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pete
12th November 2013, 16:49
If living with MND wasn't enough ,why on earth do folk make everything so damn difficult, Yes I am going to have a Rant, Normally a laid back sort of guy , and just making the best of a bad situation, Nothing is easy to either arrange or get done in any time scales that are even sensible.
Like everyone else at some stage along the way we need to change things to adapt, Now for some reason Things take on an impossible feel, We have had the Social Services around looking at the ramp situation, that's as far as that went, seen no one since ??

The powerchair was going to be ordered so I could use it externally until the ramps were built but as no one has been back in three months getting a ramp is very unlikely this year ,as is me getting in or out of the house now ,as my legs struggle with steps ,we have those both front and back doors Oh Joy .

So thinking ahead we decided to change our Car to a WAV, that was signed for on the 24/10/2013 ,we were assured everything was in place ,sadly not ,we get at least a phone call every few days ,from a young lady with a strong Scottish accent, asking for more information and can we ring motability, can we ring DVLA, as for some reason the six or seven forms I filled in when ordering the car were not sufficient , Now I have always emailed any company explaining that I have no speech and the only way I can communicate is by texting or email, For some bloody reason that's not understandable to anyone ,neither is the need for any haste if they reply it takes four days !!!!, what the devil is wrong with folk ,I cannot speak is simple enough to understand so why ask me to phone anyone ,And what can be wrong with anything we already have a motability car, we have informed DVLA and I have a new three year licence issued after I informed them of my condition ,Undertaken a driving assessment test to show I am capable of driving ,sent copies of my results to all concerned and still that's not enough.

Just debating now to cancel the car and stuff the lot of them ,no one tries to make anything easy ,just putting stupid obstacles in your way ,just about everything we have has been sourced by ourselves ,the stairlift , Profile Bed was paid for by us we have fitted grab handles at various points were needed having waited for weeks it was just easier to do the jobs I could myself while I can. though it took a considerable time to fit them ,,was worth it !!

That's about it , feel much better and off to sip a very large brandy and coke ,and eat some pork pie, hope your having a less stressful day than I have had so far, and thanks for listening to a very grumpy old man who has been created by a system that seems hell bent on making almost every simple task a nightmare.

Terry
12th November 2013, 18:30
Well I hope you feel better for that Pete;

I to have trouble with communicating, I have written emails to people, even the police,. saying that I can't talk so please email your reply, only to have the phone ring and someone speaking to my wife about something that she has no idea of.

We had another person from the Abby National say that I should get my wife have power of attorney on the phone after they made a mistake with my ISA's, that was two years ago.

We asked about ramps and they could fit one in but it would need a flat area, and because of that and the slope of the land it would have to be dog legged. I got the temporary ramp and had a bracket made up for it to fix it permanently. It is about 5 feet long and works perfectly.

I often look at the Mobility scheme and wonder if it's worth it. I have bought my own second hand one and it has been good. You can alter your own one to suite, I can now open the front window from my wheelchair in the back. Very handy when wiffy shuts me in and goes shopping.

My advice to everyone is to try to get things sorted before you need them.

Try to relax and get back to them, Terry

john
12th November 2013, 18:48
Hi Pete,

All drives you mad doesn't it. They act as if this is not a progressive illness and the way you are today will be unchanged going forward and we know that isn't the case. Even the people who deal with the illness on a regular basis seem oblivious to it's progressive nature.
We bought our WAV from the Scottish people and it all seemed to go seemlessly and we got the vehicle in two or three weeks. Are you there now? Just waiting for a delivery date?
On the ramp front have you considered portable ramps. We bought a pair and used them to get Irene into our own and other people's homes. I have a pair in the attic gathering dust. They are about a metre long folded and then have a telescopic section so unfolde and extended are about 2.5 to 3 metres long.they are pretty robust .you are welcome to them and I can parcel them up and post them to you if they will help until the builders re appear. Pm me if you are interested and I will get them on there way.

John

miranda
12th November 2013, 20:28
Oh Pete. So rarely do you have a rant. But quite understand your frustration. Hope your pork pie washed down with the brandy has eased the situation. I have had a good day - saw the physio who is going to send me some Range of Movement exercises (they have previously been mentioned on the forum) because I am definitely getting more aches and pains and the joints are stiffening.

magic
12th November 2013, 22:02
Glad it was not me for a change. You can feel that either you or the agencies are in cloud cuckoo land. Have you asked MND Connect to help you cut through the red tape? Hope tomorrow is a better day.

Magic

Frank
13th November 2013, 00:55
Is it 'ramp season'? ;) Or are we all getting to the same stage?

I came home to a letter that was hand delivered. This kindly informed us that 'there is no money' for a grant to allow us to get a ramp installed?
No explanation of why, or if I can appeal.
So it's another day of work, to go back down to the council, unpaid now, as I've had too much sick leave.
I get to sit with the mothers with 'pineapple hair styles' and their screaming brats, who get money thrown at them, just to leave the building.
That's the answer, I going to get the worst little sods in the neighbourhood to come down with me and give the lad behind the desk a storming migrane :rolleyes:
Sod working for a living and paying my tax and council tax, I must be grazy.
I think the worst thing is, I only went down last week. I sat down and wrote everything down, not that they'd understand my grunts. The last thing they said was 'we will come and assess you'. Not, 'we will come and reject you'.

ccinjersey
13th November 2013, 01:41
For Pete, and those of you in need of a bit of cheer!

http://www.youtube.com/watch?v=B3FzW5vQUm4

As you can see I really do have a 'Big Bird' connection! LOL Whatever we have easier access to here in US, and it can make my Forum Friends life a bit easier, let me know, will send your way, as long as it can be shipped thru customs will send it :)

CCxxx

Frank
13th November 2013, 02:14
Cheep Cheep. lol
Nice one CC, got to smile at that one.
xx Frank

magic
13th November 2013, 08:53
Frank, please do not fall into the spiteful thinking of the gutter press. Blame the bankers or the incompetent politicians, contact MNDa, speak to your local councillor or MP. It is an easy get out to blame the vulnerable and very negative. Before you think I am sitting in clover, I have had to spend our retirement money, that was saved over decades, to pay for my husbands ramps and adaptations. I will soon face retirement with very reduced income and no savings.

Magic

Laila
13th November 2013, 12:49
Hey Pete,

Exploding is not a good idea. As my old karate teacher said during training after I'd had an operation 'take it easy. .... as we don't want to have to clear up the mess '. . Nice man that he was :) Carol

Terry
13th November 2013, 13:30
Hi Frank;

There might not be the money left for that work this year but they should have a new budget come April. They should have some emergency money that they might allocate.

Many OT's or social services have Temporary ramps that will do the job so it's worth pursuing, as my one is better than the permanent one that they suggested.

Pete, I was sorry to hear that you paid for your bed, grab rails and stair lift as I was offered all of those items from social services. I did not follow up the stair lift as I moved down stairs.

As Carol said, try not to explode because of the mess and also it does not do the neurons much good.

Hope you both get something organized, Terry

DaiTheDragon
13th November 2013, 13:35
Whenever someone tells me it's going to be simple I know that means it's going to be over complicated and involve a lot of swearing on my part.
Nothing to do with this illness is bloody simple

David

Frank
13th November 2013, 15:38
Frank, please do not fall into the spiteful thinking of the gutter press. Blame the bankers or the incompetent politicians, contact MNDa, speak to your local councillor or MP. It is an easy get out to blame the vulnerable and very negative. Before you think I am sitting in clover, I have had to spend our retirement money, that was saved over decades, to pay for my husbands ramps and adaptations. I will soon face retirement with very reduced income and no savings.

Magic

It was 'tongue in cheek' about the 'pineapple mothers' Magic. I come from a very working class family with strong socialist morals.
I should have used a few more smilies, but I was writing it on my phone and my fingers were all over the place.
I was trying to do my 'outraged Daily Mail reader' act and obviously was a bit too good???;)

All people have problems and they are as valid, if not more so, than mine are.

I was more frustrated with the system and the fact that simple notes and instructions can not be passed from person to person, over a very short period of time.

All I'll do is sort it myself, with the help of family and friends, where necessary

The only 'let down' is that all these people offer help and say "come and see us" to arrange support; so you do and then you get knocked back.

Not a problem! I never asked for their offers of assistance in the first place.
It's about 'them' making 'themselves' feel valid and needed.
Again' not a problem! Just don't waste my time, as I have better things to do. Like building a ramp:):)
xx Frank

Frank
13th November 2013, 15:48
Hi Frank;

There might not be the money left for that work this year but they should have a new budget come April. They should have some emergency money that they might allocate.

Many OT's or social services have Temporary ramps that will do the job so it's worth pursuing, as my one is better than the permanent one that they suggested.


Hi Terry.
Yes the OT suggested one of these temporary ramps a while back, but it's not really suitable for the back.
It's a strange layout with a few undulations.

'The front' is like climbing Everest, I've not even attempted 'The front' (read with sinister music in the background) in months.
Even the OT fell over the other week attempting 'The front' ;)
I couldn't stop laughing :o, but I blamed it on the mnd when she gave me a stern matronly look :rolleyes:

magic
14th November 2013, 05:20
Frank I am so relieved. You were convincing and I am a great believer in, 'to ignore is to condone', so had to rap your knuckles. Live up the road from you. Are you under Leeds?

Magic

Frank
14th November 2013, 05:52
Frank I am so relieved. You were convincing and I am a great believer in, 'to ignore is to condone', so had to rap your knuckles. Live up the road from you. Are you under Leeds?

Magic
No worries Magic. I had the 'out-raged bigot' down to a tee when I could talk, and I forget how hard it is to express nuance when writing ;)
We are under Calderdale, just outside Halifax. But I work in leeds, just off the motorway at Hunslet.
xx Frank

magic
14th November 2013, 09:13
My first home in Leeds was in Hunslet"
Gerry

Frank
14th November 2013, 14:01
It's not a bad spot, to say that it's in the middle of the city.
I work on Moor Road and it over looks the old lake that was filled in to create a bowling green. The old steam railway is at the end of the road.
So some days it smells nice when they stoke up the engines.
I've certainly worked in worse places :)

pete
14th November 2013, 16:09
Hi Frank,

The comments on your post about steam engines, bought back memories of when i was a kid, all my family apart from me worked on the railways , The old man drove Steam trains all over the country, both brothers were Firemen and the older one went onto drive Diesels later on ,just dont know if my dad ever forgave him that!!,but i can remember vividly standing on the footplate trying to stoke the fire , god i loved that smell of steam and the bacon and eggs cooked on the shovel ,great days

pete

Frank
14th November 2013, 19:50
Hi Pete.
Yes, I no what you mean. Strange thing is tho', we lived near the Worth Valley line and it never smelt as good as it does in leeds??
Must be down to the water:rolleyes:

Talking about great aromas, I still think it is hard to beat the smell of wet wood burning in the stoves of tied up narrow boats on a really cold brisk morning.
It is one of those smells that also brings back memories of being young.
We were lucky to have both rail and canal very close to home.
xx Frank

magic
14th November 2013, 20:47
Frank, used to live in the Arthingtons and was part of a movement to stop them being demolished in the seventies. Lived in both the street and terrace. Small world.
Apologies to other readers!

Magic

pete
14th November 2013, 20:55
Hi Magic,

Don't have to apologise for using the forum ,MND has other areas !! so please carry on its nice to talk about other things for once .

Steve
14th November 2013, 21:52
Just seen this thread, I'm having a right job at the minute trying to get ramps sorted. The council recommends a company locally so we had someone quote the first week in Sept, big salesman, suited and booted all the patter and BS, I'm still waiting for that quote.

In the meantime the steps are becoming more difficult and I took a tumble last week. Why are people so unreliable? To cap it all off we planned to extend out back to kill two birds with one stone, access and sleeping / toileting. The planners have knocked it back as they don't want to open the floodgates to similar applications.

I'm sat with a beer!

Frank
15th November 2013, 02:10
Magic, I literally look at both Streets from my office window. Were you there when the track was still joined the main line?
It must have run less than 20 yards from your door step.

Steve, I think I would have a word with your MP in your position. It may help getting your local paper involved.
What you don't want, is to end up being a prisoner in your own home, just down to access.
I hope the beer was nice :) I've just had a Jack Daniels through the peg. It sounds stupid, but if I burb, I can taste it the same as if I drank it.
I don't think I will tell the nurse what I've done though :eek:

pete
15th November 2013, 13:03
Morning everyone,

I had hoped to not continue with my Rant, but as things just seem to be getting worse daily, here goes, Well I heard from the company who we ordered our WAV from! saying the DVLA had rejected our application !!!!, and could my wife contact the DVLA to ask them for permission for motability to see the information they where refused ???, Now as my wife phoned ,we must have been lucky after two hours of trying on the phone ,a guy actually answered, as the wife explained our problem he cut her short saying firstly they didn't reject applications, and they needed to speak to me ,now not sure if he was deaf or stupid, or both my wife explained I couldn't speak due to MND, twice before he rudely cut into her query, but he gave us an email finally, so I sent off my request, Yes nothing heard since ,informed motability and they said it could be a number of reasons why the DVLA had refused the information, I don't care just want to know the reason in this case!!!, And cannot understand as we are existing customers already why are the DVLA involved as motability already have all my details on file , so bugger all has improved" The ramp situation is really annoying because six months ago I was able and willing to build my own ,but was told this would be done by the social services and needed to be done to HSE standards. ??? Yes well like the others on here once again despite all the promises and what's available to you, pretty much all Bu****it, and just hot air and the workers doing what they do best SOD all! apart from form filling. Several weeks have passed now no sign of the power chair, no sign of the builder who is council approved and that means incredibly expensive !!!, the one person who was very prompt calling was the grant advisor who wanted to know just about everything ,as I pointed out it was me who was disabled, me who needed the work funding, nothing to do with my wife or what money she had , quite upset she retorted it was both parties financial status taken into account, I re typed well if that's the case does my wife get back all the money she has spent on me since I had to give up work and if she was required to fund my adaptions at least in part ,how would she manage once I shuffled off ,a shrug of the shoulders ended out meeting as I asked Lynne to show her the way out,,,!! Makes you smile that it's not just MND that adds to the suffering ,we have to put up with crap like this , so in all no problems really as I can't get up and down the steps easily now no point in bothering about ramps as I don't have the wheelchair ,and what's the best saving is no point in having a WAV without a wheelchair to put in it as the push job is pretty much no use with one arm weaker you just end up going in circles ,just like dealing with the organisations who are supposed to help !HUMBUG, that's my rant over folks, have been reading all your posts , and knowing it's not just me is no comfort, just makes me so annoyed that this is the way things are towards the Terminally ill, Anyway have a great day keep posting ,have loads of time now to read them all .

Pete

ccinjersey
15th November 2013, 14:20
Good Morning Pete

So sorry that you and your wife are going thru this nightmare. Honestly I don’t understand, and can’t begin to comprehend how such an injustice and disservice is happening to those who are in need most. There always seems to be such bureaucracy in all managed health care plans even here in US, but this seems to me to be a whole other level of incompetence, and a severe lack of due diligence.

Again, if there is anything I can send to you to assist your medical needs from the States, just let me know will do my best to get it to you, and promise won’t ask to speak to your wife or have you fill out the another form! :)

Your American Friend Always
CC (a few of Debbie’s hugs and kisses are in order, and sent your way xoxoxoxoxoxoxoxoxo)

Jangobie
15th November 2013, 14:53
HiI Pete, you deserve to rant about all that is going on. It is so frustrating that at a time when you need help it feels that every barrier possible is being put in the way. If only it was a level playing field across the country it seems that some people have it a lot easier than others. I know how strong you are Pete, and you are always the first one to give such good advice to everyone else. I hope that at least some of the problems will sort themselves out soon for you. Thinking of you and Lynne.XX

pete
15th November 2013, 14:55
Hi CC,

No worries ,I took my good health for granted ,and for most of my life ,was incredible fortunate to remain fit and healthy , and yes read about the odd case that managed to get into our press over here, thinking it was a isolated incident ,but the more you read off the suffering made worse by the ones who are supposed to be there to support those who are in dire need of assistance,

I am fortunate not to be one of them at this time, just so bloody frustrated and annoyed that this sort of half hearted attitude is everywhere within our care system , and the promise of help that does not materialise are worse than the bold faced rejection . At least with a No response ,you know were you are. Just regret not doing more ,while I was fitter and tell the so called professionals where to stick their assistance . What adds to all this ,there really is no one fighting our case ,to get things improved other than offer more advice , You have a great day CC ,take care.

XXXXXX

ccinjersey
15th November 2013, 15:40
Yes, it does seem your healthcare system could be in need of patient advocates and patient representatives. Working in healthcare for so long, will say these people really do help patients. They do make the entire process run a little smoother with much less confusion, frustration and anger for people. Like everything else it always seems to come down to budgets, bureaucracy and politics, and very often ’who you know’. Sadly there really is no place for any of that in any healthcare system, especially when time is of the essence when it comes to one’s own medical needs and attention.

As you said you’re a lucky man indeed to have had good health in your life. Continue to stay strong minded, things do have a way of working out. In Bid Bird's own words 'cheep, cheep, chirp, chirp' :)

You have a great day as well :)
CC xxx


Xoxo CC xoxo

john
15th November 2013, 18:57
Hi Pete,

Sorry your tribulations continue. I used to raise my voice at people on Irene's behalf but it made no difference. I began to think the whole system runs on bugets and they were hoping Irene would die before they had to spend the money. Maybe unduly cynical but it certainly left you feeling that way.
It is a great shame the mnda do not see this as a useful role they could play on behalf of the people they represent and exist to serve. They will no doubt remove my post for voicing criticism but things don't seem to get any better and with reducing government spending I don't think it will any time soon.

john

mjp
15th November 2013, 19:35
Hi Pete,

Sorry your tribulations continue. I used to raise my voice at people on Irene's behalf but it made no difference. I began to think the whole system runs on bugets and they were hoping Irene would die before they had to spend the money. Maybe unduly cynical but it certainly left you feeling that way.
It is a great shame the mnda do not see this as a useful role they could play on behalf of the people they represent and exist to serve. They will no doubt remove my post for voicing criticism but things don't seem to get any better and with reducing government spending I don't think it will any time soon.

johnI also have a problem trying to get any help i have funded every thing my self my ot and the rest of staff ihave come into contact with not interested. I was lucky to get good pension to pay for it all but it will run out before long. I believe that i am just a figure on there books.

ccinjersey
15th November 2013, 19:39
John, your post brought to mind an HBO documentary about physician assisted suicides which is legal in the State of Oregon if you are a resident there. There was a man who was terminally ill with cancer, and received a letter from his insurance company stating that they refused to continue to pay for his chemotherapy treatments, but would pay for the medication used for the assisted suicide. It raised an interesting debate, ultimately the man sued his insurance company and won.

What I found most disheartening that this poor man battling an illness, also had to battle a system for his basic rights to live, when his focus should have been on his remaining quality of life.

CCxxx

pete
15th November 2013, 19:49
Evening John, Hope your keeping well these days.

I am thinking along much the same lines John to be honest ,let's face it ,once you are diagnosed ,that's pretty much the end of interest to the experts ,and from then on you get whatever treatment for the results of progression, and most if not all that's offered was developed for other conditions and is given to us to try out ,very little in my experience has been of any use in my day to day life , so with a limited future there is no rush to find a cure or treatment as we number so few in the grand scheme of things ,not really surprising so few know about MND it's not exactly on a par with adverts for Save the children, Cancer research !even sick Donkeys and Dogs get more air time than we do !!!! , just out of interest has anyone ever seen a advert on national TV seeking funds for MND ,other than Sarah's Ezs one which in my eyes didn't relate very well to what I live with daily , Still I can see why we fund India's space research and the two million sent to pay for Syria chemical clean up, far more important things to spend money On ,than a few folk in the UK , so no bad feelings really, just lost for words!!!.

Regards
Pete

magic
15th November 2013, 23:02
Share your frustration Pete. I took phased retirement to gain income to help replace savings only to discover that 'they' ignored my earnings but counted all my pension! P now on CHC but a lot do money gone adrift. It does beggar belief that, with all the people involved with this disease, there is not better guidance for us. The timing is crap.you spend your savings at a time you are unable to work to replace them.

Magic

pete
16th November 2013, 15:44
Hi Magic,
Hope your ok and Peter is still coping with life's hurdles, It is purely frustration as you know from your own experience , What I cannot understand for the life of me ,is why because I have been diagnosed with a incurable disease, and the medical world have so far failed dismally to find any treatment , Then Why is it my wife ,, like you will have to live with what money you have managed to save over the years suffer and scrimp with what's left from savings and whatever pension you get, all because the powers that be somehow think it's right to Leech money off the partner , however if you have not bothered to save , plan ahead you can end up getting it all for nothing, and advisors who make certain the you receive every possible benefit known to man . I feel so sorry for those younger than myself ,who are finding themselves in this situation as I can see the service only getting worse as the endless cuts within the NHS leaving it unable to offer what is needed .

Pete

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