New to CBD

[Pooches]

Hi. My father in law has just been diagnosed with CBD and I want to know more about it. Also living with it and caring for someone with it. At the moment he is doing well and just relieved that he now knows what he is facing as he thought he was going mad.

[Dadshelper]

Welcome to the site. Sorry to hear about your father's diagnosis but you've found a great resource. Use the search box at top if of page, ask questions and remember not everyone who has these diseases will exhibit the same symptoms at the same stage if even at all.

Telling us what part of the world your from will help the community give you the best advice as to medical and government resources.

Since your father is well I'd recommend looking at what his wishes for future care etc are, appointing someone to be his Power of attorney and healthcare advocate.

Ron

[Hidden in reply to Dadshelper]

I was just going to leave you a message about pooches wanting to know more about CBD but you already posted.

😊

[Pooches in reply to Hidden]

Thank you.

[Pooches in reply to Dadshelper]

Hi Ron. I am from England in the Midlands. We as a family have noticed changes in my FIL more specifically in the last couple of years. He is 71 and up until last year was riding a motorbike. In the last 6 months we have seen significant changes. He suffers with tremors mainly in his legs. Speech issues. I think for us the difficult part has been understanding his symptoms. He has changed as a person going from a very independent lone wolf to needing us all daily. He is curently in his own home and managing most daily chores in his own way. For a while he thought he was going mad and to be honest so did the family. You really couldn't write some of the things he has described feeling in his body. So for us the diagnosis has been somewhat of a comfort as we now have something to understand and work with. I fear we have a very bumpy road ahead and finding this forum feels very comforting at a time of unknowns.

[raincitygirl]

Hi pooches,

I agree with Ron above, there is so much to say about CBD that it’s hard to put it in an initial post. If you have any specific questions, you’ll find this community is more than happy to respond and give you some ideas. The search function is pretty good. There are at least seven years worth of historic post strings here.

For general information about CBD you can also look at the PSP Association of the UK website which has really good overview materials. (It’s the PSP association that sponsors this website here) . If you are in North America CurePSP is the main website dealing with both PSP and CBD.

I hope if your FIL is well enough, he will take every opportunity to fulfill his “bucket list” now - as apathy, mobility loss and cognitive loss may likely interfere with any such wishes later on.

Lastly, please keep an eye on your father-in-law‘s main caregiver, as caregiver fatigue can set in very early on. The caregiver needs breaks away from the patient - not just because of physical load but because of constant attention, dealing with the stress of changes in the competence of the patient, taking on new tasks that the patient used to do, and just worry and fear!

Good luck and let us know how you’re doing

Anne G.

[Pooches in reply to raincitygirl]

Thank you Anne. You are very correct I seem to be the one he has connected closely to since this began. Phone calls in the night when he can't sleep. I believe are just the begining. Thank you for you advice and kindness.

[Dadshelper]

Since you are from the UK, Kevin_1 is very knowledgeable on your NHS system, I am from the US, and some of it's services. Keep your FIL active with exercise and outings for now , follow his GP/neurologist instructions.

The first things for dad we noticed were a few falls and the loss of writing skills, actual fine motor skills altogether.

Does he have someone with him at night? If not it may be a good idea to consider a overnight carer in case he'd have a fall and be alone.

Ron

[Beads0122]

Pooches,

As we often say welcome to this site, but we are sorry that you are here. I have found a wealth of information(searching past posts is very helpful), ways to adapt to address issues that arise from this disease, and emotional support. The most valuable aspect to me has been being a part of a community of caregivers at different stages of the disease who truly understand what we are going through and showing caring and kindness to help us through the difficult times.

One aspect of CBD/PSP which is especially cruel is that the patient is fully aware of their difficulties and continual decline of capabilities. So it is common to feel like you are going crazy, or struggle with anxiety and depression.

Your father in law is lucky to get a diagnosis this early in the disease. Many of us have misdiagnosis until late into the disease, not knowing what is going on. Your FIL can at least prepare for the difficulties that he will most likely see. He is very blessed to have a daughter in law that shows the concern and compassion like you.

Wishing you and your family all the best as you deal with this disease,

Bobby

[Pooches in reply to Beads0122]

Thank you for your kind words. Xx

[Ettavb]

So glad you’ve found this site so early on in the diagnosis. As the secondary caregiver I went through three years of doubting my sanity (primarily because my mother was in deep denial and had some significant personality changes that included lying and being unduly secretive with me — as a way of denying the changes that were terrifying to her). When I finally found this place it helped validate many things and gave me confidence on how to approach things going forward. My mother was also very much a “lone wolf”, exceedingly independent, super smart, self-made woman. She first started showing symptoms 14 years ago in her late 60’s. She is now 80 - a milestone she was very pleased to see.