Husband diagnosed with CBD

[Sylviawil]

My 76 year old husband has just been diagnosed with CBD. His symptoms began about a year ago but now that I know what the beginning symptoms really are, he was probably having symptoms much earlier. He is in complete denial and I am ok with that but I am totally frightened as to what the future holds. I know no one can predict how this will progress but this has advanced so quickly over the past year. He can still walk and eat but he tires so easily and needs help with everything. He has also been diagnosed with progressive aphasia so finding words is problematic. He falls asleep constantly. We did not get a diagnosis until we went to Mayo. We now have the diagnosis but now that we are home I don’t know who to turn to. I don’t really have a great deal of confidence in our primary care physician. I hope this site is still working because I haven’t seen any recent entries.

[carehope]

Hi Sylviawil 🤗 Yes, the site is absolutely still going strong ! Lots of support, helpful info, suggestions for interventions that others have found to be effective or not, etc.... as you are probably aware.

You can search for anything in particular by entering key words in the header at the top of the site . You can also see if there are support systems in your geographical area

using Google or another "search engine" . I've been taking care of my sister who has PSP, for approx. 12 years, and luckily found this site quite early. I was also very fortunate to find an excellent and caring neurologist for my sister. The whole "shebang" has been my "job" since my sister became ill. A challenge for sure, but it's been a heck of a learning experience. I hope that wherever you live , you'll be able to find the services and assistance needed. Every state and community is different as far as what is available, but generally as you're aware, we educate ourselves because these diagnoses are not commonly known.

We're located in Eastern Long Island, NY. It seems that finding professionals who're knowledgeable about neuro. illnesses esp. the lesser known ones, can be difficult if not impossible depending on your location ! There are people from all over the world who use this site , plus I'm hopeful that with some research you'll gradually learn and find what you need !

If I can be of any asistance myself please just "holler". I'm positive that this site can be helpful !!

[Sylviawil in reply to carehope]

thank you so much for your reply. You have no idea what a relief it is to communicate with someone about this. Honestly, I believe it is easier knowing what this is as opposed to the “not knowing “ for so long. My husband has good days and bad days but in general is in decline. I live in Alabama and my resources may be limited in this area. One day at a time.

[David750]

Hi Sylviawil, I am so sorry to hear of your situation. I looked after my wife with PSP so fully understand. If you have not already done so please contact the charity CurePSP (psp.org) Hopeline where you can talk to someone who understands both PSP & CBD and can point you to any appropriate support available in your area . They can send information to your physician. They are very keen to educate the medical profession where ever they can. All my very best wishes

[Jrs3]

suggest you consult a good neurologist and have her order physical, speech, and occupational therapy. Also check out availability of palliative care. Been there. Good luck.

[Stellabella121]

I’m glad you found this site. It really does help to hear other people’s stories and get the support from those who have lived this illness. There are also Facebook groups for caregivers of Parkinson’s disease and Corticobasel degeneration.

My husband has CBD, this is year 5.

Sending you strength to get through the next years. Day by day🥰

[COcaregiver]

Hi, Sylviawil, I took care of my husband with CBD for ten years. He just passed this past November. It is a challenging condition and very unpredictable. My husband lost the use of one arm. His brain just forgot he even had it and it was his dominant arm. So, I came up with things like coloring and die-cutting that he could do with his other arm. Keeping my husband engaged and finding things to try to keep his interest were important and helpful.

My husband never lost his ability to walk. He did have aphasia and in the last year, he didn't know who I was most of the time. Hopefully, your husband will maintain his mobility and ability to eat on his own.

CBD is an insidious and difficult condition and as his caregiver, I wish you the very best. It is a frustrating, aggravating, and challenging condition so be easy on yourself if you lose your temper. It's only the condition you will hate and NOT your husband, so keep that in mind and give yourself grace and forgiveness in those moments when coping is difficult. I wish you strength and many blessings in the months and years ahead.

[Mixee in reply to COcaregiver]

I hi I’m Joann Dugan and I’m from Ohio. I am so happy to find you. I have a Cbd and I’ve had it about six years so it’s my left side that’s car that’s been affected so I’m just wondering if I could react to you and talk to you. I go on disease.

[Perrywrinkle]

Hello Silvia. I totally agree with the replies you've already received. My husband passed away in September of CBD at the age of 77. He was diagnosed in 2018. He was a veteran who was exposed to Agent Orange while in Vietnam. We live in north Idaho and the veterans provided us wonderful support, although we did go outside the system to a neurologist who specialized in movement disorders and also to an awesomely brilliant occupational therapist who was responsible for getting us necessary equipment such as a motorized chair, a sit-to-stand, a hospital bed, rolling shower chair and everything else to help make life easier for both him and I. As the years passed we first went on palliative care and then when it became impossible to safely transfer him out of his lift-up recliner (where he spent his days and nights) he chose to go on hospice. I can't tell you how wonderful our team was and without them I could never have been able to keep him home until he passed very peacefully without pain or anxiety. Hospice made this possible. I'm so sorry you and your husband are facing this. If you have questions for me please don't hesitate to respond with them. If my experience can be of any help to others I believe it can help me through this first year of grieving the loss of the man who was the center of my life for almost 60 years.

God bless you, Silvia

[Mixee in reply to Perrywrinkle]

Thank you Sylvia I am so sorry for your loss. If I have any questions, I’ll get a hold of you. I have Cbd also.

[ElMarsam]

I agree with all of the above. Keep reaching out here and anywhere you find support, as it is key. My husband has PSP and accessing accurate information has helped me understand the disease and hopefully be a more patient care-partner. We are here for one another.