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Hi, my name is Spinabif1967!
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Spinabif1967
Community member Posts: 10 Listener
Thank you for accepting me.
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Hi @Spinabif1967 and welcomeWould you like to tell us a bit about you or do you have any questions ?Be all you can be, make every day count. Namaste
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Hi. I am 52 years old. I have spina bifida, hydrocephalus, depression, high blood pressure, and chronic pain. Used to work, but unable to since 2011.
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Hi @Spinabif1967 welcome to the community!Disability Gamechanger - 2019
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Thanks
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Hi @Spinabif1967 and welcome to the community! Please let us know if there is anything we can do to help
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Hi. At the moment I'm battling with health issues, and dreading the arrival of the inevitable DWP brown PIP envelope. ESA assessment is bad enough, and I 've heard PIP is even worse
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Hi @Spinabif1967, I'm sorry your health isn't doing too great at the moment. I know the assessments are daunting, having gone through them myself! People do experience good and bad things when going through PIP, unfortunately we normally only hear about the bad times. Our community has lots of knowledge about the process so I hope we can support you through it when the time comes
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welcome to the forum, don't worry about the bad stories on here, even if some of them are from me, i failed my last one, but passed the previous 5, so not everything is bad, it's just us letting off steam, the system is stacked to stop those who aren't in real need, but sometimes they get it wrong, not that you will ever hear them saying it to you and god forbid ever put it in writing, but that aside, life is stressful enough with any illness, so don't just add another worry onto an already heavy burden to carry, for everyone who has bad stories, there maybe 100's or 1000's with good one, but they tend to not shout from the roof top saying they have passed again, as it's not an exam which tbh should be a yes or no, pass of fail type exam, it's about us being human and treated with respect and empathy, something lacking any longer i'm sorry to say with the DWP, but good luck, keep your chin up and stay strong
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Thank you both of you! Really struggling at the moment. My Dad died 5 months ago, which doesn't help... Jules
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Hi @Spinabif1967, that's not a problem at all! I'm really sorry to hear that, it cannot be easy! We are here if you need anything
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Hi @Spinabif1967
Good Evening it’s great to meet you today.
I am very sorry to hear about your current problems.
Please please let me know if you need any help/support?????
@steve51
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Welcome to the community
My son has Spina Bifida as well so I can relate. He was diagnosed in utero halfway through my first pregnancy at 20 weeks. That was nearly three years ago now.
What issues do you have? -
Urinary incontinence, unpredictable bowels, poor mobility, chronic pain (go figure, as I have impaired sensation in my legs and feet), Kidney stones, depression, high blood pressure, hydrocephalus
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My son has bowel and bladder issues too. He also has clubbed feet and uses a wheelchair for public places and long distances as well since he cannot walk independently at all. He is also showing signs of dyscalculia. Nevertheless he is a happy healthy little child who loves to keep us on our toes constantly as well as irritate his twin sister his partner in mischief making and his playmate too.
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Does his sister also have Spina Bifida?
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No. She is typically developing.
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That's great.
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Thanks.
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Hi @Spinabif1967,
Welcome to the Community. It's lovely to meet you. I have Spina Bifida too and live with chronic pain so I know how frustrating the pain can be. How are you today? If you have any questions or we can help you with anything then please just ask. All the best.Winner of the Scope New Volunteer Award 2019.
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