Hello fellow PSP warriors . I need some support. I think my husband's journey is nearing the end. He has declined so much lately. I have made the decision to donate his brain. I need to know what happened. My kids need to know its not genetic. Maybe someday, someone can be helped with the research. He would want this, he would want to help. These are the thoughts that run through my mind.
Robin and her colleagues are amazing and helping me with the process. They are compassionate and so loving. However, its so overwhelming. And so horrible to think about. My friends try to help, but its too much for them. Is there anyone out there with wisdom for me? Has anyone been through this process? Is getting the final answers worth it?
One step at a time has brought me here, but whew, this is a big step.
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Gingerw3
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The idea to donate your husband's brain is a wonderful idea. My mom has also chosen to do that when she is no longer here. I believe that's a big way to help figure out more about the disease. It's a hard concept to know that you're making a decision for a loved ones organ, but I do think for all of those involved with PSP and CBD that it is a beautiful thing for those who will face this in the future. Researchers need all the help they can get.
My mom is not at the stage your husband is at, but I have noticed a decline, and I don't know if any of us caregivers can really prepare for the end. A lot of emotions come with that, but even more so when you have been witnessing the progression over time. I truly believe that we grieve over time, during the progression, and then when it is time for them to depart we have to grieve all over again.
There will be so many emotions and my only suggestion is to make sure to talk about how you feel. If it gets too hard to digest I would suggest speaking to a counselor. Friends and family are always good to lean on, but sometimes we need help from an outside perspective.
My thoughts and prayers are with you during this stage. Keep the good memories flowing, keep reaching out here, and if you need answers - get them. Do what YOU need to do for closure. I know when I have to donate my mom's brain, it won't necessarily be answers for me, but hopefully - for someone else who gets this diagnosis.
Hi, Ginger - My late husband donated his brain to the Mayo Neuro Research Laboratory in Florida. The autopsy confirmed his CBD diagnosis which was affirming in a multitude of ways. Do you live in the US? There is information on the Cure PSP website on the brain donation process. The paperwork does have to be done in advance as the window for tissue collection is limited after death. If I can be helpful and you feel comfortable sharing your email address, I can contact you with more specific details. Once you have the arrangements in place, you can focus on your husband's care and your children's concerns. Best wishes, Paula
Ginger, That is a very noble thing to do. My mom wanted her brain donated to science bc she suffered from restless leg syndrome for decades. She had all of the paperwork, we all had copies, and my parents carried it with them at all times. But when my mom passed away while they were on a trip, my dad just could not do it. It takes a lot of strength. I hope you are able to do it, but don’t “beat yourself up” if you find that you can’t when the time comes. Blessings.
Hi Ginger, back in 2019, I asked my Mum who had psp, if she would like to donate her brain, I'm not sure if I exactly said it that way or even if she fully understood what I was saying, but she said yes, so I rang a number I had been given, talked to some one about the process, then I would ring back nearer the the time. When we got to the time Mum had suffered in so many ways, she looked dreadfull, all the symptoms that you get, I just looked at her and thought you have gone through enough, I couldn't put her through any more, so decided against the removal, then a few months later, I was very disappointed that I didn't go ahead with the removal, I could kick myself now, I do so much wish I had gone ahead and donated, I think I was in such a state of sadness, that I felt it was unfair to mess with her body, now as I think about it, Mum always said when I'm gone I'm gone, she wouldn't of been bothered it was more about me at the time, so if I had to do it again I would I would just do it, sending love to you and your family, Julie xx
I am in the UK and recognise there may be some differences. My husband died of PSP nearly 2 years ago and donated his brain. The whole process went very smoothly and respectfully. Family who saw him in the funeral home had no idea he had donated. When we signed consent we were asked if we would like follow up information and approx 6 months after his death I was contacted by the Brain Bank to confirm if I would like feedback - this was given via telephone at a time if my choice and followed up in writing. Personally I found the results helped me make sense of some of the challenges we faced and I posted here about my positive experience.
I do recognise it is a very personal decision - however I am pleased I was able to follow my husband’s wishes.
Ginger, I am sorry that you are facing a great loss. My husband passed last year and donated his brain to the Mayo Clinic Brain Bank in Jacksonville, Florida. Rachel Harwood -Lapaille, who is the administrator for the Brain Bank, could not have been more helpful. What was helpful, beyond the research that his tissue donation will support, was the information that he did not have CBD but a variant of Fronto-Temporal Lobe Degeneration, a variant that IS genetic. Dr. Dickerson, who heads up the brain bank, and several colleagues discovered in 2012 that there is a genetic mutation associated with familial forms of ALS and FTLD. The news is difficult to hear, as our children have a 50% chance of having this autosomal, dominant gene and 2 of our children are now undergoing genetic testing for this C9orf72 gene. My husband's siblings are, as well, and if they are carriers there are numerous children and grandchildren who might be carriers. If you have the gene, you have almost a 100% chance of developing some form of FTLD in a lifetime of 80 years. So, it is heavy and we are struggling with it now. Marilyn
Dear Ginger.I am so sorry that things are progressing. It is so hard as the end is in sight to realise that you just have to stand back and just be there for the person you love, without being able to do anything.
I don't know if you are re in the UK or not. I am. There is good info on the PSP website about it.
My husband donated his brain. He had wanted to do so as soon as he knew of his diagnosis, especially as he was a biochemist. Sadly the results [which can take over a year to be fed back to you] will not tell you if it is genetic or not but all research is so important because it helps to find causes and maybe solutions to CBD and PSP.
It does take a while to organise though and they also need to have the brain within a short time frame after death, so if your husband does decide to donate his brain then you will need to make sure that all medical staff involved in his care are aware. As Tippyleaf says there was minimal signs of anything being taken when I saw him at the funeral home so there was no reason for me to be scared about this. I am so glad that his wishes were able to be fulfilled.
I can understand about your friends. That is why this forum is so important.
Hello thereFirstly let me say that you are definitely doing the right thing.you will also in the future find comfort and strength knowing that your husband is helping people suffering in the future.I don't know where in the world you are ,but my dad who lived in the UK donated his brain to UCL and they were very supportive,you have to advise your doctor as they have to react extremely quickly as there is a very short time frame for dealing with this and the undertakers need to be made aware at the same time .sorry to be so blunt but we found that was always the best way to deal with dreadful issues .
You can be proud of yourself and your husband too that without him there will not be a way of trying to beat this dreadful disease.They are pioneers to help a better way forward .
Sending you all our best wishes and thoughts at this extremely sad and difficult time .
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