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Ankylosing Spondylitis Man
United Kingdom
เข้าร่วมเมื่อ 18 พ.ค. 2012
Hi
I have Ankylosing Spondylitis, and have set up this channel to help raise awareness of the disease, and share my experiences to hopefully help others who also have A.S.
I also suffer from depression and anxiety, which were both diagnosed very soon after my diagnosis with A.S. along with epilepsy which I have had since my mid-20s.
I hope you find my videos useful, and please feel free to subscribe to my channel for future videos.
Thanks!
Ian
I have Ankylosing Spondylitis, and have set up this channel to help raise awareness of the disease, and share my experiences to hopefully help others who also have A.S.
I also suffer from depression and anxiety, which were both diagnosed very soon after my diagnosis with A.S. along with epilepsy which I have had since my mid-20s.
I hope you find my videos useful, and please feel free to subscribe to my channel for future videos.
Thanks!
Ian
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I loathe this disease. My biologic just quit after 2 years.
My son is autistic and im now persuing an AS diagnosis for myself lol (I also have crohns disease)
❤❤❤❤❤
Great video❤
my right hand thumb is twitching from last night what can I do in that situation.
i get enhanced PIP for the past 8 years i recently reviewed it for the 2nd time, clicked no change and still have another Phone assessment. Why ?
Decline the phone assessment just say anxiety too high
@@Vibethelife then they will 100% stop my PIP
Hi there would you be able to give me some advice please. My whole reason for applying for pip was to get enhanced mobility so i could get a wheelchair or mobility car has i have diabetic neuropathy where now i can not stand or even walk now as i have no feeling in my feet just in my heels but i cant stand to long because it puts alot of pressure on my heels. And i made that very clear when I had my assessment , i was awarded enhanced daily and standard mobility this was june this year. I was told not to challenge it at the time as I could of risked losing the pip i was awarded so months on now i can’t leave my house to attend doctors or hospital appointments. Do you think i should tell pip this or ask my doctor to write something stating the issue i have . Take care
If vouchers are introduced. They will only be able to be spent on certain things. That the government decides.
Yes, that'll be the way. Money out, then straight back in.
Have u already heard about TMS? U dont belive IT could be the other way, that actually Mental conditions cause the chronic illness?
The Magnetic Therapy? Yeah, it seems it's still not used very widely, but if it works, it works.
@@AnkylosingSpondylitisMan No, tension myosities Syndrom. Mind Body syndrom
Hey! DWP disgust me. My pip is being reviewed. I sent forms in June this year. I wanted an update as its now October. My forms got scanned in July and I'm told a 52 week wait. 1 whole year. Its disgusting. I've had enough. 52 weeks. Sorry, I just had to share with somebody!!!!
That's absolutely ridiculous! I know what you mean about sharing, sometimes it's good to have an ear that will listen & share your feelings. Rant as much as you need to here! 😊
😢
❤❤
❤😢.ممكن الترجمة
Thank you for sharing. I have A.S and im only 9 weeks into my injections and I have now a roaring tooth infection and I start antibiotics today. Which would have been my Injection day but I was told to not take my Injection until after the antibiotics are finished. Because the antibiotics will not work if I have biologics in my system.
Ouch! Sounds nasty! Yes, sounds like good advice from your doc.
So can you just put in the renewal form same as before on most of it?
You only need to put any changes on the renewal form, plus any new backup documents
@@AnkylosingSpondylitisMan so if I just put nothing had changed on 99 percent of it will my money get stopped or will it stay the same?
It'll stay the same
No the way forward is to understand that we are the same as everyone else but need extra help Just leave us alone & carry on paying us our PIP money stop getting in to our business People shouldn't judge they don't walk in our shoes The same way working people have money to spend on what ever they want We that are different should not be restricted to vouchers Labour party should be cast out There going to be war if this goes ahead & it won't be sweet Putting restrictions on people lives is totally wrong & degrading We allowed choices like everyone else it's our human right
Totally agree - cash system just seems to be the easiest for us beneficiaries.
Stupid idiot.
Who? Me?
@@AnkylosingSpondylitisMan who else.
@@philstabler can I ask why you keep on commenting on my videos, with less than helpful remarks?
Not good idea encouraging government tell u what spend money on ad universal credit don't even check what put in journal always late like been cases where people declared earnings took nothing months them took lot left them skint but I can't see them switching vounchers unworkable need stop subsidizing banks which raise 55 billion within 5 years tax wealthy instead going after poor disability benefits always grow as aging population people become unwell or disabled at some point which be accident at work or diagnosed hole purpose of welfare is safety net
Totally agree, unfortunately the government look like they want to reform the whole PIP process, so this video is basically an idea they could use so that PIP claimants aren't worse off.
im not sure if you are trying to be offensive to people with disabilities but your on benefits yet this idea of virtually money going into a persons universal online record that has no banking services attached but you want to send virtual payments to utility company's so really they never get a payment of anything from your household but in return you want to never pay tax again in return for this idea but you dont pay tax now and how do you pay for direct support for personal care and direct payments to have my shopping bought and returned with the care worker via a taxi this is among the other hundred reasons why virtual or vouchers will never work
I'm not trying to be offensive, I have disabilities myself, and I am also on PIP & other disability benefits. I do pay tax, yes. And I have paid tax for all of my life. The 'never pay tax again' was a bit tongue-in-cheek (the idea popped in my head from the film 'Armageddon') I agree that a voucher system will never work, so my idea is purely an option so that at least we have the option to reduce our utility bills, which we all have to pay.
people like me who pays for everything via support i dont leave the house i have no online benefit place to see what i have as i have no internet hears what my life is...direct payment to a daily support worker who only takes real money, then a daily support who will use real money to buy my daily fresh food meals cooked for me dinner and tea also is paid in real money not virtual in fact anything i get from PIP is used for my support on a daily basis my bills come from my benefit so really if changes are brought out then they must cover everyone in the changes to include myself who has agoraphobia, auditory hallucinations by sycosis which is voices telling me to kill 24/7. i also suffer from deep anxiety among other mental health issues, so do you see my needs being met with the option of virtual money idea?
People I know on pip don’t seem to have mobility issue when there is a need for more fags. To make it worse using a car provided by PIP 💩🐽
Not sure what you mean? They have a mobility issue, so are given a car? That would mean that their PIP money is all used as the contribution to the car, what they then use it for I guess is up to them 🤷🏻
Fake news
What part do you feel is fake news?
How about instead of focusing on stressing out disabled and ill people, we tax the rich? No more billionaires, theres a top level of how much you can hoard, and after that the money gets diverted into, health, community, transport and green projects. That would reduce public spending, ensure that all kids had 1 hot meal a day. This black hole the governments is banging on about would be solved. Also, we can stop sending money abroad and keep our oen house in order, cos we have our own issues currently and need to spend more in our own homeland.
Agree 👍, apart from foreign aid - there's a very good reason for that. Yes, we have domestic issues which need looking after and funded, but sending £millions abroad can often save us £billions if we didn't send that money. Basically, it's the lesser of two evils.
@@AnkylosingSpondylitisMan u have just stated,the government, wants to put people on vouchers system, the labour government has not even , stated that, you either a bot or disinformation agent, id refrain from talking bullshite , or you will be reported to the information commissioner office, or the standards hours , or even the police, using deception, as your tool, what my come under the influence off , disability discrimination act . There is definitely something suspicious about you.,also arrival if the human rights act.
Thank you for your response, I think you've commented on another of my videos? No, I'm not a bot, hence the actual videos I put up of me, talking into the camera, I'm quite real 😊 Not sure how to reply to your comment, not sure what you'd want to report me for? Passing on information is sharing, and sharing is caring. Anyway, here's the latest news on PIP possible changes uk.news.yahoo.com/latest-dwp-plans-swap-pip-073135127.html
I don't want to buy goods in places I never go to. Again he is looking out for his friends that bribe him
Totally understand 👍
I think you're missing the point here. The last government wanted to stop all new PIP claims as they were told by some body that PIP claims were due to increase by 40% in the next 10 to 15 yrs. If you replace PIP with vouchers for apparatus useful to your disabilty etc, then what happens after that? you get no more help? or does your PIP claim get cancelled once your deemed suitably equiped out to cope with your disability? You can't award someone a benefit and take it away at the drop of a hat.
The Green Paper on PIP reform had a few proposals, one was 'Moving away from a fixed cash benefit system.', which was what I have focused on in this video. Your question about what happens after that is exactly why the voucher scheme won't work.
What are you on about???
The government are potentially changing PIP cash payments to voucher payments after a review due to increasing costs.
I have epilepsy and Complex PTSD and the idea of vouchers is the most ridiculous idea. Can you use vouchers for a taxi or trains, meds, therapy? I don’t like the idea of virtual money either. How about stop people on universal credit taking the absolute piss there are so many sketchy claims. What if you don’t live on your own or you live with parents? Should I use my pip to pay all service charges?
Universal credit is a system that can be manipulated by the beneficiary & definitely needs to be looked at. If someone lives with their parents, they could effectively 'sell' the utility bill discount to them.
@@AnkylosingSpondylitisMan that is so convoluted and if you’re selling your virtual money and living with an elderly parent it could well affect their benefits. I think providing funds allows for the most flexibility. Particularly for someone with multiple conditions, why are we looking to make the lives of people that need support with problems such as epilepsy, autistic spectrum disorder, complex ptsd and I’m victim of domestic violence. All this does is make an already extremely difficult living conditions and make them worse. Just to clarify I’ve worked for 24 years and I’m aged 40. I’ve worked and paid high NI and 40% tax for the last 15 years. It grinds my gears and this new government grinds my gears. This government is penalising some of our most vulnerable citizens and mean while the immigration figures are out of control. How about telling all but those claiming asylum to escape war or political asylum must return to Europe. Maybe spend some money on patrolling the channel effectively. And, that all potential asylum seekers must do so outside of British territory, so all those arriving illegally will be immediately deported.
@LeChimp-jg6fh Im in total agreement for keeping a cash-based system; my idea is an alternative to the voucher scheme, which is ridiculous. The idea of 'selling' it is literally an idea - it's all ideas; of course the government would try and stifle any way around it. Alternatively, the younger generations who are not house owners/renters can continue with their benefit (equivalent to under 16 version of PIP) I'd like to say that immigration is a very small issue in the grand scheme of things. A lot of these people are equally as vulnerable as those on PIP and certain disability benefits, so would have to be ALL treated equally. We need to start putting the 'human' back into humanity 😢
Easy solution rich people shouldnt need to claim pip yet they do
That would be a very easy solution, but it would then be a question of where does the threshold sit? At what point is someone classed as rich?
@AnkylosingSpondylitisMan I don't know what the threshold should be but a millionaire shouldn't get it but they do
@@AnkylosingSpondylitisMan No thank you. My PIP is there specifically to serve my disabilities. It was originally set up by Margaret Thatcher in the 80s (as DLA, Disability Living Allowance) to compensate disabled people for the lack of accessibility in society. Rather than make entrances, stairs, telephones, signs, transport, buildings, vital services and amenities accessible, disabled people were paid a sum of money to purchase our own solutions-ramps, braille typewriters, time with sign language interpreters, etc. Apologies for my straightforwardness, but having my gas bill paid won’t bridge the gap between trains & platforms or create more than one seat at either end of a train for colleagues, friends or couples to sit together just because they happen to use wheelchairs. It won’t allow us to purchase our adapted council homes so we can get on the property ladder and create intergenerational wealth. For once the problem is not wealthy people oversubscribing to PIP; no amount of disposable income brings the front door closer when the entry access buzzer to your child’s school is installed at the top of a flight of stairs. There isn’t a shortfall in PIP, only a shortfall in justice & understanding within government especially, and society as a whole.
Makes it easier not easy,so carers and cleaning ladies are going to accept vouchers,not a chance
Vouchers would be a nightmare for everyone, but with my idea, you would still use normal cash.
Dont forget to like and subscribe!
Don't forget to like & subscribe!
Full video is here th-cam.com/video/vgiQ5rxZhlM/w-d-xo.htmlsi=2shy8rfY99z45Yyp
The
Dont forget to like & subscribe!
Dont forget to like & subscribe!
Don't forget to subscribe & hit that like button!
th-cam.com/video/jGTxfExhvNA/w-d-xo.htmlsi=Ow_WLyGeiwOMbcIA
Yes. Correct surround yourself with the right people otherwise you will not get the right help. Go private if you can afford it.
Brand new app - lifewithankylosingspondylitis.ihub.app/home?postTypeId=whatsNew
I’m actually in need of surgery and I’m afraid that the disability check won’t cover the cost of living. If u are not working how did u get financial help?. Thanks
Sorry to hear that you need surgery, I hope it goes well. Are you in the UK? If so,, you may be entitled to PIP & ESA. Contact the Department for Work and Pensions & they will be able to advise you.
How am.i going to pay energy bills with vouchers
This is exactly the problem, it's becoming ridiculous 😔
I have had my pip review my came back with lower amount i will allways have epileptic fits i cannot remember how long they last for as i live alone and i have liver problems and other problems as well they have also reduced my esa as well this has made my fits worse now i have had two today my friend was here at the time i had the two fits
So sorry to hear that, seizures are awful. You are entitled to a mandatory reconsideration, so you can always push for that.
same here, i have ankylosing spondylitis and i deal with this pain its horrible, i also had open heart surgery when i was a baby. the pressure on my ribs is immense
😔
I did my first injection 3 days ago and I already feel the decrease in pain. I feel like it's to good to be true.... I hope it's not
It can be a game changer!!
What you r taking in that injection???
No
Coffee ladies and gentlemen, ever since I started using it I get random twiches. If youre drinking it, try stoppong it for a few days. It will go away.
Always good advice to reduce caffeine 👍
Como conseguirla gracias
This brain fog, do you find that you keep forgetting things all the time,like in a few seconds, because I do I thought I might be getting Alzheimer's bloody worrying
100%. I can be mid conversation & literally just stop & not know where I was. It can be like a disconnect between the brain and speech.
Did you say what the hell 😂
Lol, probably 😂
Did you say what the ****
Lol, probably 😂😉
International court of human rights.the argument being,if its not ok for working people to receive payment for work with vouchers -then why is it ok for the disabled?
It's a very good point you make, there will be so much uproar if it goes ahead, and anything like this will be open to abuse/forgery.