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Thread: The right choices ???.

  1. #1
    Forum Member pete's Avatar
    Join Date
    Oct 2011
    South Staffs

    Smile The right choices ???.

    After much thought over the years since was diagnosed with MND ,it became clear to me that despite the popular belief that the professionals that are supposed to know all about this very complex group of diseases ,that ultimately will cut short your lifespan, actually don't know as much as they think they do. I was undergoing tests at the time for speech slurring ,no one was certain ,despite a series of tests being done twice , then referred to a specialist unit that dealt with MND only.

    The tests continued for months ,however a very forward SALT told me and the bride to make the most of 2010 Christmas because in her opinion ,I wouldn't be seeing anymore !!!, we left the hospital in silence ,deep down I wanted to go back and punch her in the mouth ( I was brought up not to strike a female ),for being so totally heartless towards my wife's feelings, but the better half calmed me down , since then we have gone on each day doing things I am able too

    ,I am writing this for those reading these forums looking for what their future may hold should they find themselves in a similar position, I cannot stress enough that we are all very unique individuals so assuming you will follow anyone else in your progress is very doubtful , you will do as we all do, whatever it takes to live each day as best you can ,the outcome is unknown by anyone but yourself, the doctors will advise on statistics and data collected from those who have gone before and your health at that time,it's by no means written in stone so do what you can while you can.

    Wee have reached the point ,despite many many promises of assistance ,non have actually materialised , yes we got a power chair but no way of getting it in or out of our garage without someone around to deal with ramps.

    As the disease has progressed most daily tasks are difficult some just impossible without both specialised equipment or major alterations to the house, as for equipment we have a shower chair purchased by ourselves ,the simple task of getting in and out of bed is both difficult and hazardous, as for tuning in bed that's very difficult . To date despite many visits and promises no help has been offered , so with little choice left! we have decided to spend our savings on moving to a bungalow nearby! this will wipe out all of our savings , but will make life easier at this time and no remedial work to our old house for the bride to deal with after I shuffle off .

    The money spent on our house has been largely wasted as we had done so much to help with access and putting everything right that needed to be ,so the bride didn't have nasty surprises . Social services have been noticeable by there total absence . But according to the locals who know the benefit system inside out ,once we have no money left, then we can claim for almost everything ,not the way I wanted to be ,but If playing the system is the only way then so be it . By the way the advice on benefits came from a family who's son has mild asthma, however they have the latest SMax,all the five kids have better iPads than me and no neither parent works , other than looking after four other kids, God I love this country .

    Best wishes to you all

    All I need is a miracle

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Not sure how too reply Pete;

    I have a similar story, SALT not much use and think that I would have a better quality of life if we had no savings. I would then get travel to free day centers and other places but because we saved we have to pay for most things. We would get free help at home and alterations done. But I am still trying to save a few pennies so that my wife has a little when I leave.

    I choose to save for my old age, not the right choice for me.

    We all make mistakes, well people that actually do things do.

    Best wishes to everyone, Terry

  3. #3
    Forum Member
    Join Date
    Sep 2011
    Same for us too.
    We had no help from social services, we applied for a disabled facilities grant but was told we do not qualify. I had to take a loan out to have a wet room built on. Thank goodness for our family ,as between them we have a lovely room, despite the fact that they are not builders/ plumbers/ electricians or roofers.
    I am unable to apply for carers allowance as I earn too much (12.500) whoopee.
    My husband does not qualify for mobility allowance because he draws a state pension.
    The only help we have had is from MND Association who have provided my husbnad with a clos o mat loo. This has been an absolute godsend. They also provided a rise and recline chair.
    We applied to wheelchair services and was told that he did not quailfy as he does not need it to get round the house. he can just about manage to walk from one room to another. I thought the idea of a wheelchair was to be able to get out of the house.
    The last time he left the house was boxing day, unfortunately by the time I had got him out of the car he was so weak he could not negotiate the two steps needed to get in the house. His legs gave way and I had to call the emergency service to help me get him upright. His arms are completely useless so he cannot help himself bless him.
    I have been told by countless people that i should stop work then I could claim . It really isnt right is it.

  4. #4
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Louise;

    You have been hit by a double whammy. The idea that older people don't need mobility help. You should be able to get a wheelchair though. Contact Mnda connect and they might well push your case for wheelchairs along with his OT and maybe the hospice.

    Not sure whether it would be better financially to give up work, a lot depends on savings etc. The other thing is work can be therapeutic for you but you have to balance everything up.

    Regards Terry

  5. #5
    Forum Member
    Join Date
    Jan 2011
    Westhoughton, Bolton, Lancs
    Hi Pete,Terry & Louise
    We have been very lucky with services over the past 6 years, at the beginning we felt it was all a bit premature to be thinking about house adaptions but an OT we had at the beginning was pushed by our Physio to come out and pre empt what we would need our Original Physio Jane was really on the ball with everything and by the time the adaptions were done Mick couldn't walk upstairs anymore, she also contacted the armed forces to get them to help pay for the Grant part we had to subsidise so we were not out of pocket. The next biggest hurdle was probably hoists, ramps wheelchairs and then CHC, we were handed over to Hospice OT and Physio by Jane so that they became hands on earlier rather than later and have never let us down, we feel that Jane hand picked how they were going to handle Mick's condition although that probably wasn't how it was. When we had the CHC meeting I was really concerned we would be turned down so with the Hospice OT Jacqui we put together evidence for everything they listed on the internet that was needed to succeed, and then she came with the Hospice social worker, Physio, herself and the district nurse, and led the meeting from the start. I truly believe having a great team behind you gives you trust, & hope. We had a few hiccups along the way but even down to our GP who just calls in to see how he is doing all helps. I do however feel that where we are at now though is a sort of stalemate where it all seems a bit of a mystery of what he may need next, or what else can help. There isn't much help out there for Mucus plugs,than the equipment we have, nothing more for his breathing than his ventilator pressures being altered his speech is failing him and he is nil by mouth, so even his SALT can't help us too much now and his frustration and anxiety just increases on an daily sometimes hourly level, so where do we turn to now,just keep going and smiling as much as possible I suppose and try and have more better days than bad days. So sorry you all haven't had the support that we feel we have had, and like yourselves I still work and we are penalised for that too . It should be standardised throughout the country for one an all not a postcode lottery. xx Ang

  6. #6
    Forum Member
    Join Date
    Dec 2013
    We have largely been fortunate with support from OTs, hospice and other professionals. No- one has proffered a prognosis so I can only guess from how quickly things are developing. That's fine though, all the stats are online, we don't need pros to keep quoting them.

    However, I do think MND is an outstandingly inconvenient disease. And despite having good support, fast diagnosis and an inurance policy, there have been times when things could have been so much better.

    I think funds are seriously lacking. Whether you are retired therefore aren't expected to need to move from your recliner all day, and can spend your pension on caring, adaptations and a car or have a family and spend money saved for a holiday or the family's future with little chance of replacing it, or alone and foot the bill yourself etc, the resources needed to support individuals with MND can be as devastating as the illness itself.

    It's the way it is. Can it be improved for future generations of MND sufferers? Perhaps we should write to our MPs or Cameron.

  7. #7
    Forum Member
    Join Date
    Sep 2012
    Hi Pete

    Remember Pete, free is never free, I may stand to be corrected, but I think it may be the same in your country as in mine. It certainly sounds so unfair, and the injustice of it all, but don’t go against the grain of who you are. You’re a man of dignity, honor, and high caliber as we all can clearly see from your posts. You spent a lifetime providing for yourself and family and the fact that you are still doing just that in how you plan and prepare and live it each day for yourself and those you love regardless of mnd, alone speaks volumes of the man on this forum we call come to love, respect and admire (especially me)

    You’re the best
    CC xoxox

  8. #8
    Forum Member
    Join Date
    Jan 2012
    Interesting thread. I was astonished when we were told there would be no help towards the adaptations. Without a full occupational pension between us we had some savings to compensate. We had to spend 30k on adaptations , car etc. We ended up spending 30 k from our modest savings. Money that will not bring replaced but, having recently lost my lovely husband I want to celebrate :

    Free prescriptions
    Free wheelchairs and hoists
    Access to many skilled and experienced therapists
    A wonderful GP
    A great palliative care specialist
    Free nutrition when PEG fed
    Free home care and respite once through CHC
    Free incontinence service
    2k from MNDA
    Access to advice from MNDA
    To say nothing of friends and family support.

    A lot of thanks due.

    A lot needs to be done.


  9. #9
    Forum Member
    Join Date
    Dec 2010
    Hi Pete,

    On the other hand, I think you are making a smart move putting your capital into property so that you may claim your free entitlements. I would suggest keeping a buffer supply of cash handy when the entitlements don't materialise. I agree that the tax and benefit system penalises thrifty folk.

    I can echo your sentiments about the care professionals who largely do not comprehend MND. There is no incentive for them to comprehend MND. They get paid equally for good or poor care.

    The number of posts that link hospitals to deaths of our friends is a scandal. There are many that have died as a result of being transferred in and out of hospital. Hospitals have no comprehension of how stressful it is.

    Meanwhile I have done 18 months now. nuff said for the mo.

    Keep your chin up Pete, as long as trouble n strife is ok, you r missin nowt!

  10. #10
    Forum Member AP1978's Avatar
    Join Date
    Aug 2013
    Pete, sounds like your having a rough old time of it. Our OT's etc were also useless and it took us ages to get anything for mum. It was like a full time job ringing people and arguing for things. It's not right at all the way some people get treated. An example of how the system is so wrong, my mums sisters husband was diagnosed with terminal cancer the day before my mums funeral, he's declined rapidly with walking and their ot ordered them a stairlift, it was fitted within 1 1/2 weeks, we had to fight for a lift and it took 8 weeks to be fitted, my dad and brother were having to carry her upstairs as the house is tiny and it just wasn't feasible to have the bed downstairs. I'm glad my auntie succeeded in getting the lift for my uncle but where was the justice in that for an mnd sufferer, it seems to me like they're sometimes at the bottom of the list!
    annette xxx

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