Just introducing myself.
I am 55 & have been diagnosed with PD for 12 years. I showed symptoms for 3 years earlier. I have been fortunate so far but now the disease is beginning to take hold.Uncertain about the future. Unemployed for over 3 years with wife the same (she had 3rd nervous breakdown in 8 years ).Living on savings (spent £70k in the last 7 years just to hold onto what we have). Can not go on like this much longer.Mr Cammeron's party's decision to strip both of us from our ESA benefit costs us nearly £800 per 4 week period.I am keen to get back into a working environment.It is essential I do or we could lose every thing we have left.I am a qualified Accountant & have had some good jobs in the past.These days I cannot get work as a bookkeeper. My age is a big factor but the PD is the icing on the cake. There is mass ignorance as to what PD actually is. Do not want to sound too negative. Usually very positive but even I have black days.There is a sense of hoplessnes about our situation this time.For the first time in my life I feel vunerable & a victim. Any potive help out there ?
Thanks for coming here and welcome to the forum.
I'm really sorry to hear the struggles you've been having with ESA. We are worried that this may be happening to many people with Parkinson's. We're having a Q&A on this topic with an expert later this week.
In the meantime, do give a ring to the benefits adviser on our helpline at 0808 800 0303. He may be able to offer some advice and can assist you in finding out if there is any financial help available to you.
I'm sure that others in the community will also pop in to say hello and to offer support to you where they can.
Welcome to the forum, I am sory to hear you have so many problems and I understand what a worry everything is as my husband was only just into his forties when he had to give up work, I was already disabled and unable to work and we had our son still in school. There will be many people on here with the same concerns, so it is all a matter of getting all the facts on benefits and any other help you can, apart from the helpline and benefits person at national office there is also the CAB which will help you through the whole process as will of course the Information Support Worker for your area. I can remember the constant worry we felt until it was all sorted out and we moved to a bungalow after a couple of years to reduce our mortgage. We have managed quite well for all these years (22years)mainly because we took out insurance policies when we were younger to coinside when my husband was due to retire, so of course they helped when they eventually matured. We haven't been able to have holidays for years so that was another saving, we tried to enjoy days out or lunches with friends which when you are at home all the time gives you a break. I hope you manages to sort everything out as then you won't feel so stressed which in turn will be better for your PD.
Sorry I can't give you any other helpful infomation.
best wishes to you both
Welcome aboard. I only dip into the forum occasionally but never fail to be uplifted by the amount of support out there. You are right about the ignorance of people. But its not there fault. We all have to get out there and educate them. Sometimes I think there is so much emphasis on finding a cure that we forget people are living with the Parkinson Beast now! Your accountancy skills would be in great demand from any charity who are all crying out for Treasurers. OK, it wont pay any bills but it would give you a sense of satisfaction and keep the brain working. It would also show you have kept your hand in and probably supply you with a reference if a job does come along.
Have you appealed against the benefits decision. Always worth a try. Speak to the benefits hepline to get some advice & get the PUK support worker to come and go through it with you, if its not too late.
Can you take in a lodger? a certain amount (something over £4,000 pa, I seem to recall) is tax free. You might even be lucky enough to live where there is a 'homeshare' scheme (Its run by a housing association; they pay a bit less in rent and help you out.)
All the best, Chrissie