A dear friend of mine was just diagnosed with psp in February -- the second person in our small rural community to get the disease, which is troubling. Her husband is still semi-paralyzed with shock at this point. Wondering if there are others on the site in our area.
Anyone from Northern California here? - PSP Association
Anyone from Northern California here?
Written by
Laurel54
To view profiles and participate in discussions please or .
41 Replies
•
I’m on the east coast in Philadelphia. There are most likely people near you but they may not know about this site.
If you hit the icon of the face at the top right of the page there is a people near me locator option to select.
Laurel54 in reply to
Will do, thank you!
Not much response.... There is Robin from SFran Bay area, and Enjoysalud from LA...dont recall anyone fr N. Cali.....(I'm Vancouver BC).
We're a scatteted group here online, but we're close in orher ways 
Chat anytime Laurel!
Anne G.
Thanks, Anne. I told my friend's husband about the site but he says he can't bear to read more about what the future might bring, at least not yet. We are in SF Bay Area so I will look for Robin.
in reply to Laurel54
The thing about all these neurological diseases is no two people follow the same progression. I read this site for potential things to watch out for. Everything gets discussed here.
Laurel54 in reply to
Jeff, I've just been reading some of your posts. The story of you and Larry is heartbreaking and at the same time heartwarming. I guess the silver lining of psp, if there can be such a thing, is how it reveals the finest aspects of human nature...and just when I was giving up hope on us as a species! All my best to you both.
I love your part of the country. My husband grew up in Buck's County.
PS. Like you I keep going over the past few years, trying to pinpoint when it was my friend began to show her first signs. It's like I think if I can just put my finger on it, I can somehow turn back the clock and stop the whole thing from happening. Not as devastating as having a partner with psp, but she is my closest friend and pre-psp my daily walking buddy.
Hi Laurel: For your info:
Robin is Robin Riddle, Founder of the Brain Support Network, after caring for her father through PSP. She is also BayAreaRobin on the CurePSP (North America's organization) pee- to-peer support website SmartPatients. She contributes research/science-oriented stuff here and knows local and national physicians and experts. Both this site and SmartPatients have private messaging options.
And bless you for being a great friend! I totally get the emotion to hold off the "awful revelations" of the disease. When the time is right, he may want to participate. But if he doesn't (or even if he does) your caring - but just that tiny bit removed - perspective will be so useful for him. You will read and gain so much information from this site. And when it's needed, you will have that info to share with him.
Courage, best wishes and hugs XXX
Anne G.
Thank you so much, Anne. It sounds like you are carrying a heavy load yourself, so am especially grateful to you for taking time to pass along this info.
We're in SoCal, but are very new to this. One neuro has said she thinks my husband has CBD, and another isn't sure yet and is still running tests.
Sorry, tried to reply earlier but messed up. Wondering if your husband has been to a neurolophthalmologist. Based on what I've learned so far, problems with eye movement seem to be a key indicator of psp. It's all awful, I'm so sorry.
We can ask about that. .. so far, he has the blinking problem, which leads to the bleary eyes (blepharitis?) but no eye movement problems yet. It's hard to know what we should push for first.
Has he been to a neurophthalmologist? Based on what I've learned so far, and what happened with our other neighbor who had psp, problems with eye movement are a key indicator of psp.
I live in Folsom, CA which is about 30 miles east of Sacramento and I was diagnosed with PSP a little over 2 1/2 years ago however I have had symptoms for about 6 years. I am in a clinical trial at UCSF and as of 2 days ago I am 72 years old. I hope we live near your friend.
Clinical trials! My friend's neurologist told her there were no clinical trials at the moment!
Will pursue. My friend and her husband are out on the coast, 40 miles north of SF. How do you deal with getting to UCSF from Folsom? Do you spend the night in the city?
How are you doing at this point? You sound good.
in reply to Laurel54
A site with clinical trials in the US list:
clinicaltrials.gov/ct2/resu...
This is why this site is so handy.
Laurel54 in reply to
Thank you, Jeff!
Hi Laurel, There are actually several drug trials in progress. Abbvie and Biogen are the big drug companies testing drugs right now. My mother, 81, has had PSP symptoms since 2015 and we are going to the Mayo clinic in AZ for the Abbvie trial. We go once a month for the infusions. The drug company pays for our plane, car, airport parking and hotel plus they give my mom a stipend for each visit that covers food. 2/3 of the patients get the drug and 1/3 get a placebo. Sadly, I think my mom is getting a placebo as she continues to go downhill. Her speech is horrible...pretty hard to understand her these days, but she continues to live alone. Her walking is the least affected...she still walks her little dog 4x a day and only uses a cane occasionally. However, her vision, speech and swallowing are quite bad. We are going back to AZ next week for infusion number 5.
Definitely go to the clinicaltrials.gov to see what is out there.
Thank you! I didn't realize the out-of-state trials paid expenses.
Dear Laurel,
I have been going to UCSF for over 2 1/2 years. My vision is poor so I no longer drive. My husband drives me,but, this has had its challenges. He is dealing with his own health issues. Luckily, our son, his wife and three school aged kids live about one hour from UCSF so we usually stay there with them. We found we needed to be there for more than a day. We have MRIs, LPs, tests by the neurologists, the neuro ophthalmologist, etc. I get very tired from it all, however I am most grateful to be in the study. I do believe I got the drug all along but I got a very low dose. Those in the study are now able to get the highest drug so I will get the higher dose next week. I am very fortunate as they now have me go down every third visit and the other two infusions are now done in my home by a home therapy IV nurse. It is wonderful. I am doing well. I do walk with a walker and tend to fall a lot. Hope all goes OK with your friend.
Love, Mary B
Thank you, Mary. You sound like you are doing remarkably well, all things considered. I read some of your past posts, including one about how much you miss reading. I love listening to books on Audible -- have you tried?
Yes, I have listened to taped books and love them, but I really miss holding, smelling and just good old fashioned reading, both my caregiver and family advises AGAINST me meeting for lunch. They are afraid I will get emotionally involved and spend my time worrying about you and your mom, ugh!! Please. Keep in touch and hopefully they will learn you only have good intentions. SOrry.
Love,Mary B
Hello there...I live in Auburn. My mom has PSP and we are in the Abbvie clinical trial at the Mayo in AZ. (UCSF wasn't taking any more patients when we inquired). My mom had symptoms starting in 2015 with double vision. She is 81 now and is still living alone, but her vision and speech have taken a major turn for the worse the past six months. I do not think we are getting the drug in the trial...I think we are getting the placebo.
Maybe my mom and I could meet you for lunch one of these days?
I would love to meet you both. You’re the closest people to us. I’ve been looking for someone for three years. Please keep in touch. Thanks, Love, Mary B.
Great. Why don't we get together for lunch April 24? Does that work? Or another day that week? Once we figure out a day, we can figure out where. My pH is 916-479-2433.
We are in the LA area. I second or third the suggestion that you contact Robin. She is great. Where are you located? Kryste is mid-state (Tahoe?) with her Aunt Bev. She has not posted in awhile. You also might check with the CurePSP forum on Smart Patients.
As for your friend, I agree with Jeff166, everyone seems different in symptoms as well as progression. If there is one thing I wish had been available was neurologic physical therapy that focuses on neurological disorders and brain plasticity. Starting early after diagnosis should be helpful. I am now fighting with insurance to approve it for my husband.
Christine
Thanks, Christine. We are about 40 miles north of San Francisco. I've never even heard of neurologic physical therapy but am going to read up on it. And I'll check out Smart Patients.
The University of California in San Francisco is conducting clinical trials on PSP I m sure they would be interested in two cases in the same area as the disease is so rare.
Hi Laurel, where in Northern Ca, I live there to sorry about your friend being diagnosed with psp. Nettie
Hi Laurel, we are from Northern California in Humboldt County, and my close friend has CBD. He is involved in a UCSF research study, and through this study UCSF has also connected him with information, physical and occupational therapy, and speech therapy. I have been wanting to write to this group and get some advice. Our friend lives independently still and his place is in the country with stairs around the house. He is having trouble doing things such as getting up out of cars, handling things and taking a shower independently. he loves his independence and he has a really hard tums asking for help, and does not accept help easily. But he has quickly entered a new stage during the past few weeks where it may be dangerous for him to be there in the country alone. I feel like I need to help him think through it and we need to figure out a place for him to live where he can be driven around and helped with daily activities. he is still driving and I am getting increasingly worried about the safety of that too. We love him so much. This is so hard to witness, let alone go through!
Yes, rural life with a neurological disorder can be daunting. And I think that people who are attracted to rural living are independent by nature, making it doubly difficult. Throw in a house with stairs....Could he afford to hire someone to come in and help? Assuming a few hours a day would even be enough....My friend is 40 miles north of San Francisco, on the coast in West Marin.
We are also located in a small rural community (not even on some maps) in Central California. In a state this big, we could be close or miles apart. Where are you? My husband was diagnosed in 2015 after several years of symptoms which he chose to ignore. He's been in a care home for the last 9 months. It's about an hour from our home so I spend a lot of time on the road. I only recently learned about HealthUnlocked. I wish I had known about it sooner.
My friend lives 40 miles north of San Francisco, on the coast. So not as remote as you. If you don't mind my asking, what were the earliest symptoms, the ones your husband chose to ignore? I keep going back, trying to figure out when it all started with L. I think the first thing I noticed was that she was slurring her words. But she always enjoyed a Manhattan, so I wrote it off to that.
I guess his very 1st symptom was losing his sense of smell which he denied and we argued about for several years. I'm not sure if not being able to look down or falling was next, maybe they were simultaneous. When I questioned him about why he was always looking down, he said it was so he could see where he was going so he wouldn't fall (we live in the foothills so our terrain is pretty rocky and uneven which made it more difficult). Of course it didn't help. At first he said his balancer was broken then changed that to, "I'm out of balance". Then he started to shuffle because he thought that would help with the falls. When he figured out that he couldn't step back without losing his balance, he started making U-turns. I think a loss of interest in things he had enjoyed (apathy) probably was next. I just thought he was depressed because he couldn't stop falling. He, now, can't use his left hand--he's left handed, can't walk, is losing the use of his right hand and can't talk any more than an occasional yes or no. A lot of the time it seems to just take too much of an effort to talk. He has to be fed, bathed and transferred now. He can't sit for long in a wheelchair. His eyesight is reduced to tunnel vision so TV is his only diversion. Thankfully, he doesn't seem to have too much of a swallowing issue yet. I suppose it will happen one day though. It doesn't seem like any two people follow exactly the same path.
My husband, too, never wanted to know more about his illness. I don't think that is unusual. Your friend is very lucky to be so close to San Francisco because he will have access to UCSF which I believe may be doing the most to help people with PSP on the West Coast. I hope he will take advantage of that. By the time we learned about them, it was too difficult a trip for my husband (3-4 hrs each way for us because of the crazy traffic) There are buses and special appt. times at UCSF to accommodate people from outlying areas. I know there is one from Modesto which is an hour from us. There is probably something like that in the Point Reyes area or your closest town of any size.
Robin Riddle at the Brain Support Network is the most knowledgeable person I've run across when it comes to PSP. You can google her. Anything I can help with, I'm happy to do it, but I'm certainly no expert. That's Robin's job.
Thanks for taking the time to answer. What an ordeal for both of you. My friend's husband doesn't want her to know what she has yet...he figures plenty of time for that later. But from what you say, it's important to act early on these trials, before participating becomes too difficult. His reluctance stems from the fact that her friend Alice was diagnosed with psp about three years ago and died last spring. My friend saw what Alice went through firsthand and her husband just can't bear to tell her that she now has the same disease.
Hi Laurel, thanks for getting back to me, I am in a small town out side Orland ca which is south of RedBluff.
Olive country! I am so sorry about your brother. He is very fortunate to have you. Where do you go for medical care -- Red Bluff? I read your post about recording voices. My friend has trouble speaking now, which makes me sad -- she had such a wonderful voice. We used to talk every day.
Not what you're looking for?
You may also like...
Is anyone from the USA?
This site seems to be intended for people in the UK but there are a few brave souls in the USA, so I
Yes Georgepa and Jean, we are here...
taken on our second visit to the enclosure, once our emotions had settled. We next went to the...
Has anyone tried supplements?
Hello friends, I was wondering if anyone had tried any nutritional or other supplements? Our...
Sandy - still here with us
places to sleep in our rather small house. It's wonderful. Sitting with my husband, wondering if...
Waiving hello and why we have been absent from here.
Back From Mayo Clinic
Newbie - from pads to conveen
