Hi friends, I am new to this blog. To be honest this is my very first blog. I was googling for CBD and came across this blog. When I read the true stories and experiences of PSP patients and their dear ones Tears rolled down and I cannot stop myself in sharing my story. My husband has been diagnosed by CBD for past two years. Initially they said it was Parkinsons and recently the doctors confirmed that it is CBD. I really don't have a lot of family support. Just a few who are concerned about us. But my husband can make himself to the bathroom, brush and go toilet that's it. He needs wheelchair to walk more than 20 feet and is losing a lot of weight and it is getting hard to understand him speak and looks very week.He needs help in bathing and even though I cook soft food for him he coughs a lot when eating or drinking. He has all the dimentia symptoms and Doctor has said no later than 3 yrs things can get worse. He has a living will refusing feeding tube or life support. He wants to be at home and I am the full time caregiver . I love doing things for him. But I am really frustrated of not knowing when what will happen and the worst Part is I don't even have a job. I wish a miracle happens with my husband. Sorry I am just depressed . But friends your blog gave me a lot of knowledge. I think I still have a long way to swim in my life with my only child! Thank you all & God bless. Mother23
CBD Stages .: Hi friends, I am new to this... - PSP Association
CBD Stages .
hi mothe r23
welcome to the site
cbd is rarer than PSPbut it is agreat site for sypport
hav ee8you joine dht ePSP assoc they hav elots of infor which is areal help too
where do you live?
MORE LATer
lol Jill
I live in Alabama.
Hi mother23,
Just wanted to say I am so sorry for both of you as you deal with this disease. How do they confirm CBD specifically, do you know? It's so hard to tell with these disorders until quite late in the disease process sometimes. I say this because there is a book called Making Meaning with Charles I read last year when my husband was diagnosed. The author works with curepsp in some aspect now, I think. She was told her husband had psp but later learned he had CBD after all. The book helped me prepare myself a bit for the rigidity, eating, and sleeping issues. Other things turn up often now, but coming to this site offers the best opportunity to see what others have done in similar circumstances. Everyone is so very generous and kind here. Please us this resource as you find your way in all this. Hang in there!
Love, RosemarieLynn
Making Meaning With Charles is a fantastic book for caregivers. They tried many different things in their journey and they are all in the book. It gave me strength to get though PSP by reading this book and their experiences. We can all learn from others. I also found it interesting that Charles in the book was diagnosed with CBD but after death PSP was confirmed.
jimandsharynp
Hi jimandsharyn, yes it was a good outline of the ravages of these diseases. It was especially sad that she got the brain autopsy news that he had psp and CBD both and they had a hard time distinguishing between the two. They showed her the cells in the lab, and all that happened on what would have been their 21st wedding anniversary. The book helped me, but I have to say I cried as I read it. ----RosemarieLynn
Hi mother23.
In my earlier reply I mentioned a book---it's called Finding Meaning with Charles: caregiving with love through a degenerative disease. (I wrote Making meaning instead of Finding). Sorry for the confusion!
Thank you Lynn. I shall try to find one.
hi, sorry for your story, im from spain 37 years old, (my father 84 years old) i have two childs and for me its horrible to share time between my father whit PSP and my little childs, because both needs me at the same time....you can imagine this chritsmas i can not go for a walk whit them or go for shooping cause somebody have to take care of my father, i have no help of family only me and my husband but he works....i dont work im feel like you, frustrated cause have to give your time for other your live for others, and maybe we do this for them wiht love but its frustrates when its impossible to stop this disease.....only have to accept that he need us and be more strong, maybe you cray maybe you dont sleep and maybe you wonder WHY GOD? but the only you can do its be foward ever foward to the end. and accept it.....my eyes are purple for crying for search an answer but only you can listen is silence....and have to start start start start again again again every day as if it was the same day one and more time.....be strong please....think that in the world are more people like you you are not alone...all here we are alone but not are the one... send you a hug, dont give up
Hi, do not know much about CBD , only that it is similar to PSP. We found the chocolate puddings very good for nutrition and easier to swallow. Saves you some time cooking soft foods all the time and helps with feeding. Here's a link:
abbottnutrition.ie/products...
You can get these from your doctor if you are in the UK.
This link below mentions some ways of managing symptoms and alternative ways of communicating:
pspassociation.org.uk/getti...
Sadly there will be no miracle but only managed decline. It is good that he made a living will and so you have made some difficult decisions already. All you can do is do your best and try to put plans in place for the end.
Dear Marusela and superman888 thank u for your kind words and references.God bless.
do get in touch with your speech and language therapist (SaLT) at the local hospital. They can advise on the foods and fluids and give you handy hints and tips Our SaLT has been the most supportive and consistent of all the professionals.
Dianne
Thank you daughterno 1. I shall check with our doctor. Dear all friends in this blog I whole heartily thank you all for your concern and help towards a stranger in sufferings. God bless.
Hi Mother23,
My nan was diagnosed with CBD 5 years ago, she has deteriorated since her diagnosis and can no longer walk and it is very difficult to understand what she is saying now. My grandad is still her main caregiver and she lives at home with him as he does not want to see her anywhere else. Its been a very difficult time for the whole family to see her get so sick but everyone is supporting each other and it does help to talk about it. They have tried different medications to see if that will slow the progress of the illness but they have not really worked, i think the main issue is that there is not enough knowledge of the illness and more research needs to be done to find out how to help. I am starting to take part in events to raise money for the psp association as it is something I feel very strongly about. I have found it helpful to talk to people about it and how I am feeling about it and try and support my grandad as much as possible as it can be difficult for him. If you are feeling depressed it is worth getting some help regarding this and see if you can get some counselling for yourself to help relieve some of the stress and have some time for yourself as I think as a carer this is not always done. I know my grandad spends all the time thinking of my nan and doesnt take time for himself.
I wish you and your husband all the best and hope that you manage to get all the support you need
I am also new to this blog and i am somglad to hsve found it My husband was diagnoised a year ago but we think he had symptoms 4 years ealier he can not do anything for himself so i am his main carer 24/7 i get very tired and emotional at times i would like to know what stage he is at he is a model patient so kind and thankfull so i supose i can count myself lucky i sometimes feel like a prisoner in my own home what a terriable disease
lARCHES, I don't think there is a way to definately know what stage a PSP patient is in. Our neurologist at the University of Florida Nerurological Department said as much to my wife who has PSP. Here's my view on PSP. Why worry about what stage the patient is in? Why worry about what is coming next? I personally am getting all the information I can on PSP without worrying about what stage etc. my lovely wife is in. Bottom line is that what stage and what's next doesn't add anything to the care of the patient with PSP. What is important is the here and now of the patients life and how to handle it. Make notes so that if you do have to face something down the road you will have some idea of how to handle it. No doctor or person or documentation can identify how long your loved one has or what is ahead. It's different in most patients to some extent so who can know the exact stage or how much longer a patient may have? I think I have enough to cope with each day without worrying about the stage or what is going to come at me next. This is just my thoughts and like PSP patients PSP caregivers are all different and handle the psychology of the disease differently.
jimandsharynp aka Jimbo
rhank you for your comments whivh i will take onboard wishing you and your wife all the best with this nasty disease
Hi Mother23 I have just lost my nusband to C B D it is a very cruel illness that takes everything from the person with it and is hard for their family i would say just do it a day at a time put as much as you can in place it makes it so much less painfull later my husband had made things he wanted very clear while he was still able he knew early on in his illness what might happen ,it took everything from him but not his smile he still could smile up until 3 days before he died dont let this illness take the good days that you still have and dont forget to smile take care. Mary
Hi Maryelizabeth, I am trying to be cheerful but it is very hard to see my husband slow down every single day. He is unable to speak clearly now . How many years did your husband suffer from this CBD? And I pray god to give you the strength to recover from the loss of your dear one. God be with you dear.
Dear friends of this blog I really thank you for your precious time and patience to help me and advice me. I am still lost with my husbands situation and I really don't want to loose him as I am only 37 yrs. I know it sounds crazy but that's what I feel. I pray for all the patients and their caregivers here who sacrifice many things to care of their dear ones. It is an emotional stress for us I agree. Thank you & God bless.
CBD
Not CBD after all
Time to say goodbye and thankyou
Someone else lost to CBD
