Some days are good, some days are bad

[stalbans]

First diagnosed with bsb in June this year after head scans all sorts of blood and spine tests then full body scan , Nothing then the savere shakeing and stifnes started psp he said now at times afeel bad and toss and turn at night, its bot possible to walk on my own . What next

[tisha1953]

Hi StAlbans, i have been diagnosed with CBD since 2 years. Last year my symptoms deteriorated and my walking has got very stiff with little coordination on the right side, this reduces my movement in my Right leg and hand. I see my neurologist every 6 months at Hemel Hempstead. You sound like you are having a rough time. I Have slight tremors in my right hand but only when i am stressed or tired. It is very frustrating when you cannot do the things you take for granted. Keep intouch on this sight and be rest assured you are not alone, this is a wicked decease so we have to stay positive and live life to the full as much as we can. some deteriorate quicker than others, some have had it for a very long time. I am 60 next month and have had symptoms for at least 5 years, only just my walking getting worse. Take care Tisha x

[shasha]

hello - i too have psp dxd since november but before that they told me i had PD -

oh how i wish it was as there is nothing they can do drugs wise to help us

[mummybear]

Hi Stalbans i noticed your question, i'm sorry to say no one can really state what phase or stage your at, the doctor told me last stage due to some reasons he didn't tell me but i guess they have to do with eyes and where they are fixed, swallowing, and mobility. Also i think if you have a little bit more dementia as in forgetting family milestones ect. It's a impossible disease that keeps everyone guessing, you can look up stages of psp and see what you find on Google if you can see, but my advice to you is get all your documentation sorted now as later on you may not be able to think straight, so wills, medical directives, power of attorney and guardianship as they are much harder to talk about or do when the disease advances. then forget about them and do all the things you want to while your still able and forget about the disease as much as it will let you. with you in spirit, regards Mummybear

[stalbans in reply to mummybear]

Dear mummybear thank's for the sound advise I was thinking about power of attorney