After my husband died he donated to the Brain bank for research. I recently received feedback on the post mortem examination. This was very sensitively shared with me at a time of my choosing.
The results showed PSP and as an additional diagnosis Lewy Bodies - interestingly this had been an initial suggestion at our first Neurology appointment.
I have found these results a huge relief - it was ‘real’ the challenges we faced. The personality changes, the high levels of impulsivity, the agitation, the sleeplessness - there was a reason and no way my husband could control these things.
In the future researchers will have access to tissues which I hope will make a difference to diagnosis and treatment of PSP.
I recognise to donate is a very personal decision so not on a crusade here BUT I had not previously recognised the difference this knowledge would make to my coping in grief. I feel a huge sense of relief and my guilt over those times of absolute exhaustion when I went into full on screaming banshee mode etc are now more manageable memories.
Love Tippy
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Tippyleaf
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Oh Tippy. That makes so much sense! And Lewy Body disease is so horrid and will have skewed the diagnosis and effects of PSP. No wonder you felt overwhelmed!
I was talking to a friend here in NZ who believes his mother also has touches of Lewy Body. I told him about this site and he is not a member. I was pleased I was able to talk to him with understanding! Our walking group is part of his respite.
Must talk about brain donation to him if I am able. Am sorry my husband would not do so.
I was surprised and grateful when my husband chose brain donation. I, too, felt a sense of relief when his PSP diagnosis was confirmed. I would have been shocked if it hadn't been confirmed. I'm proud of him for choosing to help with research so that someday we may be free of this ugly disease. I strongly urge anyone facing this difficult decision to choose to donate.
Hi Tippy, I totally agree with you about the way you felt when you received the diagnosis. Colin also had signs of Lewy Bodies, although the cause of death was confirmed as PSP. I was very impressed by the way I was informed. About a week before the letter arrived, a lady phoned to ask me if I still wanted to receive it as it was sometime after Colin’s death. She said some people didn’t. She wanted to let me know in advance as she didn’t want it to be a shock. She said I could phone if I needed the letter explaining.
The final paragraph of the letter said (something like) we thank C for his donation and it will go to help others for many years to come.
It is comforting to know something good, a cure hopefully, may come out of the years of suffering.
Take care Tippy and I hope this Christmas brings you peace and joy.
Hi Tippy, I am so glad that your husband donated his brain for research. My husband has also donated his when this horrible disease has finished with him. It must be so reassuring to get an explanation for your husband's symptoms. I hope that your story will help others to donate and hopefully sooner rather than later, a treatment will be found for this horrible, horrible disease. Hope you have a peaceful Christmas. Teeker xxx
Thank you for sharing this private information. It's a help to us. I asked Sandy some months ago what he thought about this and he readily said "yes." If you don't mind, will you please share what the process was like, and the cost? I have a brochure and need to inquire about this sometime soon before I forget about it.
I'm proud of you for having the courage to do this. With all the things we face in life, this is one that none of us ever anticipated.
My husband and I met with someone from the brain bank at a Neurology appointment - she gave us an information pack including consent forms which we both signed and returned.
Time is a factor and the body has to be refrigerated at the funeral home within 4 hours of death and brain had to be retrieved within 72 hours. We then received a letter of acknowledgment. 6-8 months later a phone call or letter to say results are available if you would like them - you do not have to receive any further information if you choose not too. I asked for a verbal summary followed by a clinical post mortem report.
There was no additional funeral charges or charge from the brain bank .
Very importantly for family who saw my husband at the funeral home there was no visible evidence
Thank you Tippy. I've been reading and it probably is a bit different in the U.S. We have a fee of $800 + a requested $500 donation. I am going to get the paperwork started one of these days soon. There is a lot happening around here with changes in Sandy's condition.
Have you tried contacting Robin Riddle with the Brain Support Network ? She will help with more information. She is a member of our network here. Where in the US are you located ?
My husband, who has PSP, has agreed to donate his brain. Dr Irene Litvan, who runs the Movement Disorder Center at UCSD, has worked out an agreement with the Mayo Clinic, and there is no cost associated for this procedure. If you like, I can provide you the contact info of her clinic coordinator, and perhaps she can connect you with someone in your area.
Is the donation being made to Brain Support Network? This is the organization that specifically researches these type of diseases (Atypical Parkinsonism Disorders).
I'm checking into this today. Things are rapidly changing with my husband and I want to get loose ends tied up while I can.
Oh my gosh! How wonderful to once and for all receive a final diagnosis and also how helpful it will be for others. Thank you for sharing your reaction to the news.
My husband is on board with donating his brain as well. I’m still trying to figure out how to go about the donation. Next month we’re supposed to find out more about a trial study. If my husband qualifies part of the study includes donating his brain. If he doesn’t qualify I will research where and how. I think it costs money here in the US 🤷♀️
Thanks for sharing this Tippy. Great that the sense of closure also brought relief 👍
...On another note, it helps make sense for me of the apparent discrepancy between experts saying "delusions (etc) arent a symptom of psp" - yet the constant number of members who report delusions or impulsivity, sexual aggression, etc..... Clearly, more often than we're aware, there are multiple diseases going on.
How interesting to be given such detailed feedback did that come directly from the brain bank or via your consultant? I am interested to know as I donated Steve’s brain and received a lovely letter thanking me for the donation but have never received any further updates so was just curious. I am so pleased that it has given you some comfort though. Thank you for sharing and you did an amazing job looking after your husband, we are all only human. Have a lovely day.
Hi SarahWe had signed up for the additional information. All letters contact has been directly with the brain bank. If you would like more details when you feel ready you could contact the Brain bank and ask for more info - though recognise much harder for you to ask than it be offered.
Thank you for the information, I can’t remember what I filled as it was all done so quickly after Steve passed away but I will give them a call as I would really like to know what was found. I am doing ok good days and bad days as I sure you have too. But I keep reminding myself that I promised Steve that I would be ok and that I would do the things that we had planned to do so that’s what I am trying to do. I am not looking forward to the next couple of weeks because of the memories of the fight to get him home last year and then the anniversary of his death on Boxing Day so I have booked myself on a cruise and I go next week and get back Christmas morning so I now have something positive to focus on. It will be the first cruise I have done alone but I feel that it will be ok. Take care
I'm so pleased that the outcome of the autopsy has brought relief and some kind of closure Tippy. Donation was a subject we discussed together but something stopped me from from following it up, I can't explain but I didn't want his body messed about with after all of his suffering. He was never adamant about donating so I guess that I just followed my heart in the end. A very brave and personal choice and I'm glad you made the one that was right for you.
When I saw the social worker in the Movement Disorder Clinic, she mentioned it and gave me a brochure. I don't recall the neurologist talking about it with us.
Although Sandy and I talk openly about these life and death matters, I was hesitant to bring up this delicate subject. When I gently mentioned it, he immediately said "yes." I suppose I'll have to have his signature. Too bad. I wish I had gotten it sooner because he is going downhill and it feels uncomfortable to ask. However, no matter what I put in front of him to sign, he doesn't really ask much. Just signs his name as best as he can. His signature is just chicken scratch now.
My poor, sweet husband. As of a couple of days ago, I now just pray that he doesn't stay here much longer.
I spoke with Robin Riddle today at Brain Support Network. I will start the process with her and after reading the information again, I see that the organization doesn't charge anything. There will be charges from the pathologist and the funeral or cremation home. Brain Support Network asks for a $500 donation or more.
Yes. I assume the Brain Support Network needs donations in order to operate. And of course, the pathologist needs to be paid. As it turns out, I don't think we have to pay the cremation place.
The carers got Chris up on Sunday and so far so good! He finished his antib's this morning, so we'll see how he gets on over the next few days. The injections to dry up the secretions definitely worked. He has not got back to previous levels and his swallow is definitely getting worse. But all vital signs were good this morning when the DN visited.
I'm not sure about having a conversation about brain donation with him. I may have left it too late as he now doesn't talk and certainly couldn't sign anything off.
Take care, love
Anne x
PS This atrocious weather isn't helping either, the light levels today have bern horrid.
This was the first thing I sanctioned after diagnosis. It takes the worry away from my husband at a time when he will have enough to deal with. Once this horror gets a hold who knows if I shall be compis mentis enough to make the decision.
I think this is an incredibly brave and generous decision you have made. I hope it will give you a sense of pride knowing you will help others in the future.
Getting very wobbly now . I feel very nervous with my stick as I have had half a dozen falls. I’m ok on my rollator if the weather is good,just about manage to get to the bus stop to get the bus to the local shop,about half a mile away. I have a friend who takes me round Sainsbury’s every once in awhile ,otherwise I do my main shop online.HATE this disease which has made me a prisoner at 61. I hate that it has robbed me of my strength. I was terrified on my last fall to realise had hardly anything in my arms to push myself up.I used to do all sorts of exercise so I would keep well in old age.HaHa! But it may have helped as I haven’t broken anything yet 😆 🤞🤞hope you have a Happy xmas.Lets hope the New Year brings better things.Jaynexx
May be worth seeing a physio to get some exercises to help your core stability and strength. My hubby went to a Neuro physio gym every week - it was really helpful in maintaining strength.
It is good to get out and about the rollator will give you more stability .
I have been seeing a physio but when the tremors start,nearly everyday all day,I can barely stand up. Can’t get down on the floor to exercise. I have done some strength exercises but my muscles just won’t build up. I was doing so well after my heart attack as well. I go an activity class once a week but after a fall, I now have to do everything sitting down. Not much good for cardio,the trouble is I still think I can do things then find they are beyond me.
By the way ,are you in New Zealand? My brother is on the South Island
Tippy, what a wonderful outcome, that it should bring you such relief. And, in time, it may bring help to others who suffer the ravages of these conditions.
Dear Tippyleaf, This disease is such a dreadful way to die. My husband had an accident which left him an incomplete quadriplegic which masked a lot of the symptoms of PSP.
He was eventually diagnosed on 2nd March, 2018 and he passed away on 17th May,2018.
I live in Australia and the doctors do not seem to know very much about this disease. In fact a lot of the medical profession here have never heard of PSP. We had talked about leaving his brain to research but they weren't interested. We both would have been keen to help in research but it seems not much is being done here.
Thank you for your decision. Let's hope in time they will be able to find a cure or even a treatment for this horrible disease.
Even though it's been 19th months things don't seem to be getting any better for me.
They say that time heels all, but I think that's garbage. So far I'm still finding it hard.
That sounds so very fast from diagnosis to demise - I feel for you - you hardly had time to get your head around the one before the other!
Do take care and be kind to yourself - grief is a whole new challenge - we each have to carve out our own journey so no “ right way to grieve”. Many people have bereavement counselling - this may be worth thinking about??
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