hi, fairly new, was disgnosed last july
newly diagnosed: hi, fairly new, was... - PSP Association
newly diagnosed
Written by
aicebeall
To view profiles and participate in discussions please or .
26 Replies
•
Sorry to hear of your diagnosis, but you are very welcome here. I see you are in the US; may I ask whereabouts? How are you doing? Do you have a good doctor?
yes, i have a good doctor. i am in sf but i know some of maine. where are you? love, me
We spend weekdays in Augusta, where I work, and the weekends in the western mountains. We don't spend enough time at the gorgeous coast. I've got a cousin in SF government. Never been there myself.
Hi aicebeall
Did they have you diagnosed as PD for a couple of years? We thought my husband had PD since 2012 and just found out that it was PSP last November. The weakness in his eyesight was what how they were able to diagnose it as PSP.
NSH
Hi my husband has been recently diagnosed too. Quite devastating!
Yes, it is a terrible shock when it comes, really takes the stuffing out of you, and it is frightening - but psp isn't the worst thing that can happen, truly. We get to hold on to our loved ones, even if we also have to hold them up.
EC, that's funny in a bittersweet way.
Seems that's the tenor of our lives these days, much of the time. When it's not screaming frustration or simple, brainless exhaustion. But we are not defeated yet!
Hey, goldcap. Been a while. How are you faring? Love, ec
Not so good- why I've been hiding. What I do. My beloved dog passed away. He was my constant companion for the past decade. Truly my best friend. He was everything to me and now I feel like I have nothing. Have some health issues of my own I have not been dealing with but have too now. I see my husband slipping more and ore each day and it's breaking my heart. Aren't you glad you asked?!
Not sorry I asked, but very sorry you have lost your best friend. Can you tell me a bit about him, if it's not too painful? Did you have him as a puppy? I do sympathize. My cat, who is 18, is fading out right now, and it's hard to watch, and to contemplate the hole she will leave. She is the longest good relationship I've had, and has been a wonderful comfort in hard times.....but she isn't a dog, with that degree of constant engagement.
My guy is still fighting, and there are good times still, but measured in minutes or hours rather than days. I never know moment to moment what to expect. I have got good aides now coming in while I'm at work, so things are feeling relatively stable. The grief comes in waves.
He's tossing about now, disturbed by the light of the screen. I will say good night. Hang on, my dear. Love, ec
EC, thanks for your concern. Aicebeall do not mean to hijack your post! Like PSP life we also had an erroneous PD diagnosis since 2012. He was so upset with it but now we both realize it would have been much better had it been PD.
EC, have had him since he was a puppy. He was slowing down but seemed to be healthy-never looked better. He was so patient waiting while I tended to my husband first most of the time. There is a giant hole and a pet is a pet no matter what the species. On nights F was too restless and moaning and thrashing, I am embarrassed to admit I would bunker down on the dog bed with him. He was a large breed and I styled him on his bedding so it was actually really comfortable! He was the best cuddler and always a soft furry place to cry when I was overwhelmed. He would sigh and put head on my shoulder and his paw around me. My family are on your side of the states and most of my friends have fallen by the wayside so I feel so very much alone. He was more than just a dog to me. I always thought he would be there to comfort me when my husband was gone but now I guess it will just be me. Couldn't replace him and I am so behind in everything so I am going to focus on getting my health issues taken care of. This never get easier does it? I have good helpers now as well-and pay dearly for it. One help me more and the other gets him out of the house so it is a nice balance. Having an accessible vehicle has REALLY made life more pleasant for us both. It"s hard to say where he falls in the PSP spectrum as he is further along in some things than some (on here) and behind compared to others. Looking into a combo hoist walker a therapist suggested. Don't know if medicare will cover. I have spent so much out of pocket for equipment already. Keep holding off. Remodeling on of our bathrooms to be more accessible has made a difference as well. Worth every penny ( $$$:). I remember when I first started following your posts and I was actually envious you could leave your guy alone while you worked. Still working? Bet if so its good to get out and interact in a non PSP world sometimes. I would probably just break even with full time carers though. Take care. Trying to rest. Eating a challenge with a mouthful of stitches! We will be eating the same foods for the next week though think I'll pass on the thickened liquids-HA. BTW found a great site with already thickened water & juices and such. Little more than doing it yourself but think they are more palatable for him and the time saved priceless for me. Be well, both of you and stroke the kitty a little extra.
Love & hugs,
Jayne GC
EC, what a wonderful post you wrote and you wanna know something i Just Looked up and Found this was 3 months ago you wrote this!....I don't know if I just received this post or what.....
Getting paranoider...
AVB
Please don't worry! Breathe deep and relax! Things do run under the radar here sometimes. I check the newsfeed every so often to see what folks are commenting on and often find whole posts I had missed.
Yes but this just popped up on my email as if it had just been sent....well breathing deep and relaxing....thanks ec, I wonder how goldcap is....
GoldCap, how are you?
AVB
ji ec, i like yur posts. always look fir u love, alice
How are you, Alice? It's good to hear from you. It's been too long, and I'd really like to know what you are doing and thinking these days. Love, ec
Im so sorry about your dog gc. Start taking care of yourself. I tell you the truth it's a 1000x harder to care for your husband when you are on the down and out; whether it be pure emotional or just physical or both....Go to the Dr. For YOU this time!
Keep us tuned in. We are where you are...
AVB
Yes we do still have them. We have quite a few laughs when he gets muddled. Thanks for your reply.
eastern cedsr, i keep getting notices that you replied to ne, but they are not nine
thanks anyway, alice
San Francisco? Wow! You are in the heart of PSP research at UCSF and the Tau Consortium. Is your doctor there? We are in the Los Angeles area and I have wondered if a visit to UCSF would be helpful. Hopefully you will find some of the new clinical trials right up your alley. And you will be able to nip this thing in the bud. And pass along what you learn.
Christine, wondering how you were-my fellow LA PSP person. No luck getting into a class study closer to home? Is he walking again? I was just thinking about you and hoping everything was ok. Do you have any helpers now? I rotate 2 but it never seems like enough time
Hope all is well,
Best to you both,
GC
hi christine, I was going to do clinical trials but decided not to. was diagnosed at ucsf and have a neurologist there. am just about done with last dance at the savoy. he went to ucla , perhaps you should go there, -alice
I am sorry that you have been diagnosed with anything but is it with PSP?
There are several people who are patients of this disorder that you might like to talk with. LizB, Jillann, ShaSha, etc. I hope you get a hold of them you. You may be able to share notes that we carers are not really privy to. At any rate welcome to this site.
AVB
Not what you're looking for?
You may also like...
Newly diagnosed
My mum has just been diagnosed with PSP. Whilst it is not good news it's good to know as it has...
Newly diagnosed
My father has just been told he likely had PSP. We know nothing at all about the condition so any...
Newly Diagnosed PSP
My sister, 57, is recently diagnosed with PSP. She was showing signs and symtopms since almost two...
CBD newly diagnosed
Hi, I'm Stephanie and I live in the UK. I was recently diagnosed with CBD, two weeks ago, and...
Newly Diagnosed PSP
My sister, 57, is recently diagnosed with PSP. She was showing signs and symtopms since almost two...
Newly diagnosed with PSP
Daughter of newly diagnosed PSP patient 
