We did a brain donation to Brain Support Network in order to further research and also to receive exact diagnosis of Sandy's condition. After three months, I received a letter from Mayo Clinic in Florida. Sandy's condition was Corticobasal Degeneration, not PSP. The neurologist had kind of gone back and forth between the two, eventually diagnosing him with PSP with CBD overlay. I am not surprised because one side was affected much more than the other. This was combined with a verification of MS, and mild case of hydrocephalus (he had surgery for this with a shunt implanted in his brain a couple of years ago). If that weren't enough, he had some indication of Alzheimer's, although it said it was more "age related" and wouldn't have been enough for a AD diagnosis. Sandy didn't have dementia although he had lost some cognition along the way.
I am glad that we made the decision to do the donation. It gives more clarity, validates the fact that we went through a really hard thing together (we weren't just being wimpy). Today I am organizing my files so I can eventually do my 2019 tax return. Just for fun, I'll give you a photo of the "pile" of medical receipts for 2019. I guess 2020 tax return won't be nearly as complicated.
Thinking of writing a booklet on the positives of having this disease. I can start with "less medical paperwork." Hope this doesn't offend anyone. Just having a little dark humor this morning.
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journeyofjoy
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Yes, tough time and now in a new phase of the journey. Who would have thought one could go from one surreal difficult time right into another. This is life. You, friend, are still on your journey with Liz. How is she doing? Are you able to see her at all?
No, the home is on lock down. Missing her, but I know she is well cared for and in good hands.
It is a bit surreal.
Maybe us humans can use this hiatus to reflect on how everything on this beautiful planet, including ourselves, is so interconnected and that we can no longer overpopulate and then ravish the resources to meet our perceived needs. Big cars for example.
It's good that you are sending her cards. They will mean a lot to her and anticipating the mail will help her get through the days. You're a good and loving husband.
Will self isolation be long enough to get through all those receipts !!!
Thank you for 1) donating to the brain research & 2) sharing the results. I am sure many sufferers have a "blurring" between the conditions, not many things are black or white are they. Take care
I have so many projects and things to catch up on that I'm not sure the isolation will be long enough to finish them. At least I'm not bored (yet) and for some reason, my mood is still upbeat and I have peace. Wishing that for all of you as well.
Thanks for sharing the results. That is one huge pile of receipts to get through, good luck.
It's so lovely to keep in touch with 'our family' here, they know what we have been through and are such a good support still. Also helping and supporting others who are still on this journey.
Just realised, mentally we are all going to get through this horrible crisis, the world has found itself. Woke up, feeling bright and breezy, then the dark cloud descended on me and came to the conclusion this is exactly how I have been feeling for however long my/our journey was. It's called grief, something we all know about in spades. At least with this one, we know life will get better eventually! So chin up everyone, it may not feel like it, but in this case, we do have the advantage over others.
Unfortunately Yes! There are people outside that haven't had a moment's grief in their lives. (Lucky Devils!!!) We know everything there is know about it, that's got help us, surely? You were looking for a positive spin, I'm grapping at straws here.
I completely agree. If I hadn't gone through the journey with my husband, I know I'd be in a completely tizzy over this Coronavirus. I seem to be taking it in stride. I guess we get toughened up. Another positive for the booklet.
For me, this isolation is a gift. I can't think of anything I'd rather be doing now than staying home. It will end soon enough.
Thank you for sharing Sandy’s results. You have inspired me (once again) to start the paperwork for brain donation for when the time comes. I’m finding it so difficult to start. I’d rather add up medical receipts, both are daunting.
Hello, I just wanted to put my little bit in, as Ian has wanted his brain to be looked into, not only for clarity but there’s some thought that your children may get it in later life, our district nurse completed a Respect form, which clearly states his wishes for the future having spoken to PSPA there is currently no organisation taking donations in the U.K.
On another worrying note I have just heard on Victoria Derbyshire that a lady whose mother is in a care home, and due to a lack of ventilators at the home she would not qualify for one and to that end have put DNR on her file, how is that possible I thought it was only her family who can make the decision 🤨
I recommend getting this process started. Sandy and I had talked about it several months before and he readily said "yes." Once he started the final decline, which came much sooner than anyone expected, I had to rush to get things set up to do the donation. If you want to do it, try to start the process now.
Are you familiar with Brain Support Network? You can look them up and find the instructions there. Robin Riddle is the person who started this organization so she can direct you. Let me know if you have questions.
Thank you for encouraging me. I pulled out a flyer that the neuro doctor gave us, it’s the same group that you mentioned. Then I went to the office here at home to get started. I’m easily sidetracked, can’t focus. I will try again tomorrow. Hubby agreed to this more than two years ago but I am struggling with letting go. I know that I need to get on this ASAP! He’s starting to decline (again) sigh... I had no idea how hard this would be, I mean mentally. I need to pull myself together!
I chose the one that was willing to handle brain donation because that was important to my husband and me. Hope this helps if you're considering brain donation. That along with gathering all of the info needed for the brain donation were two of the things I found hard to make myself do so I get it! I will keep you in my thoughts as you go through this.
Sidetracked:? Hard to focus? Common symptoms for us caregivers.
It's good that your hubby agreed to this so you have peace of mind, knowing what he wants. There's no need to bring it up to him again. You do not need his approval when you move forward with the process. Once Sandy said he wanted to do it, I never mentioned it again.
You will pull yourself together, again and again. This is what we do. Please don't stress over this. If you want to do it and you would like my help, I will virtually hold your hand all the way through. I wish I could hold your hand in person but the miles (and CVirus) prevent that. Maybe someday I will hold your hand in person.
As far as a funeral home, these things are hard to deal with emotionally of course. First you have to decide what you and your husband want (burial or cremation). We chose cremation and used "Neptune Society." A few months before, we had discussed this and even met with a funeral home guy. Everything was ready to go and then I got so overwhelmed that I just cancelled it. Well, months later things started progressing quickly and I finalized the arrangements we had previously decided on. I was just going through papers yesterday and realized that his arrangements were made just four days before Sandy left us. I can't imagine the added stress of having my husband pass and then having to start making calls for arrangements. As it was, Hospice made the phone call and everything went smoothly. The brain study people have to coordinate with the funeral home people. Arrangements have to be made and coordinated beforehand because brain donation is time sensitive. There is limited (but enough) time to make this happen.
Please know you can ask any and all questions and I am happy to help. I care about you and what you have to deal with.
Thank you for virtually holding my hand and for such a thoughtful response!
Our wishes are very similar to what you decided to do. Neptune Society sounds familiar and I will start with them.
I certainly need to get this in order because you’re so right, I do not want to go through the added stress of dealing with this once he’s stopped fighting this disease. I can’t imagine it either because of how difficult it is now, wow!
I just can’t thank you enough for helping me through this as I’m sure that I’ll have more questions 🥴
I hope that someday we can meet in person. That would be awesome!
Good luck with your paperwork and we’ll soldier on together.
Thank you for the update. We've compared notes in the past because your Sandy's disease progression was so closely parallel to my Ed's. I recognized more of the symptoms you described than I did most others including one side being more affected than the other. I recognize the folder of medical receipts too. Those mostly went away after we entered hospice. Another reason for hospice, I guess (more dark humor)!
I wouldn't have believed it then if I had been told they had a different disease. I was so wrong! Ed's autopsy clearly showed that he had PSP along with 10 other similar less important diagnoses like Sandy's. It also confirmed that Ed had no dementia even though with the loss of communication it was hard to tell sometimes. I always felt like he was 'there' even at the end. I'm so glad that Ed chose brain donation because I feel that it is so important to some day finding a cure. It certainly shows how hard it must be for the doctors to diagnose these diseases. In Ed's case, they got it right and they never deviated from his PSP diagnosis.
I'm actually so surprised by your news that I'm thinking of sending a note to Dr Dickson at the Mayo Clinic telling him about the similarities they exhibited. I think it may be useful for their research.
It's a good idea to share this information with your doctor. I think any information they can collect is a good thing. If you don't mind sharing, what were the other diagnoses for Ed? Robin Riddle had said with over 700 brain studies, she had never seen hydrocephalus. I guess Sandy was just very special.
I should clarify that the pile of paperwork is not receipts that we had to pay for. It's all the bills, explanation of benefits, etc. Medicare (which is available to US citizens after age 65) covered everything for this disease. I still have to sort through all this stuff but at least didn't have to pay all these bills.
I will add the benefits of Hospice to the booklet on the "benefits" of PSP/CBD. ha
You asked about Ed's brain autopsy. I think I said there were 10 diagnoses in addition to PSP, but there were 10 including PSP which was listed first. He had severe cerebrovascular disease (arteriosclerosis and atherosclerosis) and had apparently had several strokes. He also had argyrophilic grain disease which is present in 20% of people with PSP. He had aging related tau astrogliopathy and alzheimer type neurofibrillary tangles. He also had Lewy Body Disease mostly in the brainstem, but without Lewy Body Dementia. There were four more diagnoses which Robin Riddle explained to me, but I don't remember what she told me now. All of this was in addition to the Congestive Heart Failure and benign prostate disease. All of these were diagnosed within one month in 2015. It was a bad summer!
When I mentioned writing a letter to Dr Dickson, he is the Dr who did the brain autopsy at the Mayo Clinic Neuropathology Laboratory in Jacksonville. I never got the impression our PCP or MDS were interested, sad to say. I'm not sure if I'll do it or not, I'm not sure if they could make the connection between Ed and Sandy, but it seems like it might be helpful to compare two brains, one with PSP and one with CBD, that followed a very similar path with their symptoms. I do have Ed's case no., do you have Sandy's? Maybe they'll be able to see differences on their MRI's or something. Maybe I'll call and ask them before I go to the trouble of writing. I will keep you posted if I actually do anything. I agree that I'm glad I did it because it does provide clarity.
I'm home isolating now (in California) so I have a lot of time on my hands..I had just in the last few months gotten back to where I had a little social life again. It seems like it's always something! I'm glad to hear that you are doing as well as can be expected.
I'm sorry it has taken me a while to get back to you regarding the findings on my husband's brain autopsy. I think I was off by one diagnosis. There were ten in all. PSP was first. He also had argyrophilic grain disease which it said is present in about 20% of PSP patients. He had alzheimer type neurofibrillary tangles and lewy body disease, but none of the signs of dementia. He had apparently had some small strokes and arteriosclerotic and atherosclerotic vascular disease. There were four more less important diagnoses and I don't recall what they meant. Robin explained them to me at the time, but I've forgotten. All this was in addition to his congestive heart failure and prostate issues. PSP was given as the cause of death.
As far as letting our PCP know or the MDS know, I've never gotten the feeling that they cared. Dr Dickson who I referred to is the doctor who did the brain autopsy at the Mayo Neuropatjology Lab in Jacksonville. It seems like it could be important for their research if they have two brains; one with CBD and the other with PSP who followed virtually the same path in their illness. I remember when we were comparing notes, feeling like your husband was 6 to 8 months behind my husband in symptoms and I think their deaths were about that far apart if I recall. My husband died 5/17/19,
I don't know if I will actually write to them. I'm still just toying with the idea. Maybe I'll call to see if they even care and if they have a way of making a connection. I have their case no. for Ed's, but none of Sandy's info which may be a problem. If I learn any more, I will keep you posted.
I started a response to you and then lost it. I don't know where those things end up. Thank you for this information. How much of this did you know prior to your husband's death? It's so extensive, both with your husband and mine, that it makes you wonder if we all have some type of brain disease by a certain age, and just aren't aware of it.
Our report said that Sandy's tau pathology was mild. I'm wondering what was causing the severe symptoms then. It's quite an involved report to read so I think I will contact Robin Riddle to have more of an explanation. I'm also going to call Sandy's neurologist. The social worker said that he usually discusses these findings with the family.
One puzzling thing that stands out is that Sandy had countless falls over backwards, which is a symptom of PSP. I don't think that's a common symptom of CBD.
Dr. Dickson at Mayo Clinic in Jacksonville is also the doctor that analyzed our study. Number NA20-015 if that helps.
Maybe we can find out more info. Where are you located?
Thanks for the case no. Ed's was NA19-191. With the two case numbers, it will make it easy for Mayo to compare them. The autopsy reports are hard to read, but interesting. Other than having the PSP diagnosis, the rest of the findings were a surprise. We never noticed any stroke symptoms, but the hardening of the arteries was described as severe so the strokes aren't surprising. When the MDS said he suspected PSP, but wanted to try a higher dose of Sinemet before he was sure, I came home and read everything I could find about PSP. By the time we went back to see him, I was convinced that he had PSP which the MDS confirmed then. I think all of us by the time we reach a certain age have some abnormal brain pathology. I know they called Ed's Alzheimer's age-related.
I live in Turlock, California now which is in Central California. I moved here to be closer to Ed after I had to move him to a care home in Modesto. We lived here before moving to the Gold Country where we lived for about 24 years. I loved it there, but it's not a good place to be sick because of the lack of services.
I will keep you posted as to what I find out from Mayo.
Hi. I love the dark humour. Only way to deal with things at time. Good luck with the tax returns. I am so glad that you have had the results of Sandy's brain donation back and that it clarified it for you. No one could possibly have classified either of you as 'wimpy'. I know that Nigel's results did not validate CBD but I am so glad that they can use his results as a comparison with sufferers like Sandy as he had such similar symptons and research will learn from that. Hope you are coping with the distancing. Love AliBee xx
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