During Brain Awareness Week, 14 to 20 March, The Neurological Alliance of Scotland is launching a new campaign to highlight what it is like to live with a neurological condition.
They would like your help to make sure PSP & CBD are represented in their activities and so are asking for your answers to the above question.
If you would like to help the campaign, please write your answers in the comments below 👇👇👇 Thank you!
I would love people to understand that PSP isn't Parkinson's. So many assumptions are made - both by friends and medical people - when they hear that it is a Parkinsonism, but most of those assumptions tend to be wrong.
Thank you
I would love people to understand that just because someone has problems talking & may take longer to assimilate information it doesn't mean they don't understand and either aren't spoken to at all or are treated as a small child. I think alot of people thought Mum had had a stroke and thought she couldn't understand them, which was so untrue.
💯 agree — it is very frustrating
I fully agree with previous comments. I think people need to be aware everyone is an individual with psp or cbd & though there are similarities behaviours can be quite different. I'm sure my husband understood everything but could not show any emotion& could not communicate for the last year of his life.
Thank you for sharing
I have CBD . I wish there was a lot more awareness of these two conditions CBD and PSP . I was still able to work up until 3 months ago . I wish people would understand that although I have showed up to an occasion that in maybe one hours time I could become totally fatigued and struggle to talk and walk that “they don’t understand as I was fine when I came in “ as if I’m putting it on for attention ! … so I suppose I’m trying to say I wish I had a voice . I’m sick of trying to explain that although my alien arm moves that’s all it does . I struggle to shower , dress , blow dry my hair , cook etc . Im challenged continually by people and have been even asked to show them what I mean!! I could go on and on butt yes we need awareness . I
Thanks for sharing Maria
Like others, I was utterly frustrated by the blank looks from health and care staff. They would talk over John, yet he understood the horrors of it all. Usually the label was dementia so I started every sentence with - John doesn’t have dementia. Even the chc funding assessor had no idea what PSP was. Why is MND so much better understood?J
I wish people especially the medical professionals would understand that many or some people given this devastating PSP diagnosis would like someone to give the time to talk to them about it - to explain what's going to happen rather than skirt around the edges or say read about it. To give time to encourage an individual to ask their questions, to provide counselling support, to give time to, to talk about what might or might not happen and how they want to live. There are many great professional specialists who support on specifics eg physios, speech and language but no one who who looks at the whole picture and supports with specialist knowledge of psp who spends time with a recently diagnosed patient to. My husband has support from many specialist areas but keeps saying but what's going to happen to me and no one answers and I can see its a tremendous blockage to him accepting the diagnosis and living his best life now while he can
Hi Mllidog I can really empathise with you & your husband as our experience has been very similarMy husband, Bob definately had symptoms 3-4 years before he received a definate diagnosis of PSP.
During which time I felt he was treated either as if he wasn't there or incapable of understanding.
Recently his condition has deteriorated leading to his becoming very depressed. Partly, I think, because he has been in denial.
I think it would be much kinder if professionals were open & frank about the progression of this condition &, as you say, gave time for Bob to talk about it & ask questions.. So, at least he was forewarned as to what to expect
I must add that we have an excellent speech therapist who is determined to find Bob a counsellor who can work with him, giving the time needed in view of his lack of language.
I don't know if this helps in any way but please know you are not alone. There are many of us struggling with this condition and I believe that together we are stronger than on our own
Best wishes to you both
I wish that care homes understood the mix of symptoms that might arise and proactively watched out for progression. I wish they recognized that the slowness of thinking means that dashing in and out means so many needs are not met.
I'm both grateful for the careworkers who help me with my husband's care with PSP and frustrated with them for not doing a little more to learn about the specifics - such as freezing and leaning. I have tried to educate them from the beginning, copying the PSP care sheets and handing them to Neuro doctors, medical staff and nurses and direct care people. Yet they still try to convince my husband he should try to sit up straight, stop taking risks, stop being impetuous, try to get a normal night's sleep, etc. I've stopped trying to explain the PSP brain to them. Family and friends sadly aren't comprehending as well. As the spouse who sees it all 24 hours a day, and having seen the deterioration of his abilities, I just keep doing what I can to keep his life comfortable and as normal as I can. I document what is happening just for my own mental health, as if I write it down , I can get it out of my head. Funny. I spend a lot of time trying to outsmart PSP. PSP has changed the talented musician and artist I was married to for 36 years into a person who is unable to do anything on his own. He has rarely complained even though everything has been taken from him.It has changed everything about our hopes and dreams, and has separated us from our family, since we can't take part in our grandchildren's lives and activities. It is also a lesson in loving a person in a much deeper and way. It takes a lot of care, energy and resources to continue care at home in late stage PSP, and I thank God for hospice and our part time care staff. I appreciate the families who have loved ones with all kinds of neurological issues, disabilities, cancer, etc. We learn and adapt and create and fight and survive and laugh and cry and wonder. We never dreamed this would be the way we'd live our golden years.
In a big way, PSP and covid have taught us to appreciate the moments, stop worrying about the small stuff, be strong in faith. There is no magic cure for PSP, but it has allowed us time to spend together in our home which we love, quiet days without the stress of running to a job and dealing with the confusion created by covid over the past 2 years. We try to find blessings in little things. Thanks to this group and CurePSP group which provides a practical and loving atmosphere to express whatever needs we PSP folks have.
Thanks to all who have contributed their stories, because it's like being lost in the wilderness when a person is diagnosed with PSP. hugs.
poll,how many years and stages PSP &CBD 
Spread the word about PSP!
Do you know about palliative care?
