Hello. I am almost 70 (in one month) live East of Sacramento, CA, USA and was diagnosed with PSP in June 2015, even though I had had multiple symptoms for the prior 2-3 years. I am presently in a clinical trial for a medication for PSP at UCSF. I have been in this trial for about 5 months now and feel it is working. I will now go into the open label part, for those who took part in the original trial. This is all very exciting to me. I feel what do I have to loose. The entire PSP team at UCSF is phenomenal! I am still VERY tired, my vision is worsening, I now have a great increase in saliva, causing me problems. I can't drive and walk with a walker. But....I am still alive. I happened onto this site yesterday and am glad I did. I do not know anyone with PSP. The support group I found was too far away to get together.
Mary B.: Hello. I am almost 70 (in one month... - PSP Association
Mary B.
Hi, Mary B! Nice to meet you. Great news about the trial. We live in Maine, and have one acquaintance from Vermont whose father had PSP, and that's as close as we've come to knowing anyone else with the disease, so this site has saved my sanity, if not my life....but I think it has saved our lives as well! so much good advice, as well as sympathy, and humor. Jillann, Shasha, myjual and peterjones, among others, are great folks here who have psp. I'm a carer. My sweetheart was diagnosed in 2011. We just started atropine drops to help with the saliva. Too soon to say if it works. Does being in a trial mean you can't take anything else? Thanks for participating, anyway. I'm sure it will ultimately serve the cause! Love and peace, Easterncedar
So nice to meet you, too. It's too bad that PSP had to connect us. Being in the study means I can't start any new (to me) meds. Which is unfortunate as I have things cropping up, like the excess saliva, but can't take anything for it. Another thing that is so bothersome is my neck pain and stiffness and I am stuck but at least I am still alive. Over Easter we are flying back to Ithaca, New York, which is closer to you than I am now. My husband, son, daughter-in-law, their three small children, my daughter and her 14 year old son are all going to visit my grand-daughter who is a freshman at Cornell. My son seems to be afraid I won't live to see her graduate, so he wants us all to go now, when I have plenty of help. Some days I can feel myself dying but most of the time I feel like I can beat this terrible disease. I haven't gotten through the posts,yet, but am excited to. I do hope the atropine drops help, but if they don't do the trick, I'm sure you will find something else that works. Thank you for responding to my first post.
Love and peace to you and your sweetheart, Mary B.
Hello and welcome. I care for my husband who has PSP. He does have the drops for saliva, but I read that Pineapple juice can help too. I have given him this and it does seem to have some effect on the excess saliva without any side effects like the ones that he gets from the drops. Maybe you can try this as it is a natural product. Good luck. X
Cornell is a terrific school in a beautiful place. Have you ever been out that way? Too bad Easter is so early. There won't be much spring going yet, and it's glorious around there in apple blossom time. I'm originally from Niagara Falls, Ny, and I have family near Ithaca. A good friend did her grad school studies in plant biology at Cornell and was married there in the glen.
I'm sure you'll have a splendid time with such a nice family crowd around you. Happy Easter!
With sadness I welcome you. But I am very excited to hear of your experience with your clinical trial. I applaud you for your bravery to be tested, poked and and prodded.
But doing this may just lead to the key that frees us from this PSP beast! Good luck and welcome to site . May I invite you to write a daily diary about effects the test and its having on you? Many things may need to stay confidential but those things which can be written about, I/we would be so very interested in in knowing.
Please give us an update when you can.
avb
My brother had PSP. U have to be careful you don't fall. My frothier fell 21 times but the last one was his last! All I can say because that is evidently is the biggest problem with this illness. If u feel like asking me any questions I will try to answer🙏🏻❤️
Welcome to the site MaryB I agree with AVB you are lucky to be close enough to an active study, (only PSP studies in UK seem to be data collection), which seems to be providing you with some active meds. On the saliva front M who has been diagnosed nearly 5 yr had uncontrolled saliva for over 18 months, Glycoperonate very effective for 6 months but no-longer effective, Botox jabs only a week in but no effect yet, I have noted that atropine eye drops (in mouth) do not put in eye if you have light sensitivity) do have a temporary effect for a couple of hours.
Enjoy the trip to Ithica get some good memories.
Best wishes Tim
Hello, sorry you have to be here. Have you looked at Serrapeptaze for saliva reduction? Also look into magnesium oil for the pain.
hi you, am 66 but live in berkeley, soon to be santa rosa. lets talk good luck with ithaca. ave fun
My husband, and I and children lived in Santa Rosa from 1968 to 1981 and LOVED it. I always consider it my home. I would love to talk and hopefully meet you face to face. We are just getting ready to leave for SF. I am in the BMS study for the tau protein. I am so hopeful.
There are at least 3 trials underway and I think most are being done at UCSF. Which drug are you receiving? So glad it appears to be working!!!! My wife and I travelled to Dallas back in November for her to enroll in the C2N trial, but they deemed her to be too far progressed to be a good candidate. I'm praying they will soon consider her a candidate for a compassionate dose. You might check the ALS.ORG website for ideas around managing saliva, as that is a major issue with that disease. Drool is only an occasional issue for my wife, so we haven't had to address it with medications. But it seems atropine seems to be the medication of choice, from what I've been reading. I think there are about a dozen drugs out there that can be used to manage it though. Thanks for being courageous enough to undergo this clinical trial. It's so important for finding a cure to this horrible disease. God bless you!
Ketchupman
Hi! My mother who is 66 years old now was diagnosed last year in February but we started noticing the symptoms in 2013. We live in El Paso, TX; a little closer than everyone else that has been responding to your message. I hope and pray that this trial works for you. My mother is in the last stage of this awful disease. The atropine drops were a big help with the saliva. It really dried up her mouth but it was better than her choking on her saliva and making her anxious. God bless you and give you strength.
Mary B, We were scheduled to be in the BMA study going on now in Birmingham, Al. The neurologist here studied with Adam Boxer there, and I have a lot of respect for him and his knowledge on PSP. He stated that my husband might have MSA, so my husband had to drop out of the study. I am very interested in knowing how things go with you and the study. I wish there was a web page that we on here could follow the studies. He was diagnosed with PSP in 2013, but I think he has had it since 2010/2011.
My husband is on the Glycoperonate and the atropine drops as needed. He is doing better with both of these.
41273416a, I get that same feeling of the group in Birmingham, Al. As before, Dr. Roberson studied with Dr. Boxer.
Mary Im not far from you I live in Yuba City but am over in Reno taking care of my Aunt Bev who has had PSP going on 10 or 11 years if need to talk or need anything or help just email me we also go to UCSF and yes they are wonderful I do not know what equipment you have but as time goes by there are things that will make it so much easier on you PSP is not only scary but will progress and I know a lot of ways to get some of the things you might need if I dont already have it and would be happy to help you get hospital bed, electric scooter, suction machine , things that will make life alot easier for you and help you. you can email me at krystetorres@yahoo.com
lots of hugs Kryst
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