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PSP Association
5,777 members7,868 posts

Hoping for cure

I have just recently been diagnosed with PSP, have had nuclear brain scan an it was very positive. I have signed up to join a trial study that will start in December, the study will last for two years going once a month for test. There will be 3 groups and one group will receive placebo but no one, not even doctors, will know which group you are in. Praying in my small way I can help the doctors learn more about this disease and one day find a cure. I will continue posting my progress. At this point I am still active but have to be very careful because my balance is not very good. I have just began using a cane mostly foe security. I have purchased a walker so will have handy for bad days but not using it yet. But especially when I have to get up during the night to go to bathroom it’s good to have nearby because I am very wobbly arising from sleep. I am doing whatever is necessary to prevent falling. Other than being diagnosed with PSP I am basically a healthy 81 year young woman. I love life and have total faith that God will hold my hand and guide me through this trial. My desire is to hopefully help the researchers learn how to treat this disease. I have had a full wonderful blessed life and feel this in some way will help me to serve a real purpose for being here. I hope this makes sense to anyone reading this. As I progress with this study I will post findings that I have been made aware of. If you have questions I will do my best to answer what I can. Blessings to all.

41 Replies
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Good luck. Welcome.

A very brave post. I wish you well.

and will be interested to follow your progress.

x

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Thank you, this site has been so helpful.

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Hi, that's wonderful that you are joining a clinical trial. Where is it being administered? Where are you located? USA? what state? What is the name of the trial?

I will be looking forward to your sharing once the trail has started.

Blessings.................

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I live near Austin, Texas. Not sure of trial name, will post when I learn.

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Hi, thank you! My sister lives in Austin and today they had to drive 20 miles south to get water.....since all water has to be currently boiled....and Austin stores are out of bottled water.

I was the caretaker for my son who had PSP. He died at barely 55 years old May 4, 2017. I will look forward to hearing your shares on the trial....I appreciate you agreeing to do that. On your profile you might want to put Austin, Texas, USA.

Blessings, Margarita.... Los Angeles, CA, USA

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Actually I live in Round Rock, Texas, near Austin. I have a fantastic neurologist here and that is where I will do my trial.

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Good to hear!

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We got a lot of rain but no problems like Austin.

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I live in Los Angeles....in the same house since 1967. ......I have been thro two serious earthquakes...........I guess where ever we live there are going to be challenges. I love living in Los Angeles.

I am looking forward to your shares when you start the trial.

Blessings.........................

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Good luck with the trial and thank you for being prepared to take part.

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Thanks, God Bless❤️

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Dear Faithfully, I so admire your very bright attitude. That is wonderful. Thank you for participating in the trial as it contributes to the cause. I pray you also find it to be beneficial for you! I believe, even if you end up in the placebo group, that you will then be given the drug also. At least that is what I was told through University of Florida and also MUSC (Medical University of South Carolina). My husband was willing to participate but the MRI that found his PSP also found that he had had a stroke, unbeknownst to us.

Best of luck to you and I look forward to hearing how you are doing!

xoDorie

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Thanks, sorry about your husband, prayers❤️

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Good luck and with your positive attitude I`m sure you will keep going as long as possible.

xx

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Thanks, appreciate your support.❤️

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A very positive lady. I hope you have lots of support.

I will definitely be interested to hear of your progress as you bravely participate in the trials .

I wish you well

Love Lynda x

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Thank dollydot, with God as my guide I have no fear. Will continue to let all know how it goes. I am so ready to get started😊

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Welcome to our family, I wish it were under better circumstances though. Be prepared for the plain truth, besides myself there are only a handful of patients on this site, most members are caregivers _ past and present and you'll learn first-hand how this journey affects them. You have two going well for you well already - Faith and Hope.

Blessings,

Tim xx

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Thanks, yes my faith and hope will keep me strong. Sorry to hear you have it too, as you said most on here are caregivers but I’m thinking they are the ones that need encouraging. We just need to keep our faith and stay strong. Sending prayers🙏🙏🙏

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You’re amazing. 💜👍🏽⭐️

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Awwww gee thanks, really just trust in our Lord He will see us all through this trial❤️

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Hi FaithlyHopeful!

I'm sorry PSP has entered your family.

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.

Despite your participation in the test 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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Thanks, I’m new to all of this, not sure what you mean by private mail, trying to learn my way around this site

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I am so impressed with your positivity, you just turned my bad attitude right around, thank you! My husband, 53, is in the screening phase for a trial also. I wish you good luck and thank you for participating and sharing. Like Daddyt has said, there are not many actual patients who post and its always nice to hear the patient's perspective and experience. Lots of Love and Prayers.

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Thank you, I’m so happy I could help you. I truly believe this has a purpose and praying I am serving that purpose. Best of luck with your husband❤️

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Wow. You are truly amazing. Thank you for the gift of willingness to help others. I, too, will be very interested to follow your posts and wish you the best in the trial.

Hugs,

Liz

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Thanks, I am so ready to start the trial and hopefully I don’t get the placebo. Will keep all posted.❤️

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I had my first physical therapy session and was very impressed. She said I actually had good muscle strength so will faithfully do exercises to maintain this strength. I do have a wii machine that has lots of balance features and strength building. I also play word games to keep my brain active. Thanks so much for all the encouragement you all have given me. My prayer is that this trial will be successful. Blessings to all that are dealing with this❤️

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Good!!!! Exercise is PSP's best friend.

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I meant best enemy...........oh well, I'm sure you understood.

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Lol I definitely understood, didn’t even realize what you had put til you corrected it. Thanks

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Greetings FaithlyHopeful,

Welcome to the site. I too am a psp patient and like you am participating in a clinical trial. Best of luck to you and I will follow your posts to hear how you're doing.

Kathy

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Have you already started the trial. I just had my first test yesterday and waiting til Tuesday to find out if my blood test is clear.

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Hello Faithly and Welcome!

I'm so glad you are participating: we have a number of participant members who are PSP or CBD patients, and their voice is unique and so important for all of us to get 'first-hand' info.

My only question is, Do you have personal support? Are there family members or close friends to give you support during your journey?

Hugs and Best Wishes :-) XX

Anne G.

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Oh my yes, I live in a small house in my son and daughter in laws back yard. She takes me to all my drs appts and checks on me constantly. They are amazing, my fear is what pain this is causing them. Caregivers do not have an easy path and my heart breaks for all the tragic stories I have read on here. I plan to do my exercises physically and mentally on a regular basis. Am truly enjoying this site, lots of good input. God bless you for your caring❤️

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Thanks for participating in the clinical trial. We are here in Nebraska and had information on a trial but my husband with PSP has a pacemaker and was eliminated in the beginning. I am having so much more trouble getting him around that we would not be able to travel. He is still at home but my burden is great. Let’s just find a cure for this disease. Prayers for you. Nancy

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Yes I can only imagine the stress placed on you. Just keep your prayers going and trust in the Lord to see you through. I believe the trials we endure only make us stronger and there are always reasons for what we face . We may never know the reasons but God does , prayers and hugs my friend❤️

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I think you sound wonderful!

Good luck with the trial.

We are all here for you.

Sue x

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Thanks so much, it’s so good to have friends to chat with and express our feelings.❤️

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FaithlyHopeful,

I had my 5th infusion on Thursday and I can only guess that I am receiving the low dosage amount (2000 mg) of the trial drug as I'm not regressing but don't see improvement. I have difficulty with balance, fall frequently & use a walker 24/7. I am glad to hear that you are having physical therapy because that has helped me tremendously.

I wish you luck on your clinical trial.

Kathy

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Thanks, also wish you luck. I am just hoping I don’t get the placebo. You are on 5th infusion, maybe it takes time for Improvement. My prayers go with you. Hugs❤️

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