Haven't written in weeks but feel the need to share with you. I received the final puzzle piece so much earlier than I was told. It was suggested that brain donation autopsy results take up to 6 mos but I just received them at 3 1/2 mos.
I can't tell you how shocked and rather disappointed I am! My precious husband did not have CBD, but rather Lewy body dementia with late stage Alzheimer's! I spoke with the pathologist as well as the dr we have dealt with at the Hospital of the University of Pennsylvania. I asked how 3 neurologists specializing in these diseases could have been wrong. He said they weren't really wrong, that Michael did not have signs and symptoms of those diseases but moreso CBD. Even the gross pathology report was CBD but not the microscopic. Now I understand why they can't really definitively diagnose without autopsy.
I guess I am disappointed because these diagnoses are more common and I could more easily accept a very rare diagnosis. My first question was one of his course of treatment. I was assured that had they known the diagnosis, he would have gotten no other therapy other than possibly trying some Parkinson's drugs which probably would not be effective since he had no classical symptoms. Also I was told the outcome would not have been different. I am so thankful for that. I know what I would have done with the guilt had it not been so. Still in shock.
It's 14 weeks today since Michael passed and the emptiness seems to get worse. I went to a bereavement breakfast for the 1st time today and felt very uncomfortable. I was so much younger than anyone else and felt out of place yet the young widow/widower group is too young for me. The organizer suggested I try a new mtg next week. I will give it a chance. I know my isolating is not good for me so I will make myself go.
You all tell me it gets better so I'm plugging on but all I really want to do is sleep. Now that the puzzle is complete, I have nothing to anticipate, like no purpose. I guess I feel like he doesn't need me anymore even though I know he hasn't for 14 wks.
Does this mean I can't talk to you anymore? I no longer qualify with PSP or CBD. Feel so lost and alone.
Thanks to you all for all your support.
Big Hugs,
Liz
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Wow, thanks for sharing, that is truly helpful. (And of course you are still welcomed here -- we have much to learn from you and I know you've probably benefited from the support of other's here -- as I have).
Though I can see the shock of not having the expected DX, I think in the end it doesn't much affect the journey you've gone on, especially as you now focus on going forward -- but that's just my opinion.
I wish I could offer more helpful words to you at this time -- but just know I found your post very helpful and thank you for the notification.
Hey, of course we are still here for you. The results do not change anything you went through. The caring was just the same, obviously the symptoms were the same. Unfortunately so was the end result.
Do keep trying with these various groups. I know what you mean though, about being too young for some. I think one group I tried, I must have been 20 years younger than anyone else! The main problem is nothing is going to help at the moment, one day it will, but you have to be out there for that day to arrive.
Yup Anne. I recently turned 70 and the man I sat closest to was 89. Not that I am having him as my pal, but our lives are very different. He didn't mention losing his wife.
I will keep trying. You're right. I can park information in my brain for later use.
As always, thank you!
Liz
I read somewhere that only 67% of brains donated from people with PSP actually had PSP. Medicine can only go on what they see and hear from patients and family. Medicine is clueless. There really isn’t any test for these diseases.
Grief is hard. It takes a long time to get over the death of someone you loved. It’s natural to feel lost at this point. You are in new territory. Give yourself all the time you need. With time the pain will get less intense but it will be sometime before it isn’t so raw.
Use us as a support group. You may find one in your area that might be better at some point.
The pain and the journey is so similar regardless of the disease so please do not feel you cannot be part of this group. We are here as long as you choose to join us.
First letter from the Neurologist about my husband suggested Dementia of Lewy Body, Parkinson’s plus or Frontal Temp Dementia. He went on 9 months later to be given a diagnosis of PSP based on eye movements. Characteristics of all these diseases overlap and are so difficult to pinpoint due to the variations in the disease presentation. The ghastly journey all of our loved ones go through has many different names.
I hope you ultimately find a bereavement support group that is helpful - keep trying - though it must be exhausting
Oh Liz I can feel your great sadness and loss. It is still early days for you. I tried going to coffee mornings at first. Think I lasted 3 weeks!
If you want to sleep then sleep. It takes ages to get over all we go through. I slept many days away.
I only went away for the first time a couple of weeks ago. It definitely did me good. It has taken over a year and a half to get to this point though. I can still cry at the drop if a hat. At first I couldn't cry but that has changed. I suppose I feel more like me now. You will too Liz.
At least you have an answer about what took your husband. Sadly the hospital were so uninterested in my husbands condition I never donated G's brain although I wanted to. So I assume he died of what they had said he had!
In the end our loved ones all went through much the same thing? Your pain and suffering was no less than anyone elses Liz. Nor was that of your dear husband.
Don't dare leave us! This is a wonderful site with great people. You will get advice and comfort on here. You can let us know when you are down and we will haul you back up!
Such kind words Marie. Thank you so much. You're right..the disease processes are so closely related no one knew. I will stay on this site..only wish I could contribute more to help others, but will do my best.
Hi Liz, Yes! of course we are still here for you! A large group of us now are in various stages of recovering from the grief of losing our loved ones after numerous rare brain diseases. Look up grieving in Search and I am sure you will find a number of responses as we have all progressed through grief.
I agree with Jeff166! There is no cure for any of these brain diseases - yet! - but through our posts, my hope is that they will make it easier and less frightening to care for those affected. No less important are the insightful and courageous posts from those affected by these horrible diseases while they are able.
In the long term, it does not matter what the final diagnosis is, except that it was a rare brain disease - and that you did your utmost to care for Mikey while he was alive! You could not have done more!
And I understand why doctors "practise medicine". It is a profession where it is agreed one never stops learning, and without all the knowledge and tools, doctors still get a diagnosis wrong at times. And they learn from that misdiagnosis, and someone will further research what was missed, if anything, and why.
So, Liz, keep coming back here! We understand where you have been, your confusion at diagnosis, and your loss of direction as you fight your way back to normalcy. Many of us have travelled that road, so we can offer understanding, support and encouragement!
And Age does not matter here!!! Just wisdom and experience!
You will get through this! If all you want to do is sleep, then sleep! It is part of the healing process. Just don't let it take over your life. Don't let time stand still for ever! Baby steps!
If you have the opportunity to get out and do something, then do it! Push yourself within your comfort zone! I joined a bus tour group and made day trips, then longer ones, then was able to branch out on my own. I met some people who have become good friends - and others who I avoid!! Life can seem shallow at times after what we have been through!
You will slowly grow stronger, and picking up the threads of a new life alone will gradually seem more doable!
We are here for you if you need advice - or a shoulder! Take care!
Jen, thank you. You always seem so wise and I always appreciate what you share. And thanks for encouraging me to come back. I need this. Going to read up on grieving!!
Absolutely agree the success of this site is the contribution of participants all at different stages, experiences, relationships to these diseases . The practical and emotional support is invaluable.
Liz your post has made me and others I am sure reflect on our journeys past, present and future thank you for being so brave in sharing
Hi Jen, you are right, life does seem very shallow, this side of PSP. Never really thought of it, in those terms before. That's probably why I do struggle at times, in the various groups I have tried. Thank you for that little insight. I will try to remember that next time I come across it.
Not sure I hold out any hope that any professional person ever reads our posts to find out more about these evil diseases. To their shame, I doubt if they even know it exists! (If anyone is reading, i apologise! Please post, we would all love to help, by passing on any knowledge you require)
Sending big hug and much love
Lots of love
Anne
Hi, You have a responsibility to yourself also to be healthy , be positive and move on.
Hi Liz, I just had to respond to your post as whilst it made me feel so very sad reading about how you are trying to deal with the emptiness that now fills your life, I also found it so interesting. Whilst I cannot dispute that my husband's diagnosis of probable PSP is not correct, I have always maintained that there is something else going on and he could in fact have a lapover of another neurological illness. His symptoms, according to my research, have always shouted Lewybody dementia, and if fact that was the suggestion of one of our GP's before the neurologist's diagnosis, who completely ruled out LewyBody. Like you, I guess we will never know until autopsy and even then, as others have said, any other diagnosis would not have made much difference regarding treatment. For the sufferers and carers this hideous journey would be pretty much the same.
I do hope that you find the strength not to isolate yourself and whilst I am not in your position yet I am in a grieving process of sorts, as I know you will understand, having lost the person I once knew and eventually will have to face the final part of the journey when the grieving starts all over again. I have said to others on this site, that whatever we are going through there is still so much joy to be had from this life we have been given, we just have to look for it and sometimes it's not hard to find as long as we open ourselves up to embrace it. The pain of bereavement stays with us for a long time but allowing some joy in does balance things out, so allow yourself time to grieve and balance it out with happy moments when you can. This site can be awfully depressing at times due to the nature of the posts but equally the people on here are amazing, always ready, despite their own struggles, to give support and advice, so keep posting and let us know how you are doing. Sending you my very best wishes. HilsandR
Thank you so much. I totally agree that this DX changes nothing that we experienced once the shock of the misdiagnosis has passed. I am trying to find happy moments and am aware of how blessed I still am with family, friends and many other things. I am full with gratitude but feel the hole in the center. Thank you all so much.
I doubt that hole will ever go away, Liz, and I am dreading the time when I have to face it. I am pleased that you have good friends and family to support you. I too have been blessed with that and I do consider myself lucky as I know that there must be many who don't have the support. HilsandR
Hi there, I like the others on this site, most definitely don't want you to leave. Leon (hubby) passed 10 weeks ago. Misdiagnosed as lots of others were, first with Parkinsonism, Lewybody, etc etc. Put on meds that made him worse. The outcome although different diagnosis, would still be similar. I certainly feel for you. I found comfort A. from this site, and B. by going into the care facility where Leon spent his last 4 months, and volunteering, as lots of the houseguests, don't get visitors. Just talking to them, dancing with them at Happy Hour and taking them to concerts makes me feel better and useful The hardest thing I have found is the TIME I now have on my hands. Love and hugs to you, xxxoooo
Wow, bless you. And you are only at 10 weeks! I have a hard time just driving by the nursing home when I can't avoid it. Maybe someday I'll volunteer at another home. Would be very rewarding, I'm sure. I haven't gotten to the point of having extra time but I may in the future. Right now, I am overly busy which it's probably a good thing. Thanks for sharing.
I do have to say, that even though my sister didn't die of a rare brain disease (we were working together to help mom with her CBD), her passing (a year and a half ago - now), has left me in a position to walk both sides of this journey at the same time.. all that to say, I've used the advice from this group to help me along the journey of grief re: my sister, and she didn't have a rare brain disease (breast cancer)... so again, Liz, another reason to remain regardless of the dx.
(I do also have to say how odd it is for me to be in the both the pre and post processing of caring for loved ones with terminal diseases - so can relate to all posts here.)
So sorry for your losses. It's difficult to lose more than one loved one. My parents died 5 months apart and it was tough. No one said life is fair. Hang in there.
Please don’t leave us! Your note has spurred me on to contact my wife’s neurologist, who also received her brain for science/autopsy. I was never told that they would specifically feedback information, but I want to know. I believe that her autopsy will be similar to your husbands. They already knew that she had both excessive Tau and Amyloid(Alzheimer’s pathology) proteins, but CBD symptoms. So, not classic CBD.
My hope is that the information and research from our loved ones will increase the understanding of these terrible diseases such that it is treatable and preventable.
I’ve had a number of offers for berievement groups, but not interested. Especially the ones that there are workbooks! I don’t want to study it.
Wow, never heard of one with workbooks! Please no ! Yes, I was anxious to get autopsy results just for closure re: the disease. Our neurologist couldn't be more thankful for the brain donation saying how helpful it will be toward finding, at the very least, a treatment for these diseases. The more people who donated, the faster they would find a treatment and maybe eventually a cure.
I am so sorry that you are struggling; your remark about having lost you sense of purpose touched me. It is true, isn’t it, that we all spend so much time trying to help our loved ones survive one more day or enjoy one more outing that is important to them. It must be a complete reordering of our universe to find that purpose gone. Being patient with ourselves as we recover from the trauma of caregiving and loss is more easily talked about than experienced but please continue to hope for a meaningful future for yourself as you rediscover who you are when your life is not etched in pain. God bless
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