john

[laila123]

i have had aletter from the mp regarding the support that we dont get with psp my husband death certificate has he died of pspwhich im going to use if anyone out there wants to help me highlighting this i would be gratfull im sad since i lost him and feel as if i have to fight for others

[easterncedar]

Bless you, Laila, for trying to help the community while dealing with your own sorrow. I'm in the US, but wish you the best with your efforts. Thanks for your graceful example. Peace, Easterncedar

[abirke]

Dear Laila,

I, like Easterncedar, extend my condolences. And yes, you can gain strength through helping others. We all will be fighting that fight soon whether through PSP or some other life-taker. To help others find solace or a way to solve a problem is heroism. thank you.

AVB

He gives power to the faint; and to them that have not might he increase strength

Isaiah 40:29

God is our refuge and strength, a very present help in trouble...Psalm46:1

[york]

I'm in the UK but don't know if I could help but would certainly try

[vlh4444]

Thank you Laila. I keep meaning to write to my MP but never it never seems to quite get to the top of the pile of things to do! It is certainly very frustrating that we do not qualify for lots of the 'help'. At the moment I am fighting a battle with the Wheelchair Service a they don't seem to be able to provide a suitable wheelchair for D. They say they will only take the needs of the patient into account and not the needs of the carer (the present one is too low for me to push and too heavy for me to lift into the car). This is ridiculous as D would not be able to go out at all if I didn't take him! We also don't qualify for motability help to get an adapted vehicle as D was over 65 when diagnosed although he had PSP before that. All very frustrating and adds worry and difficulty to an already impossibly stressful situation.

Anything you could do to draw attention to all this sort of thing would be a wonderful contribution. Thank you for trying!

Vicki

[laila123 in reply to vlh4444]

yes they came to me and i demanded they give him one with a high back so it tiped back i run a centre for people with bennifits and othe things pleas put the name of you social services and i will through the book at them i feel sick to the stomache that i have had to fight for jhon but i made a vow i will help others please let me help you they make me laugh still not picked jhon up

[Amilazy]

Many condolences Laila, his fight is over, hopefully he is at peace in a better place. Now it is your turn to do all the things you had planned. I agree with getting MP's involved in getting to know what carers have to do at great cost to themselves, I have had discussions in past with my old MP little impression but our new one is a GP so may get some more assistance though he does seem to be more interested in hospitals. why not contact your local PSPA group and see if you can help. Again many condolences and good luck for your future. Best wishes Tim

[Kolton]

Hi are Yu in Canada ??? By mp Yu mean member / parliament ??? I'm in Ontario

[Amilazy in reply to Kolton]

Hi Kolton, Brit sorry, MP same meaning to both of us but different parliament. Best wishes Tim

[hellebore]

Hi lala. I am sorry for your loss you seem now to be in the angry phase of grieving. All that stored up anger from when there was a more important priority. I could throttle those people who think they are helping but have no idea. My GP says " and we must look after you" and what happens nothing. The social worker retired and we had one phone call to ask what our income was. Over £16k in savings so we haven't heard since. If F had cancer there would be loads of help. I am seriously contemplating not allowing science to have his brain just to make them realise that they need to put more effort into research. This selection of syndromes is going to become more common. There is time bomb ticking. Please look after yourself and take time to go through your bereavement it's a natural process. Oh and if you can KICK ASS.

[KatherineParr]

Check out Richard Rainwater, Texas billionaire and entrepreneur. His family is putting in funds for PSP research. As Helebore says, kick ass, but don't let it drag you down. Health helps to fight better anyway.