Thanks

I want to thanks each of you with wonderful answers u gave me for my post "Help with Psp " . I lost my loving husband on August 31 st . He was fighting with Psp last 4 years . This horrible Psp took away everything from him like speech , walking , sight , swallowing , writing . I had a very hard time to watch him suffering. Last week he has trouble with breathing , but now he is in peace with God . All of u will be in my prayers, God will give strength & patience to all caregivers & all patients . It is very very hard to say Goodbye to your loved one but I am glad that he is not suffering anymore . We had wonderful 44 years of marriage together so I will live with all lovely memories plus I had big support from my two daughters & two sons . God bless u all & again thanks a lot .

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  • I am so sorry you lost your spouse to PSP. It is horrible. I have PSP and quite fearful of the choking, and swallowing symptoms. I have been diagnosed for just over a year but looking back I have had the symptoms for 4+ years. I can no longer read, drive, think correctly, walk without losing my balance so use a walker at all times. I am fortunate to be in a study for a possible drug for PSP. My swallowing, slurred speech and choking have improved but other things are the same or worse. I am hopeful they are on the right track with this drug and others won't have to loose their spouses or have to watch them suffer like you had to. I will pray for you to have the strength to get through this. Love, Mary B.

  • Good luck to you and God Speed that you may be the one who finds the cure....

    What study is it?

    AVB

  • Please see my reply under Ketsupman.

  • Dear Mary, I'm so sorry you have this awful condition and pray that the study you are on has positive results. Your typing is amazing and I hope you can continue to communicate in this way for a very long time in the future. It is probably an effort for you but to be able to speak in this way is such a good thing.

    With my love and prayers.

    Nanna B

  • Please see my reply under Ketsupman

  • Which drug study are you taking part of? Thanks for helping find a cure!

  • To abirke, NannaB, Ketaupman, daddy's and anyone else: At first I was in the "randomized, double-bind, placebo-controlled, multiple ascending of IV administered BMS-86168 in patients with PSP. Any of us put in the study had months of pre work up done before we could participate. We all had tests done likeMRI's, lumbar punctures, lots and lots of blood work, and multiple psychological and memory tests, and eye movement studies. I don't remember all that we did but I do know that they were so tiring. We have to have someone with is at all times who also has to consent. About 48-60 subjects are expected to enter the study in theU.S. Of which approx. 10-12 are at UCSF. The other sites are spread around the US. The odd thing is we are never put in contact with each other in the study. Each time we go for the infusion of the drug or for tests, I am checked over by a neurologist. They (there are 5 in the study) are all wonderful. Each infusion takes an hour and 2 hours after to make sure you are OK. So how long it takes will depend on what else you need to have done that day. The purpose of this study is to see how safe and well tolerated the drug BMS-986168 is at different drug amounts and to measure the amount of study drug in your blood and (CSF) after taking the drug. I need to have the LP (lumbar puncture) done under guidance of a Ct scan as I have had 2 surgeries on my lower back. In Jan of this year we entered the open label part of the study. In the first part of the study, it was randomized as to who got the drug, and only BMS knew who got it. BMS stands for Bristol Myers Squibb. But now in the open label part everyone who is in the study gets the real thing in different doses. I am assigned to get the low dose, darn it. I must remember that more is not always better! They have not had any major side effects in anyone. So far so good! The study remains voluntary and we can quit at any time. The above info has taken me hours compile. I do hope you are able to get the gist of what I wanted to type. Please just ask me if you have questions and I will do my best to respond. Am I getting benefit from the drug?? My swallowing, coughing and choking have greatly improved. I do fall more, my brain acts up at times so I'll seem worse for awhile but then other times I seem better. The worst parts for me vision problems, falling, balance issues, strength and memory. Ugh! I have other issues but can't. Remember them now. Good luck to all and I love reading what you respond to others.love, Mary B.

  • Thanks for writing, Mary. I appreciate how difficult writing must be and am grateful for your efforts. It's all very interesting, and hopeful. Why not hope, anyway? Love, Easterncedar

  • Thanks for giving us such a great description of what's going on with this study. I'm sure this can be exhausting, but hopefully worth it. I know when my wife was in the Davuentide study, she had to do similar things, but fortunately it didn't require the lumbar puncture.

    Keeping you in my prayers and praying this could be the cure for all mankind.

    Ketchupman

  • Thank you. Mary B.

  • Hi, I'm 3+ years into this disease myself. I share many of the same symptoms that you're experiencing and then some. Could I ask what study you are participating in, and is this an orphan drug?

  • Please see my reply under Ketsupman

  • Dear Ashokuma, I am so sorry for your loss....we never really got a chance to talk but I do pray that you find solace at this time and will soon be able to overcome the loss of your dear husband....right now is time to grieve....Keep us here and talk with you need....we are all hear for you

    Sincerely,

    AVB

    The Lord is good, a strong hold in the day of trouble, and He knoweth them that trust in Him...Nahum 1:7

    He knoweth the broken in heart and bindeth up their wounds. Psalm 147:3

    Come unto me all ye that labor and are heavy laden, and I will give you rest. Matthew 11:28

  • So sorry for your loss Ashokuma. Your husband is at peace now. God bless you and give you the health and strength to go on by yourself.

  • May God bless you and give you His peace at this sad time Ashokuma. Your darling husband is now free from the torment that is PSP. I will pray for you at this time of grieving and hope that you and your loving family will find peace in the happy memories you share.

    Sending you a comforting hug.

    Nanna B

    X

  • I am so so sorry to read your post . sending you and your family my love xxx

  • Ashokuma, so sorry for you. But your husband is better of now. My sister has psp and is going downhill fast. We are taking her on...as i see it.. her last trip. What a terrible disease.. My heart is so broken seeing her like this. From time to time i get the feeling that she is not there anymore... and then to my surprise see she does something that makes me believe that she is inside that body... God help us.... You are done with this now...you just need time to heal. When my father suffered from cancer, i prayed that God must take him. So his suffering can stop. When he died, i was heartbroken but knew that it was the best for him. A person has time to get to terms when someone this sick, dies. All of us are looking after our loved ones, and can say, with a song in your heart, that we have no regrets.

    Thinking of you

  • Thank you for all you did for him.

  • Dear Ashokuma so very sorry in the loss of your hubby,yes this terrible disease does Rob everything. Blessing to you and your family. Nettie❤️

  • Dear Ashokuma,

    I'm so sorry to hear of your loss... My deepest condolences to you and your family. Sending you a big warm hug.

    Much love

    Zsha

  • A, It's twice as heart wrenching when someone on here loses their loved one. We feel your pain and know in our hearts we will be experiencing it as well sometime in the future. It seems so random who it takes down next. Not necessarily one who has suffered the longest or had a certain progression of symptoms. I hope you and yours will take comfort in the fact that we are all grieving with you. Please go easy on yourself. Grief does not follow a timeline. And let your children continue to be a comfort to you and you to them. You have come this far, you will be ok.

    Big hugsJ,

    JG

  • Ashokuma

    I am so sorry for your loss. I lost my husband Les to PSP on August 8th. May they (our husbands) both rest in peace and free from pain and all the PSP suffering. It is very hard to say goodbye so instead lets say until we meet again. We are both blessed to have a big support system--they have come to my rescue again. A huge hug my PSP friend. Peace be with you.

    Nikkie

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