CBD Diagnosis

[Scoobydoo70]

My dad who is 75 has just been diagnosed with CBD so looking for information on what to expect and consider!!

[Dadshelper]

Welcome to the site but sorry you had to find it. What to expect....that's a hard one since everyone seems to experience slightly different symptoms at different times in the progression of CBD.

Brief summary of dad's battle with CBD. Late 2014 Dx with Parkinson's and treated as such, early 2016 Dx changed to CBD after seeing neurologist movement specialist. Late 2016 in a wheelchair full time, needing lots of assistance. Early summer 2017 fully dependent on care now 24/7. Sept 2018 passed away peacefully.

That's a very very brief summary for dad.

Ron

[Marilyn_cbd12]

Hello Scooby. Agree with Dadshelper - there is such a range in experiences and symptoms and efficacy of medications. My husband began to experience symptoms in 2006 at age 60, attributed them to stress; exams and tests 2010-2012 for presumed early Alzheimers; 2012 saw increasing impairment with specific muscle groups, word retrieval issues and loss of olfactory sense; 2012 CBD diagnosed at regional neuro clinic and Dx confirmed at national neuro clinic. Slow progression until February 2018; now loss of mobility and memory problems growing. Sinemet the only drug that has consistently moderated symptoms and he has tried about 20 other meds. Physical therapy has helped him. Overall, my counsel is to remember that these patients need a strong advocate and a relative who becomes, in a sense, a part of the treatment team as you see more than anyone what is going on. And keep trying different remedies. Nothing is truly going to change the course of the condition, but good palliative care is critical for the patient and for the caregiver. Not sure where you live, but we are in the U.S. The Veterans Administration Medical Center has been so supportive of his needs; physicians in private practice, less so. I think the problem in private practice is that most neurologists who are not affiliated with a major neurological clinic just don't see more than 2 or 3 CBD or PSP patients in a lifetime and either are honest enough to say that they just aren't sure of how to treat or are not forthright and will pretend to know more than they do, with disastrous consequences. I hope you will stay in touch here - it's helpful.

Marilyn

[choclab511]

Hello,

Agree with the other comments. Each case carries its own trajectory. My mother was diagnosed a year and a half ago, but had exhibited symptoms for approximately 2 years prior. I took her car away summer 2017. Feb. 2018 moved her into memory care unit. April she fell broke left hip. August she fell broke right hip. She can walk a little now with walker and assistance. Balance and memory are the big issues for her. It has been a slow, but I would say steady decline. We live in New England and I think this winter is going to be rough.

Considerations: I would try and stay ahead of the disease. I hired inhome care before she "really" needed it and moved her into a memory care, assisted living facility while she was still able to walk and dress herself. I would suggest doing research now so that you a prepared. My mother is 80, tried a couple drugs but nothing worked and had unwanted side effects.

Lastly, I would suggest taking care of yourself. This is a long, unforgiving road you will travel. It takes it's toll on you. So be well, do what you feel is right and take support from others.

Hope this helps.