Clinical trial information

[katras]

This is my first post. Diagnosed with Psp a year ago. I’m being screened in 10 days for the clinical trial sponsored by AbbVie & would like any positive or negative comments by other participants. Thank you in advance for sharing personal information.

[enjoysalud]

Katras where do you live? Share a bit more about yourself....your age, your profession, live alone or with others, etc etc?

I live in Los Angeles, CA, USA. I was the caretaker for my son who had PSP. He got his first symptoms March 2014. I wrote a post on his experience of PD to PSP. He did not participate in any clinical trials. He died May 4, 2017. Shortly thereafter came info on the BIOGEN and Abb-Vie trials.

I think you are wise to participate. Two people who contribute to this site are involved in the Abb-Vie trials. Their names are TERESA1988 and DONNASUE.

I would encourage you to get acquainted with this site, learn how to navigate it.

I believe teresa posted with the title CLINICAL RESEARCH STUDY FOR PSP. if you put that title in the "search PSP association" bar at the top of the page it should come up.

My son is not here to benefit from the trials, but it gives me HOPE and ENCOURAGEMENT to hear of the experiences of those participating. I hope that you will be regular in sharing your experiences with Abb-Vie.

I think you are wise and VERY fortunate to get into a trial this early in your diagnosis.

Blessings, Margarita

[katras in reply to enjoysalud]

I am so sorry for your loss, Margarita. It seems as though your son’s disease progressed very quickly. I am learning what a cruel disease this is and am truly moved to tears when I read what the caretakers experience in the later stages of Psp.

I am a 74 year old retired dental hygienist, living with my husband of 51 years near Portland, OR. I was diagnosed last May at the medical school in Portland & that is where the clinical trial is taking place.

My first backward fall was in May 2015 but chalked that up to bad hips that I had replaced that year. It wasn’t until November of 2016 that I started having trouble walking & my husband & I knew there was something seriously wrong. After several different neurological exams, this is my diagnosis. I am using a walker, but otherwise have no other symptoms, so I think that is why the current neurologist recommended me to the trial. Any information would be greatly appreciated.

[enjoysalud in reply to katras]

Hi Katras, I am familiar with Portland. My daughter lives in Tualatin. She and her brother were 15 months apart. He was the oldest. I have two grandchildren at the U of O in Eugene. I am currently 77 years old.

Katras I have GREAT HOPE for you. Just in the past 4 years much information has been learned about PSP. If you do not get the placebo (double bind study), and even if you do get it, I believe results will come back soon enough (2-4 years) for you to be switched over.

Please experiment with this site until you can bring up the sharings of DONNASUE (her husband has been in the Abb-Vie study since last June) and she has shared positive experiences/results with a photograph of the two of them. Also, "teresa1988".

I have posted three times, all with photos, and shared many times on others postings. The first, as I mentioned, was PARKINSON'S TO PSP....the story of my son. I think I wrote it Jan or Feb of 2017.

I urge you to walk as much as possible with your walker. Have someone walk beside you to catch you should you start to fall. My son never fell, but we were always right next to him. If you have a stationary bike do that too.

Keep positive.......................many on this site have lived far far longer than my son. It seems the older ones live longer. My son's first symptoms..he was barely 52 years old and died at 55 years. Many mention noticing symptoms before obvious ones.

I look forward to hearing positive progress after starting Abb-Vie.

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

[btuma6 in reply to enjoysalud]

Say I live in Beaverton with atypical Parkinson. I have had it for 4 years and experiencing Aspiration Pneumonia. One bout kept me in the OHSU critical care for 28 days. But the biggest lesson I;ve learned is there is nothing certain with our futures Good things will happen that you never expect. I am a speaker for Parkinson Resources of Orgon. I have one of my talks on YouTube is you search Bart Tuma It is long but worth the time

[enjoysalud in reply to btuma6]

Thank you for your response. You can read the journey of my son under the post PARKINSONS TO PSP. I'm sure you are aware that PD and PSP are not the same or even the same family.

Since you have been DX by a Neuro (????) with atypical PD I would keep close communication with that Neuro. As you have read, there are clinical trials, which I believe promising, and I would encourage you to see if you qualify.

I think the earlier, if qualified, you start the trial (Biogen or Abb-vie) the greater the possibility of slowing the progression early.

[btuma6 in reply to enjoysalud]

Yes I was diagnosed at OHSU but dont perfectly fit any box. For PSP I have the eye jerk but not all function, my swallowing is severe and as hospitalized fir asI said hospitalized for aspiration pneumonia fall backward and laterally unstable.

However I don't fit the box to fit a trial My biggest problem is restrictive lung disease which PD or PSP don't cause... or maybe so

[btuma6 in reply to enjoysalud]

Would you help me find your son's story I am interested and could well be of help to me thank you

[raincitygirl in reply to btuma6]

Hi Bart; I happened to be reading this: let me help: Go up to the Search PSP Association window on the upper right hand corner of your screen (if on computer - not sure about phone), type in Parkinson's to PSP and hit enter. That is the title of Enjoysalud's post telling the story of her son. It will bring up a list of posts and when I did it, Enjoysalud's (Margarita's) post was second. Click on it and voila!

Have a good evening.

Anne G.

[enjoysalud in reply to raincitygirl]

Hi Anne, thank you! I open my computer once a day and sometimes not even that. I appreciate what you did.

[enjoysalud in reply to btuma6]

Hi, 17 hours later here I am. I usually open my computer after lunch and then turn it off about 4pm.

Most of what I have shared about my son has been in bits and pieces, responding to others.

I tried an experiment and it worked for me. Try it and see if it works for you:

CLICK ON THE FACE (smileyface) TO THE LEFT OF MY NAME (enjoysalud). Not only will my initial intro come up, but also my three or four postings. Also, you will see "replies". Click that, and all my responses will come up. I'm unsure if it works for me because I am the author. If you have time, let me know if it worked for you.

Some people are very proficient on this site. They post youtube videos, websites, can told their font, etc. I haven't been able to do any of that. Could be my browser, not sure.

The weather here is Portland, gloomy, but no rain.

Good luck!!

[enjoysalud]

Hi, responding again. I tried following the advice I gave you and nothing came up. I experimented. At the bottom of each posting are four circles, the last one is SEARCH. Click on that one and write in CLINICAL RESEARCH STUDY FOR PSP.

teresa1988 post will come up and the shares of others who read her post.

Good luck!

[Donnasue1]

You are very fortunate to be able to begin the clinical trial at the beginning of your illness. My husband will have been in the trial for a year this June, and had already lost the use of his left arm, he was unable to move his eyes from side to side or up and down, and his falls had increased considerably. He began the trial in June 2017, and almost within the first two infusions was able to move his eyes and was able to read again. His face relaxed, and he looks like himself again. The medication is not a cure, but it does stop the progress of the disease. My husband is now 83 years old and obviously not as strong as someone younger and more physically fit when the disease manifested itself.

The infusions are painless, and he has experienced no side affects. In fact he feels more energized after the treatments. The drug company has taken very good care of the participants, with transportation,accommodations and expenses. Do not hesitate in joining the trial, there is help and you will be participating in the research that will one day find a cure for this dreadful disease.

[katras in reply to Donnasue1]

Thank you, Donnasue for the information. You have given me hope for the first time in a year. I will definitely participate if I’m chosen and pray that I’m given the drug and not the placebo.

May I ask, if there’s significant improvement in a patient during the trial, as it sounds like your husband has had, does he continue on the drug at the end of the trial?

[Donnasue in reply to katras]

Yes, we have been told that the drug will be provided for the rest of his life. We live in Michigan and Florida, and John is being treated at the University of Chicago Hospital.

[katras in reply to Donnasue]

That is wonderful news. Thank you

[Kevin_1 in reply to katras]

Good Luck

[daddyt]

Welcome to our family... wish it was under better circumstances. Hope you have thick skin, most on this site are caregivers/loved ones. They keep it real.

Tim

[katras in reply to daddyt]

Thank you. I’m realizing this as I become more familiar. I am so thankful that I found all of you.

[Donnasue]

I failed to say welcome, this site is very helpful and filled with caring loving people who are all going through this dreadful disease either as caregiver to someone we love or like you a patient who has been diagnosed with the disease. The bravery and strength of both participants is amazing. Good luck with the trial all our prayers are with you.

[katras in reply to Donnasue]

Thank you, Donnasue. I am in awe of the caregivers who share on this site. I am so new to this site that I have not seen any postings by Psp patients, but by caregivers dealing with loved ones who are afflicted. I, myself, want any information that is relevant to my future and my husband’s since he is my primary caregiver. Thank you to all who share.

[Donnasue1]

Try to follow Bargiepat, he is a psp patient travels all over and still has kept a brilliant sense of humor! Laughter is good for all of us.

[Artteach10]

Welcome to the sight and I hope you are admitted to the clinical trials. I am a carer for my husband and can not believe all the wonderful caring people here. Nancyxxx

[katras in reply to Artteach10]

Thank you, Nancy. I agree that everything I read is very positive and supportive.

[hubetsy]

Best of luck to you in the study! I shall follow closely.

My husband, C, has PSP and is fairly well along in the disease. We have concerns for our son who is 27 and has watched his father deteriorate. We worry about whether PSP is genetic. C's father was diagnosed with PD back in the 1970s. Looking back, however, his symptoms were quite similar to my husband's. My father in law died at the age of 68. He was still ambulatory and more coherent than my husband who is now 73 (C's onset of symptoms was v. late 50s).

Like others have suggested, exercise! I am convinced my C has done as well as he has for so long now because he exercised vigorously after he "retired" walking 7 miles a day until it was no longer safe. He then switched to water aerobics exercise 5 days a week, then 3 days a week and now he does a sit down PD exercise class mostly 1 day per week. He also has a strict regimen he follows daily prior to getting out of bed. (bridge pose, single leg lifts, knee to chest, double leg lifts and rolling side to side. initially 20 reps each, 2 sets -- sadly we are down to 10 reps twice if that) .

Good luck!

[katras in reply to hubetsy]

Thank you for your reply. I can’t tell you how impressed I am with C’s exercise regime, even now. I do have a physical therapist come to our house 2X a week which really helps keep my muscles from atrophying.

If it’s any consolation, I have been assured that Psp is not genetic. There is no history of this or PD in my family.

[hubetsy in reply to katras]

I hope and pray you are right about genetics. The other curious oddity is that C's paternal uncle died of ALS, another neurodegenerative disease.

I'm impressed by his regime. I should do it myself! : D

[enjoysalud in reply to hubetsy]

Hubetsy, do not forget that genes can be recessive or dominant. If PSP is a recessive gene (so few cases in the world, it makes me suspect that IF it is genetic it is recessive). Recessive means that both his father and his mother had to have both carried the gene.

I saw a youtube posted, some time ago, by someone on this site. I think it was a PSP conference. The PSP (neurologist?) presenting the research stated that PSP, CBD, and MSA are closely related. What these, and FTD, ALS and CTE all have in common is that they are labeled PRIME OF LIFE BRAIN DISEASES. One of their commonality is protein misfolding.

If you have questions I would GOOGLE your questions to get more information. However, I did not research causes until my son died. For me the time was better spent reading the sharing on this site, finding ways, to help his comfort with the symptoms. His DX with PSP was very late, almost three years past his DX with Parkinsonism.

I am not a medical or scientific authority, but a 77 year old mom who lost her 55 year old son to PSP, May2017. I posted PARKINSONS TO PSP which will give you a short history of his progression.

My son's father was DX by UCLA Neurology with FTD. He died at age 65 of FTD.

Until the medical science can give definitive documentation, I think it is useless to worry. Also, I would take HOPE from those engaged in clinical trials. I suspect, hope too, that soon we will have medication to slow the progress.

Christine47 posted (about a YEAR ago)......."A difficult subject". You might find it interesting and relevant.

[kandk]

Hi Katras, thank you for posting on this site. My husband Kurt, was also diagnosed with PSP about a year ago. He is 76. We live in Scappoose and participate in a PSP/MSA support group for patients and caregivers on the 3rd Saturday of each month. The meeting is at the Marquis Piedmont Assisted Living (library 1st floor). 319 NE Russet St, Portland, OR. 10:30 AM to 12. Most of the participants up to now have dx of MSA but recently have had a second PSP couple attending. You can check with PRO, Parkinson's Resources 503.594.0901 for more info. I encourage you to join us, it is comforting to have people to talk to who are going through the same struggle.

[katras]

Hello, kandk,

Thank you for letting me know about you and your husband. My husband & I attended one of the Marquis meetings, however, there were no other Psp patients there. We will try again. The MSA patients there were indeed wonderful and helpful.