Diagnosed with ppms

Hi Pat, thanks for the advice, I don’t think I have critical illness insurance. Generally I don’t wear glasses, but I will look into getting prisms though, thanks for that.

Doug

1 Like

Hi & welcome,

I thought I was PPMS for 2 years but actually more like RRMS for 14 years, oops!

This (PPMS section) is a lovely place to be, I can’t leave and think I’ll always have an affinity with PPMS’rs as I was in the club for those 2 years. I’m now trying to sort my life out! Ebay my heels and get sorted with DMDs etc.

Sonia x

Hi space jacket, thanks for the advice on the scooters, but how do I go about it? Would it be something I would have to purchase myself? As I said, I’m new to all this and I’ve no idea on getting equipment and aids to assist me.

Doug

Hi again Doug, for a lot of ‘aids and adaptations’ around the house… like grab bars in the bathroom, raised toilet seat, a side-bar on your bed to help you get out of bed, level-access shower etc etc, the OT (occupational therapy) dept can provide those for free. Your GP can refer you. Your local council funds it.

For wheelchairs, the GP can refer you to wheelchair services, again funded by local council. It’s a good way to get a wheelchair as they service them annually and replace them if there’s a problem… although sometimes there’s a long wait.

Scooters are a bit more difficult. Many of us buy our own. A lot of companies that sell them can offer interest-free credit. Also you can buy good second-hand ones from retailers and from eBay. There’s huge choice so you need to decide if you just want a small one (some of those can be taken apart and fit in boot of car) which are good for shopping, or a bigger one which are faster and can cover more rugged ground. There are even very big ones which you can take on the ‘public highway’ but they need to be taxed & are only really worth it if you live in a remote area.

You should be applying for PIP (personal independence allowance) which used to be called DLA (disability living allowance). If you haven’t applied, you need to. It’s a good benefit and makes a big difference… BUT you need to fill out the forms carefully to get it. Let me know if you haven’t applied yet.

IF you get the top rate for the mobility component of DLA or PIP, you can use it to have a car or a scooter (I’m not absolutely sure how it works with PIP as I’m still on the old DLA).

I personally think it’s not so good for a scooter as you can buy them at a good price second-hand.

Hope this helps. It’s a lot to take in!!!

Pat xx

Welcome Doug ,sorry to hear you ave joined our elite , ever so friendly, exclusive club ,looking forward to chatting soon,i am really busy at the moment sorting my 22 yr old daughters life out for her,from my bl***y bed, i am stressed out and worn out but that doesnt matter lol …

J x

Doug I had a bout of double vision ages ago about five years after diagnosis and it cleared up after a few weeks but I did need to wear glasses from then on. Never had it since but Last Christmas my eyes went haywire over some new Christmas Tree Lights Heather my wife had to replace them (I wasnt flavour of the month it took ages) it was just the bright colours and they all seemed to twinkle at once and I had to go and sit in the dark to get rid of it.

Don

Hope you get on OK with your appointment, Dont be to hard on him Head locks are allowed and arm locks are only allowed on the hand that wont be signing prescriptions did I say that. Shame on you don, I am normally such a nice placid type of fella

2 Likes

Re applying for PIP. Be warned. This is a long and demoralising process. It took 9 months from first contacting DWP to getting the payment, though they do back date it. The form is very long and details, and you have to be prepared to put down the worst case scenario. In other words, don’t be the brave soldier and underplay difficulties. The system is much stricter than when it was DLA. To get the mobility allowance, you have to be at enhanced level. I am reapplying for this, having just got standard level a year ago, and will aim to prove deterioration…it’s as if the DWP starts from the assumption that we are all con artists, trying to defraud the government. But good luck anyway! Standard rate is over £70 a week, a big help.

Hi everyone, my name is Angie. I am very new to this, so bear with me ok I was diagnosed with MS in November 2013 after 7 years of tests etc and being told it was all in my head and I was an hypochondriac. A new GP and a new referral and within a month and reviewing old tests, symptoms and new tests, my diagnosis was given. I have since been told I have progressive MS. I would like to join your gang guys as you seem a great bunch to chat to . Feel your pain for those who have lost your driving licence. Mine too has been revoked.

Anyway hope to chat to you all soon

Angie

ANGIE I collect the subs it’s a joining fee of two mars bars supplied in a plain paper envelope and once a month you send me cream cakes. DON’T mention any of this to anyone else shhhhh

Sorry it’s taken so long to get diagnosed but now you can hang a label on it you know your not going mad. I stopped driving because I knew I shouldn’t be on the road but giving up was very hard and learning not to criticise my wife who is a great driver. XXX Don

3 Likes

[quote=“LyndaT”]

Re applying for PIP. Be warned. This is a long and demoralising process. It took 9 months from first contacting DWP to getting the payment, though they do back date it. The form is very long and details, and you have to be prepared to put down the worst case scenario. In other words, don’t be the brave soldier and underplay difficulties. The system is much stricter than when it was DLA. To get the mobility allowance, you have to be at enhanced level. I am reapplying for this, having just got standard level a year ago, and will aim to prove deterioration…it’s as if the DWP starts from the assumption that we are all con artists, trying to defraud the government. But good luck anyway! Standard rate is over £70 a week, a big help.

[/quote] good point ALWAYS state your worst conditions as MS differs don’t be in denial this stuff ain’t going away if your PPMS

XXX DON

Hi Angie, sorry to hear you want to join us and that you too have had your licence revoked.

Doug

As the rest have said welcome to the club none of us wish to be in.

However we are generally a happy bunch and laughter is the best medicine.

I have had PPMS for 11 years now , if i was truthful i can no longer work full time and have to build in rest brakes but i have made loads of new friends and i do volunteering with vulnerable adults which i love so if i hadn’t MS i would still be working away, yes it ain’t perfect but it isn’t the end of the world, we are hear if you need to ask any questions.

trish

1 Like

Hi Trish, thanks for the welcome, I’ve not been able to work since November, and being a lorry driver, I won’t be able to return to that as I’ve had my licence revoked. I do certainly agree with you that laughter is the best medicine, and if we don’t laugh at this ridiculous illness that’s made us all meet and join this mad house club, we would all end up stir crazy.

Doug

Hello Surfer,

It might be worth getting some help to fill it the forms in…My local area have a service where you can get someone to come up and fill the form in with you, I found it extremely helpful. …think mine was called “Vale royal disability advice” every area will have their own disability advice service…and its not just there for the elderly, It took all the stress out of it for me, the lady that came asked me all the questions and she did all the writing, we did it over 2 sessions so it wasn’t too exhausting…when your cognitive abilities are affected as many of us on here are you need all the help you can get …believe me those forms are awful to fill in iv’e filled in many over the years for my autistic children.

Hope that helps Michelle x

This has confused me now, I do get pip but only the very basic one, as they’ve said its mainly mobility that affects me, I get £80 a month, nothing like the £70 a week you mentioned, apparently I get all the benefits I’m entititled to.

Doug

Doug, PIP comes at various different levels, depending on how disabled you are.

If you think you should be on a higher level you should apply again. A very good website is ‘Benefits and Work’. You have to join it… about £20 a year… but it’s great and has guides to all the benefits you can get. It’s worth every penny.

Also not sure if you saw it… I answered you earlier on this thread with details about getting aids and adaptations and info about mobility scooters.

Angie… welcome to the gang! Glad you found us. You are in the best place to learn more about progressive MS and find support and friendship.

Pat xx

1 Like

Hi Pat, I did see what you’d said about the aids and I have been looking into it thanks for that. I have applied for pip again now that I’ve got the diagnosis, they’ve told me it can take anywhere up to two months for the forms to be sent to me. I’m also looking into getting a scooter, as my dog needs her walks and I miss the fresh air.

2 Likes

Doug once you get a scooter you’ll never look back. They are brilliant and lots of people use them for dog walking.

Pat xx

1 Like

I’m looking forward to getting one, I’ll have more independence then and it’ll be fun.

2 Likes