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PSP Association
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New to PSP

Hello,

I was diagnosed with PSP 3 days ago. It took a lot of test and time. I am feeling very upset and frightened.

Being new any help, recommendations, information

Would be appreciated.

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I am sorry for the DX of PSP. I can see how frightening that can be. There are currently clinical trials being done by Biogen and AbbVie. I would encourage you to look into them.

In addition, it is helpful for us who visit this site, if you would let us know a bit more about you. What country do your reside? How old are you? Are you alone or living with family? Etc?

I encourage you to get acquainted with the the "SEARCH HEALTHUNLOCKED" search bar. It is located on the very top right. Put in questions or topics...

Also, Google does not have sharing but will supply information on topics.

PSP is NOT related to Parkinson's. It is one of 6.... PRIME OF LIFE BRAIN DISEASES... which consist of PSP, CBD, MSA, FTD, ALS, CTE. You can access excellent lectures on youtube.

Margarita Gonzalez, Los Angeles, CA, USA

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Thank you for your help. I am female 67 years old and have been married for 48 years. We have 8 grandchildren the oldest being 24, the youngest 5 months. I love to garden and recently started raising butterflies.

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You took the words write out of my mouth and away from the keyboard. Thank you for that.

Tim xx

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😀

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I live in the United States

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We are in Ohio and my Mom has CBD - this site has been a tremendous help in gaining knowledge, and being surrounded with people that understand this journey. Heed the advice that is offered, and allow those here to be a listening ear when you need it. Blessings.

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Thank you. I am still figuring this site out. Things come a bit slower to me. One day at a time!

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Welcome to the site but sorry you had to find it. Excellent advice has been given already so I'll just add to exercise as much as you safely can. Most people seem to have experienced benefits from doing so. Getting legal affairs sorted out sooner then later is a good idea too. Ask any questions you have as there is a wealth of knowledge among the people here.

Ron

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Thanks Ron, I love to do water aerobics but have to have my husband with me now when I do it. I am walking several days a week with my rollator.

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Hi Butterflyfr, you will find this site and the people in it most supportive, helpful and caring. You will find others like yourself also fighting PSP at varying stages, as well as a wealth of info from those who have cared for and lost their loved ones to PSP.

Yes, I understand your fear and panic, I hope that as time goes by, you will find support and comfort from HU that will help you face those fears, and understand how to help yourself and your doctors if they are not well versed in the disease.

Enjoysalud has given you some great advice already!

I live in New Zealand and lost my husband to CBD in 2016, yet I still keep in touch here as there were many friendships forged during his short illness.

Big Hug

Jen xxx

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Thank you so much. I am also learning my way around this site.

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Thank you so much. My world was turned upside down. Thank you also for the hugs. I have done my share of crying these first few days.

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Your responses make me happy 😃

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Welcome. It took me a year and a half to find this place. You are starting out in the right place.

At age 67 I will assume you have your will and legal and medical power of attorneys in place. If you don’t, do it. Make your wishes known to you family.

With PSP it is use it or lose it. A physical, speech and occupational therapist would be a good idea. Exerscie is the only treatment to keep you going as long as you can. I found having the occupational therapist in the home was the best use of them. They pointed out things to me that wouldn’t come up in an office setting.

You might have a response to carbidopa levodopa. Some people do see benefits from it others don’t.

This is the US government site for clinical trials if you want to do any that might be in your area. clinicaltrials.gov

I think they sort of slow down in the winter. There were more listed in the spring.

Ask any question about anything. Someone in the world will get back to you with their input.

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Thank you so much. Can anyone tell me more about progression of symptoms.

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No two people progress the same way. I read everything on here to get an idea of what could happen. When something does arise it’s usually something I read about on this site.

Christine47 sent me this a year ago.

In a response to your message about the year Larry is in, I agree with EC. There are too many variables, but status is usually is determined "since diagnosis." Once I heard that symptoms actually may have started 10-20 years prior to diagnosis. The variables may include misdiagnosis of PD or AD, type of PSP "The new criteria recognize the various phenotypes of PSP. They are PSP-Richardson syndrome (about 55% of all PSP), PSP-parkinsonism (30%), PSP-frontal dementia (5%), PSP-ocular motor (1%), PSP- pure akinesia with gait freezing (1%), PSP-corticobasal syndrome (1%), PSP-progressive non-fluent aphasia (1%), and PSP-cerebellar (<1%). The remaining few percent are combinations of these or still-unrecognized forms." And then the amount and type of exercise, mental activities (e.g. chess playing or work), diet and supplements done before diagnosis, maybe stress, weight, overall health status before diagnosis, age, exposure to toxins, smoking, alcohol consumption. My husband is in his fifth year since diagnosis with his first obvious symptoms in 2008 or 2009. His neurologist said his progression is "slower than average" since he can still walk . Ido look for plateaus, then a step down the progression trail and try to deal with that symptom. I hope this is helpful. It is frustrating I know

Christine

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Christine, is this something they can see from a scan or just guessing? We are new to this disease

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I was reposting Christine’s post to me.

That said the only way to tell what is going on for sure is a biopsy of the brain after death. I read only 67% of the brains donated for PSP research actually had PSP.

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Welcome to the site and I am sorry about your dx of PSP. My husband was diagnosed about 2 years ago but had symptoms quite a few years before. This site has been very helpful to us. I must say though that I am surprised of enjoysalud's comment that PSP is NOT Parkinson's. I was told that my husband had Parkinson's plus PSP? Any comments from anyone?

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My doctor said it was in Parkinsons spectrum. And thank you for responding to me. This is so very new. I have no idea where I am on timeline.

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Hello Butterfly and Welcome :-)

PSP seems to have been identified much later than Parkinsons, and appears at first look to be PD which is so much more common. I belief this is the genesis of the"Parkinson's Plus" descriptor, but PSP is its own disease and for the great majority is not responsive to PD meds. Jeff/Christine47's excellent excerpt describing all the variants of PSP may give insight into why there are many commonalities for PSP patients yet many very different paths!

On this last point, Butterfly, may I encourage you to take the most positive view possible in a bad situation: Yes, you have been slammed with a devastating dx, but there are patients here who are living more than 10 and 12 years with the disease. Some even still mobile. My husband ate real food right up to the day he died!... Yet when you read this wonderful site you will (understandably) read more about those who CAN'T eat, than those who can. My point is: you don't know your path with the disease - you may be like our members Jim and Tim who are still publishing books, and others still travelling and making memories.

I agree with those who say "Use it or lose it" - it was the single most consistent recommendation we received and I believe helped my hubby be somewhat mobile to the end.

I wish you strength, good luck and happy moments as you fight this battle.

XXX. Anne G.

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Thank you so very much. Your message really lifted my spirits. God bless you. With a positive attitude I can do this.

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Anne G. I love your perspective when you share - 👌🏻

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Thank you. I try to keep moving by walking with my rollator and take water aerobics classes when my husband can take me. I used to be very active so this is a huge change for me.

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Hi SuzanneA, happen to be back browsing. I am not an MD, but as I understand the literature and verbal dialogue with a few neurologists, Parkinson's produces the protein ALPHA-SYNUCLEIN in neurons. PSP produces TAU. I don't believe the brain produces both simultaneously.

Usually the first DX of PD is given as Parkinsonism (note the ISM), an umbrella term, or Parkinson's plus. The symptoms are often similar at the beginning, AND so a clearer DX is often impossible without the progression of time . As time progresses the Neuro can hopefully differentiate between the two.

As with most brain diseases, only a brain autopsy can give you an accurate answer.

NEWS medical life sciences had an article PROGRESSIVE SUPRANUCLEAR PALSY (psp) VERSUS PARKINSON'S DISEASE. I found the article in the Parkinson' site.

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Margarita, thank you for your very informative reply about PSP. I will follow your suggestion and access that 'NEWS' site for more info. All the neurologist told my husband and I on our first visit after a 5 mtes physical exam is: "You have PSP. It's like Parkinson's but worse and there is no cure". 3 MRI's later and many symptoms confirm the DX but luckily his progression is slow.

Suzanne

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SuzanneA, there in lies the rub....."it's LIKE Parkinson's but worse". To be LIKE is not to be the same. Also, I found the name of the person who posted the topic on the PD site. The name is "Iqbaliqbal". That person usually posts daily with some publication on PD.

Margarita, Los Angeles, CA, USA

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As I understand from my husband's movement disorder neurologist, he has PSP which is a Parkinson's Plus condition. This means he exhibits symptoms of PD in addition to a few other symptoms which define PSP.

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We were told by our Cleveland Clinic Neurology team that our diagnosis of. CBD is a distant cousin of Parkinson’s. Noted in her record of Park plus ...

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Hi Butterflyfr don’t despair you are the same person you were yesterday and nothing can be proven everyone has a different journey just get all the help you can and are entitled to you could still live a long and healthy life my husband has PSP he is very healthy he has a disability with lots of things but he goes out he eats Drinks mostly he’s in a wheelchair but that is because of a bad hip just remember no one is God

Good luck my friend xx

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Thank you for your kind words.

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Hi Butterflyfr, Last July I was in your shoes and I was also afraid as heck. The more you read about the disease the easier it is to understand and eventually accept. In the last year our diagnosis has changed 3 different times. My husband’s symptoms are not cookie cutter. Unfortunately we’re getting use to having the rug pulled out from under us. I’m telling myself that it makes us stronger. The differences in a proper dx is how it will be treated with different medications. When you only see the doctor every 2 or 3 months it seems like it takes forever.

Try to stay in the now and not dwell on the future. It will only make you more anxious.Take each day as it comes and live in the moment. Start journaling your symptoms. That’s what keeps me going. Stay positive and appreciate today.

Xxx from I SewBears

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Thank you I am trying!

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I just wanted to say welcome to the family. Sorry for your diagnosis but at least you found us. I am in the UK and things are different here so I may not be able to give you practical advice but I'm good with hugs, so sending big hugs to you today.

Live your life, you are not alone.

Sue x

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Thank you I love hugs! How can I respond back to you in the future?

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Hi Butterfly. I moved back home to help my Dad out, who had PSP and passed away last year. He probably had psp for 9 or 10 years. I read a lot about it during the 2 years I was helping him.

I'm sorry you're dealing with the same monster. If I may ask, as it would help us here to help you if we have an idea what stage you're in, what symptoms led to your diagnosis? Often the first symptoms are balance or visual issues. Those of us here can probably help you a LOT to deal with any symptoms.

And as has been mentioned there ARE studies being done for treatments and maybe a CURE. Please do check into those. I vaguely remember reading about a study in the last cpl days (can't remember where I read it but probably in email then deleted it,) a study for a new med which passed phase one but isn't listed yet in the clinicaltrials.gov official site. So, keep checking back at that site because there is yet another med that's showing HOPE and moving from stage one in the trials to stage TWO!

I did a trial med for cancer so I learned from that, there are only 4 stages before a new med is released to the public. Meds won't get past stage one if they don't show signs of HOPE so whatever you do... don't give up, prepare to fight, PRAY honey if you believe and I hope you DO because yes, I'm so sorry but yes this is a battle you're facing.

And lastly, as you read about psp and learn about what CAN happen, always remember as you read each and every word... that there's no guarantee you'll ever have some of the symptoms. I was horrified learning about it when my Dad was first dx but he did not get all those symptoms, ever. Learning what MIGHT happen is depressing! Please consider asking your doctor for an antidepressant for you, which will probably take 30 days or thereabouts to get in your system enough to have an effect and if it doesn't work for you, tell your doctor because there are several of them on the market.

Please update us when you feel like it on how you're doing. I know we can help you. My personal email is snnydays01@aol.com in case you don't hear back from me here because I don't check this site often anymore. You'll be in my prayers.

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Actually my balance got horrible and 2 times I was taken to hospital because I could not stand up. Then my eyes got goofy. It is hard to explain. This all started

About 3 months ago. Fortunately I have a terrific neurologist and she put me through a battery of test rather quickly. So do you think I am in stage 1? And thank you so much you have really helped me 😄

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I'm far from an expert but if I were to guess I'd definitely say stage one. If I was you and even though I wouldn't be in a happy good mood for having fun, all the same, I think I'd want to DO fun things NOW. If there's somewhere you'd like to vacation, just do it! If you have people you want to spend time with do it now before any other psp characteristics can kick in. And you can't be too careful about not falling anymore. My Daddy described it as, he'd be walking along and the next thing he knew he'd be on the ground/floor and unable to get up by himself. He got no warning and was unable to brace himself for a fall. Take your Vitamin D and calcium supplements to keep your bones strong (and have your levels of those, checked and monitored,) and soon (if not NOW,) consider a walker that has the seat in the back so that it can help break your fall because psp usually causes the fall to be backwards. I'm so sorry to tell you any of this. I know you must be just reeling from all the horrible information you're learning everywhere you look. I wish I had good news for you and will continue to pray for a cure for your psp. Be extra good to yourself, live and celebrate being alive, treat yourself to darn near anything you want and please be careful with your body. Hugs and prayers.

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Thank you. I find one day I am dealing and being positive and the next I am depressed. The doctor has me on anti depressants but some days are jut bad. I plan to take your advice and see family real soon. We live 900 miles apart.

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Hi Butterflyfr, so sorry for your diagnosis. I am on the CBD journey, PSP cousin,diagnosed June 2017. It is very hard to come to terms with but as others have said there is a wealth of information and everyone ‘s journey is different, progressing at different rates. Thinking back, I used to play guitar. Then found my left hand wasn’t so flexible so gave it up as I couldn’t press the strings down! That was 2013. So five years on , I have problems with my left leg/foot, balance and,lately ,speech and vision but not going to give in! I can get out provided I’m with someone, and have a rollator which I go out on when it’s nice weather as this is good for balance and has a seat so that if my legs feel weak, I can sit and relax till I’m ready to continue.

Like ticketyboo555,I am in the UK, so facilities, health services etc will be different. Lots of hugs anyway. Jaynexx

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Thank you. I also have a rollator. I try to walk with my husband every day. From reading on this site it appears I am in stage one.

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I was diagnosed only in October. At the time I was glad they could put a name to a feeling that I had. I fell backwards down the stairs twice in the previous year and was hospitalized when a piece of apple went down the wrong way and got stuck in my throat. Since then I have wondered about this disease and am better for reading your replies. Best wishes for the future.

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Wellcome to the site. I am not English fluently. I only can add four comments.

1) Ask your neurologist for antioxidants pills. They would interpher with the phosphorylation process that that mediates the Tau protein precipitation.

2)The gaze problems could progressively take you to botox application on the elevator muscles of the eyes lid. Be patient.

3)A physiologist will help you with the muscles of your throat, helping the deglution movements. A singer professor could help too.

4)Never surround. Swimming could help. Try to sing a military or rhythmic song to maintain your confidence during walking.

Big hugs

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I love to do water aerobics but have to have my husband go with me now. I had an episode where my legs gave out and I could not get out of pool. I have been walking everyday with my rollator to keep moving

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Hi Butterflyfr!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

Hug and luck.

Luis

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Thank you. I am just trying to get as much info as I can on PSP

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Welcome sorry you have had to join us but this is s great site for guidance and practical suggestions.

Others have given great advice my only advice would be set affairs in order and then get on with enjoying life , people progress at different rates and you may have many years ahead of you in which to have a good life

Love Tippy

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Thank you

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Thanks

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So sorry to hear that you have been diagnosed and you may not want to read some of the posts here because they send you into a panic. I hope you can come to terms with your diagnosis soon and then at least you can try to start to find solutions to everyday problems of living with this disease.

My father has PSP and is almost 80 so is loathe to adopt lifestyle changes but I read a book called "The End of Alzheimers" by Dale Bredesen which recommends cutting out sugar (including high sugar fruit and honey etc) and gluten and alcohol, amongst quite a few other things. I keep wondering if he was younger he may have had enough energy to try out some of these lifestyle changes which could have improved his prospects. Alzheimers and PSP are in no way similar in terms of symptoms but they do say they are both caused by this substance in the brain called tau so I keep wondering if following Dale Bredesen's programme might help....

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Thanks for the input my friend

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Welcome. This site really changed everything for me as I felt so alone when my husband was diagnosed with PSP . He died a year ago and time means I can assess things from a distance.

First. Its a dreadful disease but you have it and we just have to get on with it. One of the benefits of this site is that you will feel lucky because you won't have everything described !!!

Keep a sense of humour - it will help you so much in the development of symptoms. I would get angry but say to Chris that all anger was to PSP He was the same person as always - but PSP affected his reactions.

Make the best of NOW Make memories - videos etc

Do everything you always wanted to do.

I don't think this will cheer you up but its reality.

Big hug and lots of love from Jean x

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Thank you Jean. Do you know if tremors are part of PSP? Although I was diagnosed with PSP my neurologist is sending me for a DAT scan. That rules out Parkinsons.

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Chris didn't have any tremors . He wasn't any thing like Parkinsons.

Let me know how it goes. I'm rooting for you !!!

x

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Thank you. I have not been on site for a while. I had my DAT scan. No results yet. I do have episodes of weak legs when I can hardly stand up and must use rollator. Then symptoms lesson and I will have a few good days. I wonder if this is normal

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I think it probably is. Make the most of the good days !

x

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Hello Butterflyfr. Sorry you have received this diagnosis but welcome to this forum. You will get lots of support, helpful information and lots of love/hugs. As others have said, keep active and exercising as much as you can, it really does help. Do all those things you want to do and places you wish to see now and make lovely memories to look back on, especially when days maybe not so good. Good luck, Nanny857xx

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Thank you so much. Past couple days have been bad but I am hopeful tomorrow will be better 🙏

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So sorry to hear that. 🙏 for you. xx

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