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Hi. I've recently been diagnoses with PSP. I've obviously had symptoms for a long time, but i just got the definitive diagnosis.

They haven't started my physical therapy or occupational therapy yet; I'm waiting on the therapy folks to get me an appointment time. Otherwise, I go to my Zumba classes and sort of move around to the music although I' can't do turns or jumping motions anymore; but an hour of moving to music has got to be helpful.

Does anyone know of a good resource with a time line of progressive symptoms and stage prognosis?

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  • Hello, saftasarah. Sorry about the diagnosis, but welcome. There have been several useful articles posted here. If you search for "stages" I think you will find some good information. If that doesn't work, write again, and I'll search something out for you. I want to help, but right now it's way past my bedtime. Good night and good luck. Please stay in touch. Easterncedar

  • How do you search?

  • Type in the box at the upper right, on the same bar as yor name. I just did a rummage, and I think, instead of searching this site, googling "four stages of psp" brings the info up faster.

  • thank you I found it!

  • Thanks easternceder (aha wonderful boat building wood!)..

    I'm finally getting around to individual answers to everyone. I have to go away often. Plus now I get so tired that by 8:00 I just collapse.

    Carla

  • Go to CurePSP online. You will find information on that site

  • Yes I've been there - before I got this site. wonderful resource!. Thank you again

  • Go to Cure PSP online. You will find information there

  • Wow you can go to Zumba, welcome to the site, lovely people you will get the answers you want xxx

  • I do a modified Zumba with a few other "old broads" who really look out for me. Great sisterhood and so much love and support and the exercise it almost just the gravy.

  • I am so sorry to hear of your diagnosis. Exercise of any kind is definitely a good idea. And PT and OT help all along the journey

    Although we live in the US I found the U.K.'s PSP CarePath brochure online that gave a very good indication of the stages and time line - although everyone progresses differently, so it is only a guide, but is very helpful.

    Good luck and keep up the Zumba! You could probably do it with a walker if/when you need the suppport and there is enough room.

    Finoni

  • If you can find a pool the best thing you can do is get into warm water therapy. My Aunt Bev loves it its the only time she feels even close to normal. She is bed ridden but not in the water.

    lots of hugs Kryste

    P.S. learn sign language

  • Unfortunately the nearest warm pool ( for winter) is about 35 miles away. Luckily 'm still out and aboutr, although I LOOK tipsy when I walk - at least with y cane I'm not thought of as drunk (as would happen before I began to use it). lol

    I happen to sign - I was thinking that it might be helpful, and you confirmed it...now I need my caregivers to learn it!I used to teach a "simplified ASL" course for older adult couples who were losing/ had lost their hearing. It worked brilliantly. I think if I can retain use of my hands it will reduce a lot of possible frustration and allow better communication. I really thank you for letting me know I was on the right track with the signing.

    Hugs back

    Carla

  • The answer to your last question is CurePSP.org and PSPA. And my words of wisdom is concentrate on doing Zumba a s well as you can, not how long more you have to do it. That worry will get you faster than the disease. PSP hits people differently and some symptoms last longer in others and I am pretty sure there are no definitive stages....CurePSP.org has research using different drugs etc that you might be interested in and they certainly can tell you what sort of issues are symptomatic of PSP .

    With that being said, I would say you are doing terrific ! There are others on this site who are patients who you should read up on....they may have ways to cope and other soothing words that help you get on with the day...

    If I may add also that you need to focus on on 3 aspects of your life. The physical...sounds like you got that down. The mental/emotional talk to your dr about EVERYTHING....and you know you have us to ask q's, give answers, insights, experiences or just rant rave ; and the spiritual aspect of your life. If you believe in God let Him know your needs ...I promise you my husbands needs were taken care of when God was bombarded with prayers for healing and comfort of his recent pneumonia....PSP is a hard tow but you do not have to go it alone...let Him in and he will give you comfort...with that I will leave you with a few scriptures I find help me....remember we are hear for you too....

    AVB

    God is our refuge and strength, a very present help in trouble. Psalm 5:12

    I can do all things through Christ who strengthens me. Philippians 4:13

  • Dear AVB,

    Thank you for your warm letter. Like you I a a person with strong religious faith, and I'm quire sure HaShem will support me. I've been a cantorial soloist and lay leader for many years, and have a background in pastoral care as well as Chevra Kadisha, so I've been very close to the whole process of serious illness and dying for a long time. Therefore, I am probably much less "frightened" than many others.

    I'm taking your advice and reading up like fury!

    warmest hugs,

    Carla

  • thank you for your response. I pray I do not offend anyone with my own faith. I looked up the words HaShem and Chevra Kadisha...Isn't interesting that in the beginning we so respected God that we could not even say His name...Now (including my self , unfortunately) we use His name all over the place.....

    Well again welcome and did you say where you live? I'm in Arkansas

    AVB

  • I'm in coastal NC, a little fishing village called Vandemere - on the main land(inner banks) straight inland from Cape Hatteras.

    We can say "God", just not the tetragrammaton.

    Take care AVB,

    Carla

  • Hello saftasarah

    There different sub-types of psp I have the sub-type pafg which is not as devastating than the usual types. I was diagnosed three years ago after being diagnosed with atypical Parkinsons way back in 2009 , I think that I am still

    compus-mentis Although I am falling a bit too often nowadays I still feel quite able to lead an independent life style . just remember that everyone is different and psp effects us alll in different ways

  • Hi Steph02

    Sorry to hear that you too are afflicted with this disease - and so glad that you have a milder kind. If I've read about the pafg variant, I don't remember. I began to get symptoms about 10 years ago. Like many my complaints were sluffed off and I think they thought I was mental or a a hypochondriac.

    So sorry to hear about the falls. So far I have not had too many, but I'm paretty careful and use a cane to "catch myself" .

    Like you, I am continue to maintain my independence; much to the horror of those who constantly want to "help" me.

    I guess I'll just figure it all out as I go along.

    Warmest wishes for your continued independence,

    Carla

  • great links THANK YOU

  • Hey M, How are you...how's dad?

  • I'm fine, dads still on his feet when in the house uses a zimmer most of the time, he took out another dinning chair the other day. That's only two down now though, 4 still to go, so we aren't that bad yet. He says he can feel he won't be on his feet much longer, but he said that over a year ago too so...

    How's your fella getting on?

  • Alot has happened in the last year....all the furniture that's gonna be broken, has long since found the burn pile....B now just hangin on to life I say that not knowing if it's 2 more months or two more years.....He's got alot still goin on upstairs.....it's the body thats failing...you know

    What's a zimmer...not the thing you stand and ride on....I don't think I can do that without PSP let alone with it....I'm glad to hear your dad so healthy....even if he can feel the progression...at least he has the cognition to understand what's going on....

    I hope this finds you well, thanks for the write

    AVB

  • Zimmer frame is what we call a walker. 👍

  • Thank you, thank you and thank you to all who have responded to my 1st post. so much help. I am familiar with the CurePSP site, but after trying to log in - got an acknowledgement and never could get into the patient part..at least not yet.

    i'm glad the three prong approach was mentioned - as that was the path I have kind of set for myself. I've always loved to exercise (weird I know - but I was a dancer), so I don't need to force myself there, and I'm more likely to overdo" than avoid.

    I have a really good emotional support team. A close family, dear friends who will be able to support my family. My biggest concern/desire is that I make as many pre-arrangements as I can, so that my family does not have to deal with the mundane "chores" involved with terminal illness. I have had a good deal of experience in this area, so luckily I know what needs to be done and what will help them.

    Spiritually, I am calm and at peace with the shole thing. For the last 20+ years I have been a lay leader and acting cantor at my synagogue (where I am currently president). I have at least two close rabbi friends. Since I work in inter-faith dialogue and am a guest singer in churches, I also have a great number of Christian clergy friends. If being prayed for could be a cure - I would definitely be cured; but we all know better. So instead I've asked those who would pray for me to pray for my caregivers and to pray I can maintain a sense of kindness and respect for those who care for me and thereby maintain the maximum dignity.

    Lastly, also, I've had enough background that I'm pretty saavy with the medical side. Even before the diagnosis, I know I was looking at a brain disease, and began educating myself. The only thing I can't seem to pin down is the timeline. I understand it is individual, but can't figure out where I am along the general spectrum. Recently things seem to be deteriorating at an accelerating rate, very annoying. I read a lot form caregivers and loved ones, but not so much first person. I am new on the forums, so f course i'll continue to search. I have seen the rit one and a coupe of Medical sites.

    Again thanks to all and I'll be getting back soon.

  • It seems from people on this site that it is impossible to assess that. There are some who seem at deaths door and recover and others who go downhill .

    It seems to me as a carer that it is more important to accept your time is limited and savour what you have now. Mke memories with your loved ones.

    You clearly have a good support system. Welcome.

    love from Jean x

  • Thank you Jean. It is certainly a crazy ride. I've had symptoms for over 10 years, but in the last few months they have been getting worse and new things are happening rather quickly; comparatively anyway.

    I've got an unusually strong support system - you are right. Luckily our family has always spent a lot of time together - in business and socially, so I have a heaping of wonderful memories and we'll make new ones daily!

    Again, thanks for the warm welcome.

    Love and hugs to you,

    Carla

  • Welcome saftasarah, to our wonderful, crazy and loving group. I stumbled upon this group while looking for timelines and stages myself. I was looking for answers for my mother in law, she had CBD a sister of PSP.

    I have found many answers in this group but most of all I have found love. We are all in this together, carers and patients.

    Finding your inner peace and knowing what is to come is the first step. It seems you have that under control. As for the physical and emotional aspect of PSP, well there are many people on this site that can shed more light than I can. I have never seen a question too small not be answered, everyone is here to help.

    Hugs

    Paola

  • Thank you for the kind words of welcome Paola. I got onto t his site form a local Parkinsons net. They also have folks with other neuro-degenerative diseases on their list. The lady who runs it has been a friend for ;many years and ironically she and my husband were both diagnosed with Parkinsons about the same time.

    I know about CBD - not first hand but from my researching the whole class of brain diseases.

    It seems everyone here is very giving and caring. From what I read, it almost sounds as if the care givers get the hardest part of the whole deal. So, much of my "curiosity" has to do with anything I can do to make their lives easier for the long haul. We cannot see the future or change it, but I've always believed we can have a road map and plan for as many eventualities as we might know about...sort of mental spread sheets: If this, then that.

    You speak of your MIL in the past tense?

    We will certainly be in touch again. I hope when I can't write here anymore that my daughters will.

    Hug to you,

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