Brain studies: Hello Friends, I haven't been... - PSP Association

PSP Association
6,925 members9,453 posts

Brain studies

journeyofjoy
journeyofjoy

Hello Friends,

I haven't been on the site much for a couple of months. Even with this Covid business, I've been busy taking care of things. There is a lot to deal with after losing your husband.

This is a sensitive topic but I want to share about my husband's brain donation. I wrote about this before but want to add information from his neurologist. My husband made the decision to donate his brain and we used Brain Support Network, here in the U.S. This enabled our family to get an accurate diagnosis and it turns out he had CBD, not PSP. The diseases are so similar that it's so hard to differentiate. Also, this donation will further research.

I had a discussion with the pathologist as well as my husband's neurologist. The neurologist wants to raise awareness around brain donation. This is the only way they can make any discoveries about these diseases. Currently 2 out of 100 people do these donations so unless this greatly increases, we're going to be in the dark on this for a very long time.

I realize this is a delicate subject and that all the caregivers are going through a very difficult season. Let me know if you want more information on this.

All the best to all of you.

Joy

45 Replies
oldestnewest

Thank you for your post Joy. I personally regret not having offered my wife's brain for donation. I must admit I chickened out over making the decision.

My wife had CBD and having read all I can about the disease I am confident that her diagnosis had been correct.

Wishing you peace as you go through this time of grief.

Ken.

journeyofjoy
journeyofjoy
in reply to kenh1

Dear Ken,

I hope you let you go of your regrets. I've been shaking mine off a little at a time. We all wish we were perfect. We have so many decisions to make in this journey and we make them one at a time - sometimes several each day. You did a wonderful job taking care of your wife. And there are no chickens among us.

Wishing you peace as well.

Joy

Hi Joy,

I just sent you a private message asking for more detail, but others may also be interested in what you’re comfortable in sharing.

We’ve made the decision to donate but I’m stumped at just the first few steps. I can’t seem to jump over the first couple of hurdles.

How did you get started? What was the most difficult part? Were you required to pay upfront? Feel free to reply to my private message.

Thank you for this post and I’m so sorry for your loss.

❤️ SewBears

Larry specifically asked that he not be autopsied. No idea why as he was signed up as an organ donor. He asked for so little. I honored his wishes.

Cinnylou
Cinnylou
in reply to Jeff166

My husband looked absolutely horrified when I broached the subject of brain donation with him. So I promised I would not donate. After he passed, I oh so briefly considered it, but a promise is a promise. And I’m sure the wheels for donation would have already needed to be in motion by that time anyway.

SewBears - so nice to hear from you. I will look for your message.

Jeff,

You did the right thing. I would have honored Sandy's wishes also. Our loved ones don't have much control over anything so we give them what we can.

Dear Joy

It is good to read your post .

Donation is such a personal decision but one I believe is worth thinking about just like organ donation or writing a will.

My husband donated his brain and I found it a really ‘positive’ experience - with no regrets at all indeed everything was handled very sensitively .

The primary diagnosis for my husband remained PSP but with the additional finding of Lewy Bodies. It has been really helpful for me in understanding and accepting that the challenges we faced were ‘real’.

It is good to hear you too have found comfort from the donation. I am proud to know that my wonderful husband will help with research into these horrible diseases .

Love Tippy

Tippy,

I agree. Somehow having these answers helps us to sort through everything. And the research is necessary if we're ever going to find answers. Did you use Brain Support Network? I don't recall where you are located.

Joy

Dear Joy

I am in the UK we used the Queen square (UCLH) service .

I have not heard of any negative experiences so hopefully they all have the same high standard.

Look after yourself

Love Tippy

Glad you had a good experience. You might want to post their information so the UK people have the information. Good to get the word out. I think a lot of people would like to participate in this but in the middle of caregiving, it's hard to take on any new tasks. They may need a prompting and specific instructions on how to go about it.

Such hard things we never thought we'd have to face. Look after yourself too.

Love, Joy

My husband is enrolled, and I carry the necessary paperwork when we travel........he won’t benefit from this, but perhaps others will. That is important to both of us.

I'm glad you have everything arranged ahead of time. And I'm sure it's comforting to you that this is important to both of you. Blessings on your journey.

I arranged for Steve’s brain to be donated here in the U.K. Our consultant helped to sort it out as things have to be done very quickly and because Steve died on Boxing Day things weren’t open. I am so glad we did it as Steve wanted to help others in any way he could he was a blood and platelet donor from 18 years old right up to a couple of years before he died. I think one thing that worries relatives is that it will leave their loved ones looking different. I went to see Steve at the funeral home and he looked amazing you would not know that the donation had been made at all. The only thing that I need to follow up now is that I haven’t heard anything back from the brain bank. Thank you for your post as I shall make contact with them to find out what showed up with Steve’s Brain, I had a lovely letter thanking me but haven’t had any further information. It’s every family’s personal choice but I felt at least something good was being done after all the pain and heartache, Steve was also regularly filmed and photographed in hospital for medical training on PSP.

Love to you all

Love Sarahxxx

AliBee1
AliBee1
in reply to Hiking13

Dear Sarah.

It took 9 months for me to get Nigel's results from the UCL Brain Bank London although I had been told 6. I must admit that I phoned to see how things were progressing. I was very concerned that I would just get a letter but one gets a phone call first followed by a letter which was much better. I arranged it after being sent the information from the PSPA association and then carried his brain donor card with me all the time as they said that they need to move quickly. I found it the other day and it is still sitting on the side in my bedroom. I don't know where to put it and it was so much part of him that it sort of brings comfort. He was a biochemist and led the team that designed the diagnostic sticks for the very first glucometre for those with Diabetes. I have no doubt that if he had been well now he would have somehow or other got involved with the COVID 19 testing kits !! I probably would not have seen him at all.

I agree totally with you that Nigel looked no different at all and only had slight bruising at the back of his neck but considering the bruises he acquired when alive, when he was falling frequently to begin with and still later on, it was nothing.

I hope that you are coping ok.

Love Ali Bee

Hiking13
Hiking13
in reply to AliBee1

Hi I am doing ok, just keeping as busy as possible. I was doing a lot of travel until this thing stopped all of that! It’s 17 months now since Steve died so I think I need to follow up regarding his brain donation, we weren’t as organised as you so it was all arranged very quickly once Steve had died so I am wondering if maybe I didn’t tick the right box or something but I had a letter from his consultant a while back regarding some research that we had participated in regarding PSP being passed through genes as Steve’s mum who died many years ago at a young age also supposedly had Parkinson’s but I wonder if it was PSP too and also he has a brother who nobody has contact with who also supposedly has Parkinson’s it just all seems too much of a coincidence so our consultant was looking in to it. I feel I need to find out what showed up in Steve’s brain just to complete the ‘story’. I hope you are doing ok in these strange times

Love Sarahxxx

AliBee1
AliBee1
in reply to Hiking13

Good luck. I am FINE as Heady would say xx

Sarah,

It was over three months before I heard back. I wasn't really thinking much about it and then received a letter and report in the mail. Do check into it.

Take care. Joy

Thank you so much for your post. It is a wonderful gift that your husband has contributed to treating future patients. It is very inspirational and humbling as it is a completely altruistic choice in my opinion. So thank you.

May I ask (to anyone reading) does CBD show the typical hummingbird sign in the brain like PSP does? My late husband's last neuro doctor pointed out that classic sign in his brain about a year and half before his passing. Thanks

kenh1
kenh1
in reply to Jkhakh2

I have only read about the hummingbird sign on this site and only linked to PSP

I've never heard of it being linked to CBD

According to my husband's neurologist, the hummingbird sign doesn't always show up in PSP patients.

Tried to private message you, but it wouldn’t go through. I’d like the information that you have to share.

So sorry for your loss.

journeyofjoy
journeyofjoy
in reply to Aurala

See the recent post from "rriddle." Robin Riddle is the director of Brain Support Network in CA. They can handle all of the brain donations for the U.S. I am going to post more on this shortly.

They are very helpful in walking you through step by step.

Hi Joy,

So good to hear from you. Yes, I agree that brain donation is so important. Such a wonderful gift. To be counted. To validate the numbers that this horrible disease affects for those precious research dollars.

John has also agreed to donate his brain to Northwestern University in Chicago. I thought we had everything set up e.g. Hospice, funeral home & etc. Then the pandemic hit. I was notified last month that they have suspended the donation/procurement team until further notice due to Covid-19. Sad news, but I guess not totally unexpected.

Take care of you. Thank you for bringing up such an important topic.

Hugs, Alice

Dear Alice,

I had a feeling that I might run into issues donating now that COVID-19 has been so devastating. I will still try to line everything up and hope for the best. Probably wishful thinking on my part but I’m hoping for more time with hubby and maybe the virus will settle down so that we can still proceed.

❤️SewBears

Dear Alice,

Brain Support Network can handle all the donations for the entire U.S. They are operating now. Covid has not stopped their work. Also, it's necessary to donate to an organization that specializes in these particular diseases or it won't further the research we need. This is my understanding.

They are very helpful and can walk you through step by step. I am going to send another post to the group shortly on this.

Hugs, Joy

Thanks Joy! Excellent news!! Northwestern does have a designated PSP research department. Have no idea why they're closed other than IL also got hit pretty hard with Covid-19. John and I are in WI.

I will watch for your new post.

Hugs, Alice

Alice, I just posted a minute ago. Mostly the same information I already gave you. BSN can help you. Let me know if you have more questions.

Hugs, Joy

I My husband has CBD and he wants to donate his brain but we don’t know what steps to take .

We would appreciate more information.

AliBee1
AliBee1
in reply to Michigan341

Are you in the USA or elsewhere? If in the UK see my reply to Hiking13 above. Love Ali Bee

Michigan341
Michigan341
in reply to AliBee1

We are in the USA.

Send me a message, and I will give you the contact info if DR Litvan’s clinic coordinator at the UCSD movement disorder center. She helped me enroll my husband at Mayo Clinic.

AliBee1
AliBee1
in reply to Michigan341

Glad that you have been offered USA advice xx

Dear Michigan,

We used Brain Support Network. They can handle all U.S. cases. They were so helpful and walked us through each step. You must use an organization that specializes in these particular diseases or it won't help research. They are continuing to operate during Covid. Let me know if you have further questions.

Joy

We donated my fathers brain and are waiting on results. The Brain Support Network was so helpful. The website lists funeral homes that allow the donation on site and all of the steps needed to make the donation to the Mayo Clinic.

brainsupportnetwork.org

Already signed up as I also help with the research . In the Uk the brain bank at Cambridge would be pleased to hear from you.

Thank you, Journey. My husband has agreed to donate his brain after his death, and the Mayo Clinic Brain Bank in Jacksonville, Florida has been very helpful to us as we make end-of-life plans. We both believe that this is a good decision, although as someone else observed, Covid 19 has been a problem. Of the three pathologists recommended by Mayo, only one is currently still handling brain donations and he is two hours away by car, so I feel some pressure to be prepared and move quickly when my husband leaves us, as we have been told by Mayo that the window of opportunity is about 24 hours. He is suffering so much currently; his gesture of intended donation is one that I admire a great deal. Whatever helps research in neurodegenerative conditions is worth doing, I think, and as much as I dread the sequence of events when the time comes, I also believe it is important.

Marilyn

Good luck Marilyn. The more preparations you can make before hand jointly the better it is despite it being horrid. All I knew was that towards the end I was doing what he wanted and that helped. My loving thoughts are with you both

Ali Bee xx

Dear Marilyn,

Mayo Clinic in Jacksonville is who ultimately did the brain study, however, we went through Brain Support Network . They handled all the steps for us. Yes, it is time sensitive and you have to be prepared to move quickly. Anything you can do ahead of time will benefit you. I encourage you to contact Robin Riddle at BSN. She's a great help and she'll know how to make this work.

I'm so sorry for the suffering you and your husband are having to go through.

Joy

Dear Joy

I am so glad that you found solace in this and that you finally received a diagnosis. You may remember that Nigel was diagnosed with CBD but the brain bioposy showed that it was not, but the parts of his brain that died gave the same symptoms so that the brain donation people say that it was useful to learn from his brain even though it was not CBD. I agree that it needs to be advertised more but so many are scared to talk about it. I am glad that we did.

I hope that you are coping ok. It is a year ago next Saturday that Nigel died. So much has happened since then it is almost unbelievable.

Big hug. AliBee xx

Dear AliBee,

A year already? It's over five months since Sandy passed and I can't believe how time has gone. I know it'll be a year before I can blink. Yes, so much has happened since then, for all of us. I'm coping okay. Seems to be getting harder now. We will keep on keeping on.

Joy

Joy,

Thank you for posting about your experience with Sandy's brain donation. It is wonderful you are an advocate for brain donation.

Brain Support Network (brainsupportnetwork.org) has helped over 800 families in the US with brain donation. We are still operating despite covid-19. In fact, we have handled several covid-positive brain donations. We help with three or four brain donations per week.

Not all pathology resources are operating at this time. No pathology resources at university medical centers or hospitals are helping with the brain recoveries.

And not many brain banks are operating either. Lots of brain banks (including Harvard, UCSF, and University of Miami) are referring families to Brain Support Network.

We work closely with the Mayo Clinic. In fact most of the pathology resources Mayo refers people to have been found by us. We have strict guidelines for the people we work with, and we monitor their behavior with families and funeral homes. (There are several people we no longer work with due to lack of professionalism.)

As GirlinAZ mentioned, we can offer suggestions of funeral homes or cremation organizations to families who live in major cities where we've done many brain donations.

We've outlined the process for brain donation here:

brainsupportnetwork.org/pro...

Thanks again for your advocacy. We agree with you that brain donation is essential for answers are to be found to these neurodegenerative diseases.

Robin

Everyone,

Read some brain donation case studies here:

brainsupportnetwork.org/bra...

You might see some people you know!

Robin

Joy,

The information you are sharing is incredibly important, thank you! Kurt did have that characteristic humming bird pattern in his MRI when diagnosed with PSP. He did not opt to donate his brain specifically, however offered his body to our local university hospital for future study in their anatomy lab by medical students, PA's and dentistry students. In December, the students from the current class had one of the most heartfelt, special memorial services I have ever attended, to thank the donors and their families for the wonderful teaching gift they had given them. I would encourage you to have that discussion with your loved one whether for brain research or general teaching at a medical school. Everyone of those students shared that the donor was the most highly valued and respected teacher they had.

We had a wonderful celebration of life gathering last summer, but this does extend the time for final closure. They told us return of remains could be up to 3 years. Our family will have a private final goodbye whenever that happens. Warm thoughts and hugs to each of you. 💞

You may also like...