Agoraphobia - desperately searching for the one person we need, can you help us?

[Letsgetmumout]

Hello all :)

I am new here! I have come in a desperate search of anyone who can help. We are looking for someone who can come out to treat my Mums Neurodevelopmental delay at home. We really think this is the key to conquering my Mums agoraphobia, she hasn't left the house since 1999. Our story is on youtube but it won't let me post the link here :( anyone kind enough to watch can search 'letsgetmumout' on youtube.

My mum has had many treatments for agoraphobia and there have been improvements, but the thing she can't get rid if is the disorientation. It is believed that getting rid of the Neurodevelopmental delay will remove the disorientation which my mum finds so hard to deal with. If anybody on here can help, please email: letsgetmumout (@) gmail.com

Is the person we are looking for viewing this site right now? We sure hope so :)

Thank you so much guys, this means the world to us xx

[Annie0904]

https://www.youtube.com/watch?v=2EhaF7Q7A2w

I think this is the link to your film. I really hope that you can find someone who can help your Mum.

[Letsgetmumout]

Annie0904 thank you SO much! I really appreciate you sharing that, we all do :)
We won't be giving up anytime soon :)

I would like to add if anyone uses any form of social media and would be kind enough to share it, that would be wonderful. We are hoping to spread the word! Thank you everyone :)

[Annie0904]

I will share it on my face book page :)

[Letsgetmumout]

Fantastic! What a warm welcome to this site! :) xx

[Annie0904]

I am just a little older than your mum and would have been gutted to miss my childrens graduations. I get really anxious about going places but I can get to most things. I really hope you find the help for your mum. There must be someone out there who can help her so that she can get out again x

[Letsgetmumout]

How long have you been Agoraphobic Annie? Have you found anything that has helped you a little? Before 1999 the last time my Mum left the house was when I was born (in 1990), and that was a real struggle for her. It's not just my graduation she has coming up, it's also my brothers wedding next year so I think that has really given the boost to start trying to get out again. I'm so proud of her, for everything she has been through and for remaining positive throughout. I know one day we will find the right person who can help us, especially with kind people like yourself helping to spread the word. Do you have OBD/NDD too? Xx

[Annie0904]

I have General Anxiety Disorder and PTSD. I don't really consider myself as Agoraphobic although I did go through a time when I didn't want to leave the house because my anxiety was so bad but it was really bad even in my home at that point and I just wanted to hide in bed. CBT has helped me and so has Intense Psychotherapy. I still get little blips now and again but I am mostly okay now and going to Malta on holiday tomorrow. :) I have shared your link on facebook and my friends are sharing it too :)

[Letsgetmumout]

I see. That's great that you're off to Malta! Big pat on the back for you :) Again, I can't thank you enough for encouraging people to share our link :) have a wonderful holiday! Xx

[Annie0904]

Thank you, I am a nervous wreck about getting there but will be fine once I am there :)

[Letsgetmumout]

You can do this :) x

[trish1955]

Hiya just read yr post which got me loo,king to see if I would benefit by this treatment I ave suffered since I was 12yrs old and over time its got worse I to am house bound with zgraphobia my heart goes out to you and your mum I no the heart ache of missing out on tns kids stuff like when mind were in school play and I could not go or when they asked mums to attend school outing ect so many things were about do you live I live in Nottingham and now searching for s therapist to but what kinda therapist do they come under tell your mum son one will give us the key to open up how world let's hope its soon xxxxxx

[Letsgetmumout]

Hi Trish,

Thanks for looking at the link. It wouldn't surprise me if you would also benefit from treatment for OBD/NDD as it seems to be closely linked with Agoraphobics. We are in Hertfordshire. I'm not sure what the type of Therapist is called but I know there is a clinic in Chester where they have therapists who treat this successfully. My Mum said there is an online assessment you can do for it at I pop.org (although I'm not sure how reliable this is as my Mum was diagnosed personally at an old clinic in Hertfordshire over 20 years ago). It's a shame they moved to Chester as I think the additional distance kind if made her 'give up' trying to get there as she never felt it would be possible. I know that my Mum, yourself, and many others on this site will find the right person and achieve what you want :) we just need to continue to search for that person x

---------- Post added at 12:51 ---------- Previous post was at 12:50 ----------

*inpp.org that was supposed to be!

[Rain]

Hello,

I read your posts and watched the video which I thought was very good and very moving. I know nothing about neurodevelopmental delay I’m afraid but I do know a lot about agoraphobia.

I am two years younger than your mum and have suffered from agoraphobia and severe social anxiety for thirteen years.

I would be careful not to get too hung up on believing that ONLY one path can lead to a cure. It was 20 years ago the ND was diagnosed so it probably would be a good idea if this was re-evaluated. Agoraphobia in itself causes disorientation. When I’m forced to go out I get very disorientated. Sounds seem extra loud; cars seem to whiz by too fast and too close; the sky seems too low and threatening; I feel I will fall. You get the picture.

I have had lots of treatment-psychotherapy, hypnotherapy and cognitive behavioural therapy. But at the end of the day no one can go out FOR your mum. To beat agoraphobia you have to ultimately go out.

I avoided going to the dentist for years because I couldn’t face the waiting room and worried I would freak out and have a panic attack in the chair. I still have all my teeth and very few fillings. One day I had pain so bad I forced myself to go to the dentist. He said my gums were not in good condition and I may need to have two teeth removed. The fear of losing the teeth was greater than the agoraphobia.

By putting one foot in front of the other and accepting I had to go, I managed to keep going to the dentist and since then have had deep cleaning done many times. I get very anxious when I go but I haven’t died from it yet. I am now confident that I can cope with the dentist and I wouldn’t think of missing an appointment again as I am delighted to still have all my teeth. Practice has convinced me that I can do it.

My next goal is to go on holiday to a self catering cottage not too far away in 2015. We will have to share the garden and pool with the family in the cottage next door so this is a big challenge for me. I am spurred on by the recent death of an old friend which reminded me just how short life is and that it comes with no guarantees. I want to swim in that pool and by hook or by crook I will.

Please don’t think I am in any way underestimating or belittling your mum’s problem. I haven’t been in a shop for nine years so I am far from cured. But I am learning that determination, acceptance and practice can get me places that years of talking to therapists can’t. You have to be open minded about trying the smallest step. I don’t believe in miracle cures. Don’t put all your eggs in one basket. The way out is through.

Maybe going to Chester is too much just now but perhaps your mum could practise a short car ride to start with. My wish for your family is that your mum makes it to your graduation. Just like in the wizard of Oz, the answer is within her. Good luck.

[trish1955]

I know what rain saying is true I an say it all day long I have gone out to the shop with my daughter I use to go have tea with my daughter every Friday but to be honest I would spend all my time holding my self together so as not to panic at my mums she eighty by GI d I got ho e I was relieved and ore out from fighting with the constant anxiety that was rushing round in my body to be honest this is gnd reason I now go no were not even my daughters next door I get up in a morning and bang ten anxiety is there so my body goes in defence mode all day and stay that way till bed time xxxxxx

[Letsgetmumout]

Hi there,

Thank you for he responses. Rain, thank you for your honest reply, it's great to hear how well you are doing, it really cheers us up to know other people are conquering this :)
My mum had ND confirmed again 2 years ago. She is very much in the mindset of trying to get out, especially with my graduation/brothers wedding coming come. My mum had had an abscess on her tooth about 8 years ago and she was in agony but still couldn't get to the dentist. Eventually a call out service managed to come home, they were fantastic, even bought an x-Ray machine with them. My mum is also on 24hour oxygen (a separate issue) and she has become seriously ill before managing to go to hospital, she only did it then be chase she was barely conscious. It terrifies us, she could have easily died, her oxygen levels were in there 40s when they should have been in the high 90s, she was blue etc. This is how hard she finds it.

She has made some small steps to success eg: going into rooms in our house that she didn't use to and sitting on the doorstep to the garden etc. we know this might not work but we feel we can't leave any avenue unexplored.

Thank you everyone, for the replies and advice, it's gratefully received. I hope one day we can come here with a success story and share our findings with anyone else who might find it useful xx

[sandra49]

hope you get your mum some help. I am sad to say that I missed 2 childrens graduations...however my life picked up somewhat and with medication I attended the 2 weddings and christenings of my 2 grandchildren. I am still not great on my own but I do understand anyone with agoraphobia. incidentally my own mother had this complaint(she had had a lot of stress in her life) wish you all well. sandrax

[Letsgetmumout]

Thank you Sandra49, I'm glad you have since managed to achieve attending weddings and christening, that really is brilliant :) my Mum unfortunately missed her second grand child's christening last Sunday, but we remain positive about the wedding. I know my graduation is going to be the next miss, but that's life.
My Nana is very highly strung, on edge etc but does not seem to be agoraphobic, it could be connected though. Just got to keep spreading the word :) x