We just returned home (it only took 4 1/2 hours to get home) and we are exhausted. My husband does the driving and he has a terrible head cold. I had all sorts of testing today which exhausts me along with an infusion of the study drug. I found today that my memory was horrible! The neurologist did say they have received approval to go into the second level of the open label, which is great news. Hopefully they are finding out some info on PSP. I know I am better in some areas but worse in others. I had the eye exam by the neurology ophthalmologist, which I hate the exam. My eyes hurt during and afterwards and the back of my head hurts too. My vision isn't improving at all yet. I sure hope it does, as I really miss being able to read. I love to read. I really hope this trial medication works for PSP. It would be nice to have something available for those who will be the next victims of PSP. I really hope to be able to write that we found THE drug to take of it.
A very involved checkup at UCSF about BMS ... - PSP Association
A very involved checkup at UCSF about BMS study drug.
Sorry, i forgot to sign my post about my appt. at UCSF. Love, Mary B.
Thank you, Mary B. It sounds like a terrible ordeal. I do hope it leads to a treatment that works for you (and all of us) right away, of course, but the research and all the trials bring the cure closer, whether this one is THE one or not. So whatever happens now, you are sacrificing for and contributing to the cure that will certainly be found one day.
Thank you.
Love, Easterncedar
How brave and very unselfish of you, to put yourself through this ordeal. We have signed S up to help in research, but nothing has come of it.
I expect these drugs they have you on, take a while to get into the system, so any possible improvements, may not have started to take place yet. We all live in hope. One day, one day, somebody will start to feel the benefit of a drug. Whether it's you tomorrow, or not for another 10 years. At least they will be learning what isn't working and each day working with PSP, they will discover all the things that we hate about this dreadful disease, which is bound to make a difference in the care and treatment for patients.
Thank you on behalf of all sufferers of PSP, past, present and future and of course us carers, who have to watch.
Lots of love
Heady
Well goodmoring, I hope you are both rested from the long journey. I dont like taking meds for colds but I find that a little mint oil right under yournose helps clear up your breathing passage, please have your husband try that.
We had my mother in fitted with new glasses they seem to be working for her, you may also wnt to try a reading magnifier to read that may help.
I owuld love t hear about the trial med for PSP and all the other isms related to the parkinsons family...keep us in the loop
Thank you so much Mary for enduring these test, pokes and prods and long bouts of transportation....In the mean time let me tell you that my husband also was an avid reader. And they were hard books on philosphy and religion (read the Bible several times) He also read for entertainment John Grisham etc... But now that he cannot read, he listens to them on CD. The library has a great selection....I am sure there is higher technology that provides audio books....it's all good....We listened to a Grisham book on the way to Arizona(we live in Arkansas).....it was really good! So anyway you might try a new form of "reading" that will entertain you once again....
Thank you once again for your service and sacrifice to finding a cure to this horrid disease
AVB
What drug is BMS? Is this a phase 2 study? Sounds like you went through the ringer.
Thanks for Persevering.
Bernie
Thank you for being soooo brave and good luck , knowing that people like your self and the Dr s are trying gives us all hope .
Thank you.
Ask about prism glasses . Can help for some worth trying
Thank you for the suggestion.
Cause of PSP....reflections:
Rosemary Lodge Residential Home
Rubbish day
She is home...
