sometime.

I learnt yesterday that I have chronic pancreatitis possibly caused by a cystic fibrosis gene or stress caused by Aspergers. Maybe both. Asperger is a NEUROLOGICAL condition. It’s relationship with depression is inevitable. These women often end up depressed through lack of support from families, friends and services supposedly available to them.

Families often have no idea why their mother, grandma and others close to them behave the way they do if they don’t know they have this condition. The person with Asperger has no idea either if they’ve had the condition a long time but no idea of its existence.

I’ve experienced a number of immediate family deaths but at each have been unable to mourn. Following these experiences my family rejected, bullied and abused me. I learnt about my condition when training as a teacher to be a mentor to a young man with Asperger/Autism which can span from few abilities to high functioning abilities. I got on very well with him. I understood him. But he was a neurological nightmare too.

Neurologically, I’m a nightmare.Hemiplegic Migraine has blighted my life. This is a genetic disorder which can mutate into HMR or Epilepsy! The genetic disorder continues. Chronic Pancreatitis is a severe digestive disorder which can be caused by a Cystic Fibrosis Gene. And just to add insult to neurons: Hydrocephalus.

Getting through each day is supported by medication and a walking aid. And without my husband, John, who cares for me because that’s his nature, I manage. Some days of course, I don’t. Being horizontal is the only option. Not good for the Asthma; which is connected to being Asperger/Autism too.

This article is not about sympathy, it’s about helping other women like me who are lonely, isolated, ill and have no information on the help that’s out there. More often than not that’s because they’re not computer literate. They need to be able to access information.

Autism/Asperger Agencies Are often online. I’ve had to be computer literate. I used to teach. When teaching you have to keep up with technological advances. The project Voices Mcr will go ahead with more passion and determination than before.

A life can be shortened by the chronic conditions cited. We need to make sure these women are helped before it’s too late!

Lottery and Square Circle Theatre are doing just that. Do support us by signing the petition: Petition. Change.org

Thank you!

square circle theatrePage 1 leaflet asperger

Details of the Project The Launch is tomorrow with the support of MP Lucy Powell and City Voice. Manchester.

hi_big_e_min_blue

afflecks oldham street

How to find us. Best Square Circle Theatre.

Contact: ginatfrost@outlook.com to let her know if you are coming. SCT look forward to meeting you.

Manchester Voices

square circle theatre

www.squarecircletheatre.co.uk

 

What’s happening in 2016 I hear?

An award from Awards for All will allow us to guarantee a project SCT has been determined to deliver. The voices of women with Autistic traits who have yet to achieve an assessment, will be SCT focus from April 1st, the launch event at 3MT in Afflecks on Oldham Street, M11JG

Wouldn’t it be grand if Susan Boyle could come and better still, be patron of the project which is a five year project. This is the first year.

Women of a certain age don’t always have computer skills which they need to research their RIGHTS! This is one of the first things SCT and its team will be helping with. ‘1:1 hasn’t gone’ is the Voices motto. 1:1 is what the members of this group need. Everything is online now. But it’s not much good to you if you can’t operate a computer for the purpose of communicating and discovering the plethora of information that’s out there.

Autism is a disability that’s here to stay. But it’s the mildest form, Asperger in older people that has gone unnoticed.The damming truth is: ‘they haven’t managed’ which is an assumption in society and a quote often read or heard.

9/10 women with Aspergers have allergies and digestive problems which can lead to life threatening conditions: for example, chronic pancreatitis can go unnoticed in those with allergies which create excessive mucous. This becomes a problem in the digestive mechanism. The Mcr Voices project leader has this problem. She had no idea the sinuses are part of the digestive system. Enough said. So you see, ‘they haven’t managed’ and this is just one example of the symptoms experienced by a mature Asperger female.

Come to the launch if you believe you’re one of these women. Contact Gina on 0161 834 4517 for more information.

We need support getting the message out there and we need to shout from the rooftops that the city centre has a social drop in facility for women with Asperger.

Thank you!

Poundsfunder Movement Manchester & beyond…

http://www.crowdfunder.co.uk/lets-move-and-shake-with-poundsfunder-movement

Just got on with it today following training this morning with Ann Strachan. It was an enlightening morning.

It’s determination and patience for this project. It’s not had a great start.

I wonder if sometimes something can be so simple: it can’t be true! But it is. I’ve given up on the funds-for-fees. The feedback from the very audience it was intended made it clear: it’s a non-starter.

Go with the flow is what I say: Square Circle Theatre is moving from strength to strength. Maybe it’s the right year to focus on the projects created for Women and girls with Autism/AD.

We’ve had interest from investors on this concept. That indicates it’s a good product. But the audience it’s aimed at, are just not coming forward.

Maybe keeping it as a concept to use for the local community may work. Let’s see.

 http://www.crowdfunder.co.uk/lets-move-and-shake-with-poundsfunder-movement the local community is a new audience. Please share if you think it’s suitable for a group in your community. Thank you

gina@manchestershakespearecompany.co.uk welcomes your questions and comments. There’s often something staring at you but you still don’t see it. That could be the answer.

www.squarecircletheatre.co.uk if you want to have a look at the website. 

The theatre company has a strong community. But this year, we need to strengthen it further. 

Emphasis on training those interested in acting without the three year degree is a building block they can use to forge their motives in the Manchester scene. Some will break in. Others may find it too demanding. But that’s the nature of the beast as they say. 

#letsgetphysical

Hello, this year’s project will support communication skills for those on the high end autistic spectrum disorder. Ages 18 to 30 are welcome to apply.

We expect to start the project week commencing 17th August and week commencing 24th August when the group will work with 15 to 17 year olds from the National Citizen Society.

We’re currently looking for a specialist in Physical Theatre and funds to support their fees. If you can help or want to volunteer to support this project then please get in touch with Gina on 0161 834 4517. Can those interested in participating in the project also contact Gina. Thank you!

Last year we supported the Creative Employment Project delivered by the Arts Council and Manchester City Council by employing Apprentices and Interns.

Your support this year is very welcome. You can donate on our website: squarecircletheatre.co.uk

Your donation will be gratefully received and acknowledged. Thank you once again.