C2N Clinical Trial - Not an option for my wife

Well, we travelled to Dallas, Texas this past week and it wasn't a pleasure trip by no means. We arrived in Dallas last Sunday and the flight was uneventful. Once we arrived at the hospital where we were to meet the doctor the following day to see if my wife would qualify for the C2N clinical trial for PSP, she began aspirating on her thickened liquids and a few bites of food. They had put us up in a hotel-type room on the top floor of the hospital. I went to their lobby shop and got a few items for myself, and unfortunately I gave in and let my wife have a couple bites of the chicken that was on my salad and a small bite of a cookie. Normally I try to never eat in front of her, but in a 1-room hotel, my only other option was to eat in the bathroom, or the loo as some of you call it. :-) Well, she began grunting and gasping for breath for about 2 hours, so I finally decided to take her down to the lower level of the hospital where their Emergency Room was located. I failed to bring our portable suction machine with us on the trip, as it's rather bulky. So after explaining the situation, they put us in a triage room and I began using their suction machine built into the wall. The ER doctor finally came in and pretended to know what PSP was. He kind a scolded me for letting her have some food (just what I wanted to hear). He ordered a chest x-ray and they hooked her up on oxygen. They also taped an oximeter to her finger, which my wife despises. After about an hour, she managed to get it off her finger. They later attached it to her earlobe. That lasted about 30 minutes. Her O2 wasn't really that bad, usually hovering between 94 and 97. The chest x-ray was taken and didn't reveal anything in her lungs. It was now past midnight and I was ready for us to go back to the room, knowing she would eventually settle down (been there, done that). The young ER doctor wanted to have her admitted for observation, but I refused. I had told him of our important meeting the next morning in regards to the clinical trial. He said we could leave, but it would be against his medical advice. So back to the room we headed! :-)

The next morning, my wife was still really out of it, but was no longer aspirating. We met with the doctor and I could tell from her expressions that she felt my wife was too far gone with this disease. They gave her the mini-mental test, and unfortunately she only scored a 13. They wanted at least 17. And her score on the PSPRS (PSP Rating Scale) was over 60. They wanted it to be under 50. They also wanted her to take 5 steps with a regular walker or cane. We didn't even bother with that one. She was using a weighted walker (U-Step) after the second year of this diagnosis and hasn't been able to use even that for the past couple of years. She moves just fine by us locking arms around each other's waist. So we ended up flying back home that night and she didn't have to endure the rest of the testing (a MRI brain scan and a Lumbar Puncture to remove some spinal fluid for testing). The doctor said she would email the drug maker to see if she could get a "compassionate use" dose, but the doctor was pretty doubtful they would agree to provide it.

I really wish I had better news to report. I was so excited this past month, thinking this could be the cure for her and for the many people around the world that are struggling with PSP. I really feel like someone punched me in the gut. My wife has been going down hill fast these past few weeks. I find myself crying (outside of her view) most of the day. I consider myself a pretty strong guy (6'2" and 210 pounds), but this one is whipping the crud out of me. Like the 1970's song goes, Love Hurts.

Keeping the faith and waiting for God to open the next door .... Ketchupman

15 Replies

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  • Oh Ketchupman, what an ordeal; the long journey, the choking and then having to fly back home with no trial. I'm not surprised you cry. It's so hard seeing someone we love suffering and not being able to do a thing to make them better. More comfortable but not better. I know that no one on this earth can make C better even if a cure was discovered today, he is too far down the line but I do know that one day he will be free and in a better place. Someone text me today asking how things were. My reply, things are progressing downwards here but we are both coping with each new challenge....just.

    My prayer is that we all cope with each new challenge, carers and sufferers alike as sadly, there are still a lot to come.

    Sending you a big hug and praying things look better tomorrow.

    X

  • Thanks NannaB. I always love your posts. They truly encourage me. Big hug back at you.

  • Keep your faith - supposedly The Lord does not give us more than we can but again

    it sure is hard. All these tests are exhausting to the patient and the caregiver. Take strength that you are not alone in this battle/challenge and be assured you both are in our prayers. I too cry everytime I leave my husband it is heartwrenching. Fortunately he is in a care facility and is well cared for but I still miss him and see a big decline in him. That's life - so hang in there and stay positive - I have got a lot of strength from just reading all the responses/reply and it helps me along the way. Good Luck and God Bless

  • Thanks for the encouragement. I keep repeating "I can do all things through Christ who strengthens me " whenever the going gets tough. And that is has.

  • Ketchupman so sorry to hear your news, sending you a big hug. Yvonne xxxxxx

  • Sorry to read of your negative experience, when you had been so hopeful.

    It is so exhausting.

    I'll join Yvonne with a hug Jean xx

  • So sorry you had to go through that ordeal with no satisfactory outcome. Sending you my best wishes and pray you will continue to get the strength you need to keep going. Love, Nanny x

  • You are an example of love, and faith to us all. Your wife is blessed to have a Carer like you. God bless.

  • Thanks! And I am blessed to have her in my life. I feel like taking care of her allows me to be just a little more like Jesus.

  • Oh Ketchupman...I am so sorry.....I have no wonderful words except for the fact that you are keeping an open mind and haven't just put your hands up declaring that there's no use to even try. You love your wife so much to bring that little ray of hope into her life. You need to give yourself a big hug for that. And you deserve to cry every tear you want. ...Iwant you to know that you have helped me as well as others I am sure when you discussed to PEG or not to PeG and the how-to's of that machine !

    doing all of that for your wife and just the day in and day out's of helping your wife proves that you are more a man than 70% of husbands who end up leaving their wife and family for far less of a reason. and of the 30% who do stay you are more of a man than 70% of them who would not work so hard for their wife. You've got my vote for husband of the year....To be fair, ALL OF THE HUSBANDS ON THIS SITE ARE UP FOR THIS HONOR...but KM know you are a wonderful husband friend, man.

    AVB

  • Thank you so much for those kind words. Ketchupman

  • Meant every word!

  • I cannot believe they did not specify the requirements of the trial before you made that journey with your wife you must have felt so disappointed and let down x

  • Indeed. I provided feedback to CurePSP, who plans to address this with the drug maker, as they are trying to make these clinical trials more user friendly.

  • Ketchup man I am so sorry your wife is not doing well. It must have been so disappointing that she did not qualify for the study. You are right God will open another window trust Him He will give you the strength to go on. I will pray for the two of you. God Bless you both.  

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