My husband is currently participating in a clinical trial in the U.S, and we are thrilled to be a part of helping to find a cure for this dreadful disease or at least stopping the progress of it. Some of his symptoms have improved and he feels well, the trial is non-invasive and if given the opportunity I would recommend joining at the nearest test site.
Sign up now!: My husband is currently... - PSP Association
Sign up now!
Written by
Donnasue1
To view profiles and participate in discussions please or .
Read more about...
36 Replies
•
Hi, there recently are many more clinical trials for PSP presenting themselves here in the USA. It is encouraging to hear that your husband is improving.
Questions: 1) How long has your husband been DX with PSP?
2) When did any type of neurological symptoms first appear and what were they?
3) where is the clinical trial being administered?
4) Who recommended your husband for the trial?
5) HOW, what symptoms have improved and how long before you saw the improvement
6) What is the name of the university or pharmaceutical company that is conducting the trial?
7) What is the name of the antibody or (?) being administered?
Thank you, Los Angeles, CA, USA
John was diagnosed two years ago with Parkinson’s and soon after with PSP. I believe he was presenting symptoms a year before being diagnosed. He also has CBD which was the first symptom I noticed. His left arm was involved, and has become rigid over the last two years. In the beginning I noticed that when walking he was not swinging his arm with each stride. It took some complaining to get the doctor to finally give him an MRI (I was afraid he had had a stroke,)Which brought us to the first diagnosis. Parkinson’s. He did not respond to the Levadopa-Carbadopa and our daughter who happens to be a nurse sought out a neurologist at her hospital ,the University of Chicago and the doctor had been working on PSP for 10 years.
He has been in the clinical trial in Chicago and had also been accepted into the U of C SanFrancisco which began around the same time May,2017. We chose the U of Chicago because of the doctor and the mid-western location.Almost from the first infusion he felt that his left arm was feeling like a part a part of his body again. His facial expression relaxed and his personality improved being more involved in life. Although this is a blind study conducted by the pharmasutical company we feel certain he is receiving the medication.
Hope this information helps, I do not know if I am at liberty to divulge the name of the pharmsutical company, but if you are on the PSP site I am sure you can find out.
Good luck!
Thank you! How encouraging to hear of the specific symptoms (his arm, his facial expression, his personality improvement) where you see improvement. It gives me hope. I am sure that it will give others who read this site, and this posting, hope too.
My son died, 55 years of age, May 4, 2017, of PSP.
So sorry for your loss, 55 is much to young to have to go through the progression of this terrible disease. My husband is 83 years old and wants to make sure no one else has to receive this diagnosis without hope. We know there is hope for the future and a possible cure. I know many people chose not to participate in a clinical trial, but it is so worthwhile and the only way a cure will be found. Worldwide there are only a little over 100 people participating in the trials.
Hi Donnasue1,
Is your husband participating in the monoclonal antibody study with monthly infusions of the drug ABBV-8E12? The information regarding this study is available to the public on clinicaltrials.gov website, so I don't think there should be a concern about discussions here.
I am asking because my husband may have the opportunity to participate in this trial in Georgia (USA), and I am very encouraged by the positive response that you and your husband feel he is having.
My husband (age 69) was diagnosed with Parkinson's in late 2016 and then with PSP in mid 2017. Carbidopa-levodopa caused him to have significant shortness of breath and was discontinued last August. He has significant problems with balance and worry over choking while eating is increasing. He has had physical, occupational, and speech therapies, but his condition is definitely progressing.
Anything more you can share is greatly appreciated.
Best wishes to your husband and you because I KNOW this is not easy.
God bless!
Teresa
Yes, he is in the study with Abbv. If your husband qualifies for the clinical trial, I would recommend starting as soon as possible. The clinical we are involved with began last May, and we had to wait almost one year between diagnosis and the start of the trial which was heartbreaking as the progression continued for that year. John does not have any trouble with swallowing or talking, but his balance and ability to walk un aided is compromised. He wears a belt around his waist and we have put rails up in the bedroom and bathroom so that he can get up and walk to the bathroom during the night. I follow behind as the risk of a backward fall is great.
Stopping the progression of the disease and the improvement in his well being has been worth every minute of the trials. We travel from Florida to Chicago once a month and he receives the infusion, which has caused no side effects or discomfort. In fact he feels better afterwards. We are starting physical therapy again and I found the occupational therapist the most helpful in dealing with this disease
It is important that you are your own advocate and research everywhere this treatment will be available. Good Luck.
Take good care of yourself, and God bless you both.
Thank you so much for your reply.
I am a nurse practitioner and know very well how important it is for patients to advocate for themselves. I applaud you for recognizing this, too!
Balance and falls, along with slowed movements and rigidity were Henry's earliest symptoms. Problems with speech and swallowing have presented in the past 6-8 months. We found therapies to be helpful and received good advice on measures to employ at home. I anticipate that we will return for more therapy in a few months. He walks outdoors about 2.5 miles per day and rides an indoor stationary recumbent bike. Although balance is an issue, he does quite well walking in the open outdoors where there are no obstacles to navigate around, unlike indoors. I also make the nightly trips with Henry to the bathroom because of the fall risk.
I hope that you continue to see positive results in John.
Take care,
Teresa
Walking 2.5 miles is amazing. Fear of falling has curbed my husbands walking unaided, and he has not been able to master the cane. He is still taking the carbidopa-levodopa as part of the trial. There can be no medication changes to begin the program, and he had to stop taking a blood thinner in order to qualify. The danger of a head injury from a fall was greater than the danger of a stroke. Also part of the program is a lumbar puncture to measure the release of tau in the system which also could cause a bleed.
Donna
Teresa,
May I ask where in Georgia you live? We live in Aiken SC and my husband sees the doctors at the Movement Disorder Clinic at MCG (a/k/a Regents, a/k/a Augusta University 😉) in Augusta GA. He was diagnosed with Parkinson’s six years ago and just diagnosed with PSP. Bob has always been willing to participate in any research available but has only been qualified for one project so far. Now that we have confirmed PSP, I do hope he can find something geared toard his true diagnosis.
Kind regards,
Dorie
P.s. We are just going to the doctor tomorrow to discuss this new diagnosis ... I appreciate your comment about the carbidopa-levodopa having ill effects. I have never felt that carbidopa-levodopa was doing its job so we will definitely be talking to the doctor about medication!
As I read this to my husband, he did remind me that I would often ask him, when I saw the blank stare face, if he took his medicine. So, obviously I did find that the carbidopa-levodopa had some effect. I guess I should say that I was frequently disappointed in the fact that we could never find that even keel of new normalcy.
DorIe,
We live in Evans, GA, not far from you at all! My husband is also seen in the Movement Disorder Clinic at MCG.
Would love to make contact with you by phone, if you are willing. I can be reached at cell 706-339-6354. I rarely answer unknown numbers, but please leave a message, and I will return your call.
Teresa
Great! I will try to reach you later today!
Helllo there,
I was currently recruited for a double blind trial, with a pill that should diminish the amount of falls.
I will start with the pills on February 16 and I can’t wait to help out with this trial. Of course, I might just get the placebo pills, in that case I hope that others will show that this pill real,y helps,
At the moment I have to send in a weekly chart on which I mention the amount of falls I have each day, and then after these 4 weeks when I get the pill ( which I hope will be the real McCoy) I should be finding
A difference, we’ll,i’ll Keep you posted. Good luck with your trialj,
Anne Baer
And good luck with yours...where are you?
i am in the Paris region (France)
I am delighted your husband is responding to treatment ! My mum has been put forward for a trial in Manchester with a specialist from the States . I am hoping she will be selected ! I am pushing and pushing for this!
Love Jude
DonnaSue. My husband was just accepted to the Biogen anti-tau clinical trial at UCLA. His first infusion is 2/27. I found getting passed was fairly long and grueling. (Poor guy was wiped out afterwards.) 1) Within 3-5 years since diagnosis ( he just got in under the wire) . 2) 2 hours+ of cognitive tests. 3) Walking with minimal assistance. 4) Blood draw and lumbar puncture. MRI. etc. This is also a double blind trial that will last for one year, with an infusion every 4 weeks. So we wont know if he is getting the drug. I hope he does and that we get noticeable benefits as your husband has. A really positive thing for me is that Margarita (enjoysalud) will visit with me at the hospital the day of infusion. Such a joy!
So happy Margarita will be with you. She must be a saint after all she has been through.
Wonderful news. Our prayers are with you. Please keep posting with the results of his treatments. Sounds like the same clinical trial we are participating in.
Can you share the website, please?
Cuttercat
We live near Chicago, but I doubt they would be interested in my husband , as his disease is pretty advanced . Mayo confirmed that he has developed immogloblins that are causing more inflammation , so perhaps this treatment could give him some relief.
It is wonderful you are able to be part of the study. It brings us all hope. Best wishes to you and husband . Please keep us posted.
How are you doing, Karyn?
I’d say we’re treading water. Going nowhere, just staying afloat. Trying to find ways to transfer easier. Trying to seek equipment that may help. So much to do and think of. I find myself very anxious lately. Thanks for asking .
How are your days going ? I hope you are able to find some joy in each new day💜
Karyn
We are OK - still worried about a bathroom. Are you getting your husband in to the bathroom?? What are the logistics of getting in there on time and on the pot!?????
What transferring is going on??? Are you camped in the living room yet? You are just a step ahead of us , it seems, and I am still on the fence with tearing up the house for a toilet I may not be needing anyway if I can't get him to it😟😐😣🤔
Dan is no longer able to get to the toilet. He has little feeling when he has to go, and is also not quick to communicate. Once this week he asked to get to there, but I had no one here to help me. That is the first time he asked to go in a month. This is new. He was still able to be toiletted in Dec. He did have the flu last month.
We put a hospital bed in our living room a month ago. We still took him upstairs most days, especially when 2 of our sons were here. Sleeping alone upstairs was a sad transition for me. In the past couple weeks we have adjusted to him being downstairs . It’s not great , but SO much eAsier. I believe it is probably good for me too. I have a nice monitor to watch him. I can even hear him breathing if I listen closely.
Dans transfer is now a two person job. We have recently been given physical therapy at home. Dan’s one leg is very rigid, but she says the one still has some tone. They are hoping to get him to be able to pivot some . It is sometimes possible to get a home healthcare worker to bathe etc, while getting the physical therapy. Unfortunately we have been denied because he is not a safe one person transfer. I have never done much movement therapy with him. I did nit think it would help much.
I also was very concerned about an easily accessible bathroom. That ship has since sailed. I wonder if Dan is unique in his lack of feeling when it comes to his incontinence.
We are struggling to find a device to help transfer him. The physical therapist feels a stand Aid may work for now , but no idea how long. The ones I have seen are exspensive if it only works a few months. I’m still looking into that. We also need a high back comfortable wheel chair. He could be wheeled to the table and in nicer weather he could be wheeled outside. Now he is transferred to a recliner where he usually sits all day.
I hope to get a ramp to get him out easier as well as an older used mobility van. Even if I only use the van for a couple years, it will improve our lives a great deal. Unfortunately , the price is high, insurance et.
Please feel free to ask any question . I enjoy hearing from you.
Karyn
Your reply has helped immensely. Thank you - I am interested in those so quickly sailing ships. Movement therapy for us continues to be getting up and down the stairs. I don't see it lasting much longer. Jack pretty much never gets more than several feet before having an accident so he wouldn't be getting to a closer toilet either.
Grampa has slept in his "snoring room" for a long time😆 And I in my first "my own room". I relish in sleeping alone. We watch TV together, then I skip across the hall🙂I am picturing myself in the living room with him, however. If I were sure he couldn't get out of the bed, maybe I would hop into my room - with your monitor idea.
I needed a large strong chair with arms for Jack - he had broken three already! I asked my family on Facebook if anyone had such a chair and darn if one of Jack's cousins didn't have two chairs on their way to a consignment shop😃 They were so excited to give them to us, They even delivered them to the house!!!! Just one idea for getting what you need. You never know who has exactly what you need sitting in the basement?!?! Your church or a friends church may be a great place to ask around for that great chair you need.
At this point Dan realizes he cannot get up alone. The hospital bed has sides so he cannot fall. However , with this darn disease, that could change tomorrow .
Dan is not unique in his lack of feeling the need for a bathroom. Although our diagnosis is CBD, I could relate to your sharing quite a bit.
Michael had been asking to go to bathroom or for urinal. I would rush for the urinal but 99.9% of the time, it was too late. I believe he felt nothing until the urgency hit and then it was too late.
He is now in long term care in a nursing home. We didn't move to the downstairs in time and he fell down the steps and has not walked to any degree since. I'm glad you have already made that move.
The day he fell I called the contractor to put in a handicapped bathroom and bedroom downstairs, never considering that he wouldn't be home again. I now have them completed and unused.
I wish you and us all wisdom and strength.
Liz
Try contacting the U. Of Chicago neurology dept. if your husband is able to walk a few steps on his own, it is worth a try.
Thanks. He is not able to walk at all anymore. I just got a physical therapit’s to come in twice a week to try to get him to a one person transfer. At this point he considered a two person assist. I cannot even hire caregiver as they feel it is unsafe for one person.
It’s sad because I really think there is something out there that may help him.
Have a great week.
Dear Karyn, after the current trial is over, I do believe they will be able to put the drug on the market. I know it has been fast tracked by the FDA. Stay strong i know this awful disease is not just one person going through the progression, it is also the caregivers and loved ones.
Peace be with you,
Donnasue
Not what you're looking for?
You may also like...
Fed up with this now!
ambulance, I spent the whole night last night by his bedside in the nightmare place we call A&E, he...
Seeking Clinical Trial for CBD
list for a clinical trial? I don't care where it is. Does anyone have an idea of trials coming up...
Azp2006 trials for PSP
Has anyone been to the azp2006 clinical trials for PSP? Just wanted to get information if at all...
In Hospice as of now.
He’s gone now and resting
And now for our next trick
One last picture, for now
