Beat the odds

[blazyb]

So many people have said to me that I shouldn't believe the statistics regarding PSP. It is normally a statement made based on faith and emotion. I, of course, understand this, but as a CPA and a logical thinker, it has bothered me. I have now realized that I can also logically refute the statistics, and I am fast coming to the view that they are completely and utterly irrelevant for me on a logical basis. It has taken 5 weeks to get to this place. fightingparkinsonss.com/202...

[DaffodilPrimerose]

Blazyb, thank you for your blogs. I pray that you will get a long, long time to keep going because your work is valuable and valued.

[timbowPSP]

Thats interesting ......but depends on what stats you speak about. You know there are 8-10 types of PSP? Seems Richardson-Steele is a quicker developer against 'Parkinsons style.' I am 83 yr old male diag 7 yrs ago, and still chugging along, but slower! Guess I may be the Parkin's end of the scale.

Or maybe you refer to other stats?

Does PSP affect you at all, and whats ur remedy? I have 6 A-4 pages of info .... will send if ypu pls give me ur personal e-address. Best wishes TimbowPSP

[daddyt]

I am still defying the odds 10+ years later.

Tim

[blazyb in reply to daddyt]

and long may you!!! thanks

[brandysuki]

great I fully agree with you. Keep up the good work. X

[Bergenser]

so a story to add to the range of expectations - my mother-in-law was diagnosed with Parkinson’s Disease around the time she turned 50. Her physical symptoms progressed quite quickly and her voice was small. She had some bad falls, struggled with side effects of the drugs, and the doctors started talking about atypical Parkinson’s. The working theory was Richardson-Steele i.e. “probable PSP”.

The neurologist (James Rowe) followed up with all the cognitive tests at regular intervals. I first met her about 12 years later. At this point she could still come up with 30 animals in a minute - or words starting with ‘f’. Her memory and cognition was spot on - except when she had the slightest infection, when she would hallucinate, lose her ability to walk and to swallow, and the drugs would get out of balance. The doctors thought she had outlived the prognosis and started questioning the “possible PSP” part, but still felt she was quite frail.

I had the privilege to know her for 19 years. By then she had cognition problems, but was still living in her own house (with live-in carers) and was still eating, drinking, enjoying (short) visits and making decisions daily. She had attended her children’s weddings and that of her oldest granddaughter. She had seen the arrival of three great grand children and was the centre of every family occasion. The final celebration was her 82nd birthday. She walked (with support) from one chair to another when she wanted to sit by the window.

Two months later, she passed away - quietly, sitting and watching her garden after breakfast, with a carer to chat with.

The brain had been donated and the final conclusion was Parkinson’s Disease (after all). She was a much loved woman and beat the odds for 3 decades.

Best wishes xx

[blazyb in reply to Bergenser]

I can't tell you how much I appreciate this message. Would you permit me to publish it as a blog on its own because it sends such a powerful message. I know there are many stories of pain but this is truly a boost for people like me and not just wishful thinking. Thanks