Grateful to see this PSP Association

[SunnyBoy777]

My wife, Lu, was diagnosed with CorticoBasal Ganglionic Degeneration (CBGD) on

05/23/2013 and died on 03-22-2019. Cause of death: Dehydration and CBGD. It was a long and painful progression, which ended with her death at home under hospice care. She was an intelligent woman, fluent in English, Mandarin and Thai, who retired after 38 years as a computer programmer for the US Navy civil service. Her mind was sharp and clear but she was trapped in a body that no longer worked. I wish we had known of your association before she died of this rare disease. It was very lonely, so I am happy to see that you are available to help others through their journey. God bless you all.

[honjen43]

Welcome Sunny! Am so sorry for your loss. She sounds like an amazing person and partner!It's a lifelong search, isn't it?

Finding this site while my hubby was alive was a godsend, too. And am still here, because I made so many online friends..

Once you have been through the experience of caring for these rare and unknown disease with a partner or family member, you have so much knowledge and understanding that no doctor or specialist has, and it is cathartic to be able to pass on that personal touch to others who you know are struggling as much as you did!

Personally, I had no confirmation of what my hubby had, just that CBD seemed to tick all the boxes, and that no-one knew how to deal with or what to expect.

I documented our journey to help others here because I found so much care and compassion here. Numbers for CBD have grown since, as has the wealth of information, both from contributors and from HU.

Hugs

Jen xxx

[SunnyBoy777 in reply to honjen43]

Thank you. I just added a picture of us from her retirement party.

[honjen43 in reply to SunnyBoy777]

She is beautiful! Big hug

Jen xxx

[LuisRodicioRodicio]

Thank you. A big hug.Luis

[Mariawatters]

So sorry for your loss . I was diagnosed with cbd 5 years ago now and only found this site in February. I had a very lonely 5 years . Even tho your lovely wife has gone you will still get comfort from the fab people on here as they know what you have been through. Thoughts and prayers for you x

[SunnyBoy777 in reply to Mariawatters]

Thank you. I just added a picture of us from her retirement party.

[Mariawatters in reply to SunnyBoy777]

She is a beauty xx

[daddyt]

So very sorry to hear about your loss. You are here with great and compassionate people on the site. A big hug to you.

Tim

[Beads0122]

Sunny,I’m sorry that you found this forum after your wife passed. I was only aware of this site about 7 months before my wife passed away (one year before your wife). Those final months are the hardest. My friends here, that I have never met in person, are kind, supportive, and loving because they really know the intimate details of this cruel disease and the mental and physical toll it takes on caregivers.

Even though your wife has passed, I think it is helpful to stay connected to this site. Often I will see a post on my feed from it that catches my eye (like yours) and I reply. I think it is good for us to know we are not alone in this very rare disease that most of us had never heard of it before we are faced with it. I think your wisdom will help others, and in doing so, will help you.

Thanks for sharing your photo. I always enjoy seeing memories of good times.

Wishing you strength and comfort as you continue to deal with the toll of this disease on you.

Bobby

[Tippyleaf]

What a lovely photo, sorry you did not discover this site beforehand. During my husbands PSP journey -similar time frame to Lu’s I gained huge support and comfort.

Love Tippy