Learning from Loss

[AllieBBird]

My husband, 55 years old, was just diagnosed with corticobasal syndrome this spring. He was a hospice chaplain and writer before he began to decline. He has progressed very fast, and has lost skills almost weekly over the past several months. Below is a link to his first blog post about the diagnosis. He is brutal but honest about how he sees this and it reminds me how much there is to learn from this journey which can seem so oppressive. (He also had his first fall last night, so mortality is front and center on my mind today.)

elephantjournal.com/2019/05...

[Hidden]

Welcome to the site. Everyone on here will be here to support you and your husband through this unwanted process. People here are at various stages with these diseases. A number are widows or widowers who form bonds and stick around to add their two cents of very useful knowledge. Ask any question. Someone somewhere in the world will probably have an idea or suggestion.

[enjoysalud]

Hi, I am so sorry. I read his words.

I lost my son to PSP. His first symptoms were at barely 52 years of age, and he died at barely 55 years of age....two years ago.

My prayers and good wishes to you. This site will give you good support and advise.

Los Angeles, CA, USA

[Dadshelper]

Welcome to the site. Dad was Dx with CBD in Jan 2016, after a year and half trying to find a Dx that fit his symptoms. Feel free to ask any questions, read back posts, rant when things are frustrating. Since yiur husband was involved in hospice you already know the importance to having end of life matters sorted.

Ron

[Tippyleaf]

Welcome -as others have said this is the site to come for information, advice and support . We are all or have been on this journey and picked up experience along the way.

Don’t forget to take care of yourself too

Love Tippy xxx

[raincitygirl]

Hi Alliebird,

Thank you for sharing your husband's blog post. It is brave of you, and him, to share such profound reflection. Other people can hardly understand what he is going through - yet he's willing to communicate (and teach) while he still has that gift. My husband died of CBD. He lost his communication years before he died and that was far more heartbreaking for him than the physical losses. May your husband retain his gift for as long as possible.

Amne G.

[AllieBBird in reply to raincitygirl]

I think that is his biggest fear. He is doing pretty well right now, but we know it won’t last. This is so hard to share with others who’ve never heard of it - I never thought I would be jealous of the clarity that comes with “my spouse has cancer.” We have two young daughters and so much to sort out. Thank you for replying.

[honjen43]

Have read your husband's words too. He describes the turmoil I imagine is inside everyone who has these awful diseases! Thank you for posting the link.

Don't give in!! There are a number of inspirational people living with CBD/PSP on this site who show how life can still be lived to the fullest extent possible. Tim and Pat may well make contact, or you may have already found their posts. They are testament to what can be done with a will and determination! Keep up the music for as long as you can!

My husband was always unemotional, apart from shouting from anger or frustration all through his life. So many of his subsequent symptoms were so similar to his normal behaviour, that it was difficult to know when it all changed.

It is important to do as much as you can together while you can, however little or however hard it is to manage! We had a year of trips around South Island, New Zealand, and then to the UK. Each trip had its difficulties, but we did it.

Later, eating became the most enjoyed! Didn't have to be a big outing; ice cream, jelly, soup, chocolate at bedtime, licorice all sorts, a good favorite meal and a glass of wine. Just simple pleasures that would bring a smile to his face. Keep the 'quality' up at maximum!

Hugs

Jen xxx

[Northstar1]

Hello my husband was dx in April 18 with CBD at age 54. He is aware of the diagnosis and name CBD...but is not aware of the prognosis. He has never been interested in computers or the internet so does not search. He does not want to ask the Consultant any questions. I e mail the Consultant prior to an appt.

I support him as best I can.

It's horrendous, why us. Sometimes I think I have symptoms.....

Medical support seems lacking I felt cast adrift. I thought if this was cancer things would be very different.

[AllieBBird in reply to Northstar1]

That sounds so hard. And lonely for you. I’m sorry. It is strange that we are in somewhat similar circumstances. My husband is 55, diagnosed at the end of April and while he definitely knows what’s going to happen he is oddly detached. I guess that is how he is coping. I hope your medical team is able to help you and make it so you are less alone - it seems like you are in a very, very tough spot that is only going to get harder as his disease progresses. Hugs!

[Northstar1]

Yes thanks it's helpful knowing people on this site. We can keep in touch xxx

[Joandbear]

I read your husbands post and it moved me. I was married to an author also, but sadly he never wrote down his experience of CBD . This post gave me a small possible window of what he went through. My husband transitioned sept 30 2015. I still miss him every day. Thank you