When I came down with PMR I was treated with pain killers and as I could hardly walk I applied for a blue badge and got one within 6 weeks at the time I was 68 so was not entitled to receive benefits its down to old age so I get nothing. even though as I run my own business I have to employ a part timer as even with pred I can not lift or carry anything heavy added to this due to a failed venture I will have to work till I drop,I am not looking for sympathy because to be honest I would not retire anyway, the problem I have is the helper takes a good slice of the profits as I am a one man business can I claim for a helper.Also will I if I am still working have to give up my badge the fact that I am a van driver it comes in very handy.If the PMR disappears then I would not have a problem I would not need a helper or a badge.
This is one for the experts out there, "happy new year everybody"
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granelliheywood
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The Blue Badge is issued on the basis of how mobile you are, which is why they always ask how far you can walk, and if you need aids of any sort - walking stick, crutches etc.. It is not based on age, or if you can drive.. but beware of the carrying parcels element.. and is issued by your local County Council Social Services Dept. It may be "very handy" but to someone who is genuinely disabled that comment is like red rag to a bull!
If you need help to perform personal activities i.e washing, dressing, eating etc, or if you have mental problems you may get Attendance Allowance, but as you are capable of running your own business I wouldn't bother even applying! I applied before I was diagnosed with PMR/GCA, and even though I was unable to turn over in bed and needed help to wash my hair and put on upper body clothing due to stiff and painful shoulders it was thrown out, I appealed - No go!
Don't get me wrong I was unable to get out of bed and could not dress myself for 5 months until they put me on pred then I went back to work and at the moment like I said even though I am working I am still disabled
No I'm not getting you wrong, or having a go at you - just explaining how "the system" looks at things!
I hold a BB, but that's because I have OA in knee and back.
The trouble is, most people processing the claims have never heard of GCA or PMR, and have no conception of what we (the applicants) are suffering. I'm convinced they have a tick list of things to look out for, and are probably advised that its a short term illness anyway - as lots of doctors seem to think!
You are not the only one who was as bad as that - but the majority of us are retired, as you would normally be, so the degree of help on offer is lower anyway. I continued working for 5 years with untreated PMR in my early 50s - but all I had to do was get out of bed and to my computer. I couldn't do many things without assistance either.
There is also the point that PMR is regarded as being something that is well managed with pred. Whilst I agree that maybe the doctors think we are better on pred than is the reality - you cannot get away from the fact that once you are on pred you ARE very much better than without. There are many local authorities who wouldn't issue you with a Blue Badge and all benefits are being cut back. I won't get into the politics of that if you don't mind.
If you go to the vasculitis forum on here they have a link to a site about benefits.
very interested in this thread. I also was undiagnosed with PMR for 5 years and GCA for over a year, (treated for TMJ incorrectly) so lucky to have kept my sight. So struggled physically for a long time (pain, fatigue and double vision). I was very active, I have my own horse and could not ride or manage stable duties. Now I have been on Preds for 7 months now, pain reduced by 80%, fatigue worse, other side effects of Preds (tremors, palpations, sweating etc) caused lots of problems, confusion and lack of train of thought etc. caused work to be more of a challenge, so honestly, I am most probably less able to manage my full time managerial role now than before, and the Moon Face caused be embarrassment constantly. I have more laboured breathing when I exert myself. Drop things constantly and forget what I am doing ..... and mood swings too ....... so if it wasn't for the risk of losing my sight, I am not sure I have gained more than I have lost ..........
I am 56 so have lots of years to work still so am struggling on but I have to admit it is extremely wearing. I did try PIP but without any joy. Really to enable me to reduce my hours or find a more manageable role - but as an employer, with my swollen face - would I employ me next to someone fit and well ? Possibly not. (realise that is on politically correct, but it is realistic).
I shall watch thread with interest .......... always interesting to see others points of view and experiences.
If you are self employed there is nothing for you no safety net no employer contribution towards your pension and no chance of taking a back seat job if you are a one man band in my experience people in PAYE think all self employed are tax dodgers if you are a cash business Taxi Driver, Window Cleaner, Ice Cream Man, etc problem is we are all independent and don't have an organisation to fight our corner unlike teachers, firefighters,civil servants who would pension them off on almost full pay no matter what age they were.
I think you overstate what public service workers might be entitled to with PMR! There are teachers, nurses and physiotherapists that I can think of on the various forums with both GCA and PMR who are also still working because they aren't entitled to retirement on health grounds, however poorly they are.
I too was self-employed so I am aware of the differences and the downsides. And I now live in a country where I can promise you you wouldn't have got a blue badge in the first place - they even look twice if you need a wheelchair here!
That's fine if the playing field is the same for everyone but in the uk it's not anyway no more political utterances from me it's not what this forum is about
GCA is covered by disability legislation so it might well be worth talking to your union rep (if you have one), Occy Health and your employer. They should be able to make so adjustments to help you work.
As for your swollen face - have a look round you! I came to the conclusion when I had hamster cheeks that there must be an awful lot of people on pred! That, or they are just plain fat - probably also not PC to say it, but what is the percentage of the UK population that is obese or overweight?
lol - that made me chuckle - I guess you are right about the hamster cheeks, its just when I look at myself .... I see someone else ......
Thanks Occy help has suggested reducing hours - employer has agreed - but has not reduced my work load -therefore still working full time! DISCUSSION ongoing .....
Yes - have met THAT before! Part timers do more than the proportionate hours ...
Not sure how to suggest a resolution there.
About the only consolation I had with hamster cheeks was that my hairdresser always makes me take my specs off! Sitting for an hour in front of a mirror was torture - I don't have a full length mirror in the house - bathroom cabinets only! Then my daughter got married when I was at my cuddliest...
That was not good timing - I have my nephews wedding at the end of January - I can't even begin to face going out and buying an outfit ..... hate shopping now ...... yes I avoid mirrors, won't have my picture taken etc. ..... but hopefully another 6-12 months and things may improve .....
" I can't even begin to face going out and buying an outfit" - tell me about it! To be fair - my daughter said "get new jeans, I want you not your clothes"! I wish I had to be honest, I did get lovely new jeans (I won't say how much they cost!) but didn't have the courage of my convictions to wear them and haven't worn the stuff I did get again since - what a waste!
However - I bought stuff and by the wedding 6 weeks later I had already lost weight so one pair of trousers fell down! Maybe...
starting slimming world next week so maybe that will help - but have gone from active to too tired and puffed to do much at all ...... jeans that would be great but not sure i would get away with that!
Why not - good nice expensive jeans and a REALLY nice top - you'll use them again too. I'm so annoyed I didn't. Italians do it. And my tailoress neighbour took about 4in out of the jeans so I'm getting another couple of years out of them. Not perfect but you can barely tell.
Careful with slimming world - be sure to make sure the class leader understands the problems of weight and pred. Many don't. Pred changes the way your body processes carbs - hence my suggestion of cutting carbs.
That's interesting - I lost 11lbs on SW literally as I was diagnosed, held on but no more loss once on steroids, leader not supportive and slowly put-on so left - tried ww - that didn't help, have put back the 11lbs back on (no more at the moment), but would say realistically I need to lose at least 1.5stone. Yes, they are very pro carbs on SW - how did you manage it? Did you manage to lose while still on a highish dose? I am currently 17.5mg .....
Weight loss is a common symptom in PMR - the increased level of inflammation in the body leads to it - so it may have been a combination that led to the weight loss. I put ON weight in the time I had PMR without pred (5 years) as I couldn't exercise. That was also after having lost quite a bit with Rosemary Conley - and getting stuck as the PMR slowed me down. I later put on a lot of weight when I was switched to Medrol (methyl prednisolone) but after about 9 months my GP switched me to a form of prednisone. I immediately started to lose weight, very very slowly but the fat around my middle started to move as I was having sessions with the dietician at the hospital. It was very slow and a very restricted diet, not least because I live in Italy, the food she wanted me to leave out were the basic building blocks of a diet I have eaten most of my life and that made it psychologically hard - so I changed to cutting carbs and kick started it with the 5:2 diet. The weight loss never did increase greatly but as long as I ate very few carbs it was steady at 1-2lbs a month. When I was eating more carbs, when we were on holiday in the UK for example, where I had less control over what I chose to eat, I didn't lose, back to my normal diet and the weight loss started again. Hence my belief the low carb aspect is significant.
I lost about 17kg (38+ lbs) over 2 years but have been stuck for some time now. I was at 15mg pred when I started losing weight, I'm on 5mg now. I suppose after 3 years I'm far less strict with myself - it would be nice to lose another 5kg but i've struggled with my weight for most of my life so I doubt it will change now!
But as I say - most diet club class leaders do not have the background to understand the role medication can have - they blindly believe the "less calories in, more calories out" view of weight loss.
Attendance allowance is awarded for help you may need in the day or help you may need in the night.
The fact that you are able to work would be evidence that you don't need help day or night with care needs .
I was unable to dress, undress, or do anything for myself for two months and had to take 4 months off sick .I have returned to work as like you at 61 am entitled to no benefits .
I would not be considered for PIP as I would not score any points and yes it is a question and tick box system they use.
Have you considered State Pension I assume you have paid National Insurance you may be able to also get Pension Credits on top and this may give you entitlement to H/B if in rented accommodation and Council Tax support.
As for Blue Badge it is renewable every 3 years and information is supplied with changes you need to inform them about when you receive it;
As for your helper I can not help with what may be available to pay their wages but it will not be any State Benefit.
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