My condition

[Binababoo]

I am diagnosed with CBD and I want to learn more about it

Any tips?

[Bargiepat]

Stay positive and try to do all the things that you love.........

Also go to the gym if you can and stay active,

Good luck and this place will certainly support you on your journey.

Patrick. XXX

[Binababoo in reply to Bargiepat]

Thanks for your wishes

I will try to follow your suggestions

[Bargiepat in reply to Binababoo]

It took me a few weeks to come to terms with my diagnosis, so my suggestion of being positive will be hard to achieve in the early days.

[rriddle]

See details from our recent conference on PSP and CBD:

brainsupportnetwork.org/201...

And see our list of top resources for CBD on this webpage:

brainsupportnetwork.org/edu...

[skoe]

Please contact the PSPA HELPLINE in U.K. 0300 0110 122 . The team there will provide information on living with CBD and PSP

[Kevin_1]

Hi Binababoo

As someone has already said... PSP helpline.

The next bit is grim, sorry, but it may give you peace of mind. Get the following in place is you want them: (I am assuming you are in the U.K.)

A will

An advanced decision - This is a document that tells the medics what you want in various situations - Age Concern have some good articles on this.

Lasting Powers of Attorney - One for Health and Welfare and the other for Finance - These make statements of how you want your affairs to be managed when you are no longer able to manage them yourself. They empower a named person (pseople) to manage your affairsd on your behalf.

Lastly it is important to get a good support network activated around you. O.T.'s, Physio's in the earlier stages and to try to stay one step ahead with care planning. So that you know equipment you might need before you need it.

The last tip is perhaps to stick around here. The advice we received, from those further down the line than ourselves, kept us on top of the issues and gave us a better quality of care and life.

I am so sorry to hear of your diagnosis and hope that you like many others, still have plenty of time for good experiences and sharing with those who matter to you.

Wishing you the best

Kevin

[raincitygirl]

Hello Binababoo,

I too encourage exercise. My husband received a diagnosis of CBD this year and the neurologists said physical therapy "wouldn't help" - but we are doing it anyway, and finding it helps with his "alien limbs" (left arm/hand and left leg). He is about 4 years into it and is still able to walk (slowly), is eating well, and while coughing, he isn't in distress.

He has lost 95% of his speech, so I also suggest you plan ahead for different ways to communicate when speech is difficult. That's our hardest task, but we've worked out "codes" and we're doing ok!

And keep posting your questions, worries, etc here: there are very experienced and caring people who have a lot to offer - even when just a long-distance hug

Anne

[Binababoo]

Thanks dear

[Aprilfool20 in reply to Binababoo]

Hi Binababoo, I too was diagnosed in June this year but stayed in denial till I saw the last consultant who is putting me forward for a ‘dat’ scan to rule out or not Parkinsons. It still won’t be that conclusive,Ihave read,

Meanwhile this last fortnight has been very challenging, my legs have been like jelly,I don’t seem to have much strength, and I seem to be plagued with shakiness deep inside. Not that it shows on the outside Don’t know how you are doing,but anything similar? My GP has put me on a short course of Diazepam to counter the shakiness. It does at least give me a good night’s sleep and gives a bit of respite for a few hours in the day,

Meanwhile just playing the waiting game. Can’t do much till Xmas is over then will have to get cracking on an action plan. Hubby still finding it hard to come to terms. Hope you have some support. I have been given some exercises by the physio, but hard to apply when feeling so wobbly. Follow kevin_1 as he seems very knowledgeable. Also raincitygirl very supportive. I’m in Norfolk,England for what it’s worth.

Jayne

[raincitygirl in reply to Aprilfool20]

So Jayne, what happened with the DAT scan? How are you now?

Anne G.

[Aprilfool20 in reply to raincitygirl]

Hi Anne,

Thanks for your concern. The Dat scan confirmed low dopamine levels so my consultant has diagnosed mild Parkinsonism but does not want to see me till August. He says I could still make old(er)bones

However, I am now weaning myself off the beta blocker bisoprolol which they put me on after my heart attack. I would not wish the withdrawal symptoms on my worst enemy! Have now dropped down to 1/4 of the tablet I was on and I do feel better, not so depressed. Unfortunately my strength is no better but my walking is not so jerky-not dragging my left leg and I can move a bit better. Apparently it can take up to 18 months for it to clear my system once I stop taking it-playing yet another waiting game. You never know the problems I have may be drug related -eternal optimist!

Meanwhile we are just taking each day as it comes. Off to Corfu in 3 weeks after which I should be off the drug. Looking forward to a week in the sun at our home from home!

If things don’t get better then we will have to accept the inevitable and see how things progress.

Very best wishes

Jayne

[raincitygirl in reply to Aprilfool20]

Will stay optimistic with you

Enjoy your trip!!

A.G.