I am new to the group and would like to co... - PSP Association

PSP Association

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I am new to the group and would like to connect with CBD patients and families

Bojszi profile image
16 Replies

Hi, Everyone

I live in the U.S. but was very happy to find you. My husband has CBD, had lost most of his executive functions before his diagnosis in Dec 2020, He fell several weeks before his diagnosis, fell and could not get up, and has been bedridden ever since. . He is incontinent, needs to have all of his food cut into little pieces and his drinks thickened. I have a lot to learn and would like to hear from patients and/or family about the progression of the disease to try to gauge where in the cycle we are. I have already found lots of great information for future use, so thank you already

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Bojszi profile image
Bojszi
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16 Replies
ARutzen profile image
ARutzen

Hi there - I am in Atlanta, GA and my mom has CBD. She has been dealing with symptoms for years now, but officially got her diagnosis in Dec 2019. She has significantly progressed within the last year and moved in with me in October 2020. Right now she is very unbalanced, falling almost every week, cannot walk without assistance from a cane, walker or wheelchair, and I've noticed her left side (the weakest) is almost becoming unusable. Her memory is slipping more and the dystonia is becoming more noticeable in her jaw, ironically, on the left side as well. She does have incontinence issues, but nothing that Depends can't handle. I do cut her food up, but she can still use her right hand to feed herself. When I think about her progression, this time last year she was able to walk and travel alone, independently. Now, it's the opposite. Within the last 6 months she has gotten worse, but it has been gradual. I keep a journal of things I notice and mark the date so I can see what things have changed.

Please feel free to reach out, this site has helped me a lot since I found it! Also glad to hear someone else is from the States :)

-A

Mixee profile image
Mixee in reply to ARutzen

Hi it’s mixed also from the states Ohio I have cbd was diagnosed February of this year It was a 2 yr process. It has affected my left side and I’m left handed. There’s nothing pretty about this I just take it day by day. It’s hard to comprehend. Take care

ARutzen profile image
ARutzen in reply to Mixee

I'm so sorry to hear it's affected the dominate side for you. Please reach out if you feel like you want to. Would love to connect you with my mom on Facebook if you're open to that. She also has her left side that's been affected too.

Mixee profile image
Mixee in reply to ARutzen

Hi it’s mixee, I would love to connect with you on Facebook if that’s possible.

ARutzen profile image
ARutzen in reply to Mixee

Hey there, sorry it's been a busy couple weeks - but yes please find me on FB. My full name is Amanda Rutzen. I'd love to link you with my Mom as she has had some changes happen this past month. I think it'd be great to get you guys connected.

ARutzen profile image
ARutzen in reply to Mixee

facebook.com/panda.rutzen that's my page

Bojszi profile image
Bojszi in reply to Mixee

I would very much like to connect with you. As caretaker, I am trying to get all the information I can about CBD

Mixee profile image
Mixee in reply to Bojszi

That’s great you’re taking care of your mom she is very lucky lady to have you. Take care

Bojszi profile image
Bojszi in reply to Mixee

I just wish my husband was at a point where he could talk about his CBD. He has lost most of his executive functions, eg. he can remove a blanket when he is hot, but cannot by himself, think of pull it up when he gets cold. I am not sure how I would deal with this diagnosis. I wish you strength. I would very much like to hear about the disease progress, as I am not sure where we are--probably 4 yrs into it.

Bojszi profile image
Bojszi in reply to ARutzen

Would like to be in touch with you.

Mixee profile image
Mixee in reply to Bojszi

Yes we will keep in touch.

Bojszi profile image
Bojszi in reply to ARutzen

Hi, I just saw your response. I am in CT and there is one support group but only with people who have PSP. In the last 2 weeks, my husband now seems unable to sit up straight in bed. He slides to one corner, no matter where we start him out. I have hospice care for him, as initially I was told that he was dying--it turned out that he was dying from starvation. (The medication did not allow him any control over his hands and he could not feed himself in the "rehab" facility).

They have been wonderful, supportive, have helped with resources. They seem reticent to allow for PT, since he cannot stand by himself. I am trying to see if I can hire someone privately. He also needs a speech pathologist to help with swallowing. I got in touch with the organization today here in CT to see what they can provide.

This site has been really great. What I have started doing is having a Word file CBD and under it I save the information I have gleaned from these pages--one for pain meds; one for symptoms; one for itching, etc. so as my husband has any one of the issues, I can immediately see what others have tried.

Please share your mother's experience, and I will share mine as well.

Mariawatters profile image
Mariawatters

Hi I have CBD but not at the stage you’re husbands at . I was wanted to reach out and I’m sure someone with more experience about this disease will reach out to you . Always here if you want to rant or just talk xx sending love from Belfast Ireland

Bojszi profile image
Bojszi in reply to Mariawatters

Hi, Since every CBD is different, you also can provide useful information to those of us who are dealing with a later phase. If all of you do not mind, I would like to start summarizing what changes are happening with my husband on a regular basis. Hopefully, it will help me vent and help others to possibly learn about the progression.

AliBee1 profile image
AliBee1

Hi. Welcome to the site that no one wants to be on but which will become your international family of support throughout this journey.

You can rant if you feel like it, and just say what you are feeling. There is little need explain things as all of us on the forum, have been there, seen it, done it and because of that will be able to give you so much help and support. I remember clearly one night when I could get no help I went on the forum and asked a question and within a few minutes had a reassuring reply from Canada. It was my Godsend. Take care. Love AliBee

Perrywrinkle profile image
Perrywrinkle

Hi Bojszi! I am just now reading your post from a year ago! My husband was diagnosed with CBD 4 years ago. We are both 76 and live in northern Idaho. He has gone from initially walking with a shuffle and holding his left arm up, bent at the elbow like a traffic cop, to not being able to walk at all without assistance. His left arm is useless and his left hand clenches in to a tight fist. He receives Botox injections in that arm to relax constricted muscles but they are no longer effective. His O.T. and P.T. therapists are wonderful and do what they can to make life easier for him. He needs my help with all aspects of daily living. I recently finished reading a book that was recommended on this forum by a gentleman who was caregiver for his wife. I wish I could remember his name because I'd like to let him know the book has been a Godsend for me. It's called Finding Meaning with Charles written by Janet Edmundson. I believe anyone who's life has been impacted by either CBD or PSP would benefit by reading this book.

This forum is another Godsend and I only wish I had more time to spend reading ALL the posts! I'm happy to connect with you and all the others in our situation.

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