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Progressive neuro disease diagnosis last week.

(15 Posts)
Bassetfeet Mon 04-Jan-16 19:20:30

It has taken two years of tests etc to find I have a rare neuro condition that is progressive usually . The treatment is meds that seem to have variable effect.Fatigue is awful.

My mobility and day to day living have deteriorated a lot over the last two years . Have to use a frame to walk short distance . Physio and OT have visited and I have handrails and bath aids ....this was before diagnosis .
An appt with neurologist soon to discuss the findings from neurophysiologist

I expected this but am at sea with what help I can get re wheelchair etc . Have bought one from gumtree for emergency use but it is pretty bad .
Would I be eligible for mobility allowance or blue badge if things get worse?
Money is tight. Feel housebound .DH has cancer and struggling himself .

Also while I am on the pity party pot blush any wise words on how to emotionally deal with this sensibly and without wallowing ? Hate poor me stuff. Am fairly oldish so feel very much for those younger truly . Just don't know what to do to prepare and what support is out there .
Thank you

FatherRebulahConundrum Mon 04-Jan-16 19:43:24

I can't advise you OP, just don't want to read and run. I'm so sorry you're having to deal with all this, it must be very hard. Hopefully someone will come along who knows more flowers

Hedgehogparty Mon 04-Jan-16 21:01:30

Sorry to hear this, must be very tough to deal with.

Depending on your age there are various benefits you can apply for. Your husband may also be eligible .

CAB - if there is one near you - can help with seeing what you might be able to claim.

It might also be worth seeing if there is an appropriate organisation you could contact for advice and support ?
Also if there are Specialist Support nurses you can talk to?

lougle Mon 04-Jan-16 21:08:23

I'm sorry you've had this news. You need a referral to wheelchair services. Have you applied for Personal Independence Payments (PIP)? If you are over 65 then it would be Attendance Allowance.

Pipistrella Mon 04-Jan-16 21:09:32

I imagine you would possibly be eligible for a blue badge already. I'm not sure how you apply but I wish you the very best and am so sorry to hear about this.

I hope that the progression is very slow and that you are able to live as normally as possible for as long as possible flowers

itsmine Mon 04-Jan-16 21:41:41

You need to ask your specialist nurse for all relevant info, if ot and physio have installed mobility aids you will be entitled to pip, blue badge etc and esa if you are employment age. As pp said ring cab if specialist nurses aren't available or helpful. Or, depending what neuro illness it is there may be a specialist forum online?

Ring your local council to get a blue badge application form they are easy to fill in and relatively quick to arrive (ime)

Emotionally it is more difficult. We have a family member who was fit and active and is now disabled, also I had surgery which has left me with ongoing significant issues and it has been a challenge to be resilient and positive. The only advice I can give you is to just plan a day at a time, thinking of next week/month can be overwhelming. Give yourself goals just to keep motivated, even if its having a friend round for a brew for half an hr.

It isn't easy dealing with real serious health issues when all around people seem to be sweating the small stuff. Get some box sets, drinks nearby so you aren't up and down to the kitchen. It sounds insignificant but ime when written off by chemo, settee bound and feeling sorry for myself having a drink at hand and the remote to watch a DVD can help me zone out.

Good luck flowers and wine

Bassetfeet Mon 04-Jan-16 22:44:21

Thank you all so much for advice and kind words . Means a lot .

gingeroots Wed 06-Jan-16 20:10:08

Oh Basset ,so sorry to hear of your diagnosis . Have you asked GP for advice ?

Wish I could offer some wisdom .

flowers flowers flowers instead .

Bassetfeet Fri 08-Jan-16 19:54:33

Thank you Gingeroots for kind words.
A day at a time is wise . Something to look forward to as itsmine says .
Still waiting for next appt with neurologist and hope that I can get letter to send to any agency or help we can access . No point in seeing GP is there until consultant writes to her with the diagnosis. .
I so desperately want to get out . Keep googling wheelchairs and scooters
My DH cannot push me around . Bless him .
Guess this is limbo land while we wait . So thankful for the NHS . And the doctor who doing the tests had a lightbulb moment . Love that man .
Thank you again kind mumsnetters . X

MatildaTheCat Sat 09-Jan-16 09:34:33

Hello Bassett and I'm so sorry you have had this diagnosis.

Firstly do get on and make an application for a Blue Badge as this will help you get out. For most help you can apply for they are looking at your physical restrictions rather than a diagnosis so in theory you could apply for everything before the letter from your neuro although, ime the letters do help. You can apply for PIP which has two components, living and mobility and each of them has two levels, lower and upper rate. If you were to qualify for upper rate mobility you can join the Motorbility scheme which provides transport, either cars or mobility scooters. I would put in an application straight away. The clock starts ticking from the day you apply ( by phone) and if it is awarded it is backdated to that date. The forms are very onerous and repetitive so you may want advice on filling them in. CAB and Age UK will both help. Info here

With all applications, the more supporting evidence such as letters and prescriptions you can supply the better.

If your dh is in poor health he may also be able to apply. If he is older then go for Attendance Allowance. Again, CAB will be able to advise on what you can claim.

I believe you may have previously worked fine for the nhs? If so, and if you paid into their pension, consider claiming I'll Health Retirement. Again, more forms and takes a long time but I was successful and am very glad of it.

If you are successful with PIP, you may find there are other local schemes that you can apply for: in London you automatically qualify for. Freedom Pass and a subsidised taxi scheme. There is also a cinema card which gives a career a free ticket. Unfortunately nobody actually tells you any of this, you find out along the way.

I recommend starting with PIP. From what you say I think you would definitely get something. And make an appointment with CAB or Age UK and ask for their advice.

Very best wishes and hope things improve for you very soon. flowers

toadflax Sat 09-Jan-16 19:27:16

Definitely phone up about PIP as soon as possible as it takes a while. Good luck.

Bassetfeet Sat 09-Jan-16 19:43:07

Thank you Matilda and toadflax . Going to see CAB on Wednesday .
One post .....and all this help and kind words has made such a difference .thanks Nest of vipers? Not in my world of MN wink .

toadflax Sat 09-Jan-16 19:56:58

Brilliant smile

gingeroots Sun 10-Jan-16 11:56:22

Basset - so glad people have come along with practical advice .
You've so much on your plate and it's hard to know where to go for help .

Strength to you and your DP/H .

toadflax Sun 10-Jan-16 17:56:11

Depending on where you live, there may be a LINK scheme that could help you get out and about a bit. Or a community bus that might pick you up from home.

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