Having lost my wife earlier this year with this terrible disease, and watching this collection of tragic stories and cries for help over the months before and after, it never fails to amaze me the lack of knowledge and awareness about this condition both with the public but more with the medical profession as a whole.
I was hearing the other day of somebodies recollection of how the knowledge and public awareness of MND had grown dramatically over the last few years with the publicity of it. It is also a terrible disease but I do not believe it is any less tragic than the suffering the people with PSP and, their families and carers go through.
I find the lack of knowledge and awareness professionally, and with the general public of this disease both here and the rest of the world is frightening. I understand that over the years many people have died with supposed "Parkinsons"but in fact may well have been the victims of PSP due to the lack of knowledge of even the very existence of PSP. From personal experience I found so many nurses carers, and doctors were unaware of it.
I just wonder if an approach to the press and the politicians with some of the pertinent comments and letters of the suffering that patients with PSP go through particularly as they get towrds the end of life. There are so many tragic stories and cries for help sent to this association, I am sure a few to the right people might just triggeran awakening and some offer of help.
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autex2000
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Hi autex2000 , The frustration , stress, worsening health, misdiagnoses, and mismanagement galore as we try to deal with what's going on with ourselves or our friends or relatives , I agree should be viewed by all as totally unacceptable ! At this point, 12 years down the road in my sister's case , I have found little increased awareness on the part of rank and file physicians or "health care professionals" ! My sister was originally misdiagnosed with ( can you believe this one?) "Endogenous Depression" ! We were initially so thrilled to hear that as it could be treated ; even though the dx made no sense to me in light of her symptoms. By the way, this ( one of several ) misdiagnoses was made by a neurologist who was a Parkinson's specialist ! PSP is defined as one of the "Parkinsonian Movement Disorders" so how could he not be aware that my sister's symptoms were classic textbook symptoms of PSP ?! Inexcusable !! An arrogant dummy !
The explanation that seems to account for this incredible failing is also not acceptable to me , but of course money is involved. A long time ago when I put the question of such a lack of awareness to my sister's very qualified and caring present neurologist , he explained that unfortunately there have not been enough people diagnosed with PSP and the lesser known diagnoses to warrant ( in the judgement of the entities who invest in research and development ) the attention/money targeted for Alzheimer's , Parkinson's , MS. and others. He stated that there are no neurologists out there in general practice who would be able to make their living as a specialist in PSP. In the years since then, there has been more inclusion of the more uncommon neuro. diagnoses in clinical trials and research studies but as you know, the bureaucratic wheels grind SO slowly ! Also, let's face it, just as in any profession. most doctors run the gamut from poor to mediocre and there is also a great shortage of doctors and health care practitioners worldwide !
It often takes a very bright and motivated millionaire who has a personal stake in furthering knowledge about a specific illness to fund the ground breaking research needed to bring attention to the plight of people with lesser known illnesses.
I don't feel that any of these realities justify the lack of basic knowledge and effective care , but as an RN I've noticed a general decline of the quality of health care overall.
If you have a dx that isn't in the mainstream , that requires more than assembly line medicine, it's often a real uphill battle , as we all know !
One of these days I'm hopeful that there will be treatments for illnesses such as the ones we're dealing with on this site ! And although we can't make big earth shaking changes ourselves, every doctor, friend. or person that we inform/educate about what we've experienced directly or indirectly can have a positive impact by increasing the knowledge base and awareness out there.
You write and express yourself so well ! I wonder whether you might be interested in contributing an article(s) to be circulated by a publication such as a newspaper in your area ! Just an idea . If you felt up to it and were interested, that'd be just one grassroots way to bring attention and awareness to these important issues that affect everyone !
In any event, don't give up the ship !
I hope that you're doing well now and my heartfelt condolences on your wife's passing . I hope that you have many wonderful memories of your years together ! Take good care 💜
Sorry for the loss of your wife. I lost my darling husband in may. I agree 100% with you that the lack of knowledge for this disease. When you mention it to staff they just look at you and ask what is it. I had to do a lot of research myself so I could try and understand it. My heart goes out to all who are going through this journey and the families 💜💜💜
Completely agree. My dad was only officially diagnosed with Corticobasal syndrome with underlying PSP in February this year. I had pretty much self diagnosed him last May 23 and had been fighting with his Parkinson's team for nearly 10 months for anyone to take me seriously- for some context I am a actor and massage therapist so compared to the medical professionals involved they should have spotted the signs before I did that something was not right.
I'm 36 and primary carer for my dad. Being such a millennial I post a lot about CBS and psp on Instagram and socials, but as you say a much wider reach is needed. I think half the issue is, is health professionals not either being aware themselves of the disease and so not raising awareness.
I know the PSPA association do have the option to become a volunteer speaker. However if you have lost someone to this horrendous disease, they will only allow you to speak after 2 years since the bereavement.
I totally agree with you. It’s over 10 years since my husband was diagnosed and unfortunately 7 since he died. I never ever found anyone in the professional world that could/would understand his sysmtoms. I think half the time they thought I was making it up!!! I wish!
The only thing that will get it into the public domain is, unfortunately, someone famous to contract this evil disease. I know Dudley Moore tried. Sadly, by the time anyone is diagnosed, it’s far too late to fight any campaign and who would go public with such an evil illness.
I don’t know what the answer is. I know the PSPA do their best with limited amount of money. I guess it’s up to us to keep shouting, demanding better care for our loved ones. Educating any professional we come across. How can a cure come along, if nobody knows it’s there, killing people.
In the Kingdom of Spain, the Council of Ministers is likely to approve a Bill today that will have to be processed in the Spanish Parliament in the next few months. This law focuses on patients with amyotrophic lateral sclerosis (ELA in Spanish, ALS in English).
I have written to the Minister of Health, to five parliamentarians and I have made comments to the SER radio station, highlighting that there are other neurodegenerative diseases such as the different types of PSP, Alzheimer's, etc. as cruel, hard and costly as ALS that cannot be excluded from the objective of this new Law.
If someone in this chat can do something to highlight these facts to the Spanish Government, Spanish parliamentarians or senators or radio or TV stations, it would be opportune and of great help. Calls to attention from outside our borders can have a greater echo.
I think you must have been reading my mind as having read the posts recently I also thought about writing a post such as you have done. No need now !I'm 100% in agreement with what you and the others who have replied have said. There should be more publicity about PSP and CBD.
And in my imaginary post I was going to say that it would take someone famous to be struck down with these diseases for it to get into the public's consciousness, although it didn't happen for Dudley Moore, and then Heady beat me to it !
At least we all feel the same and agree that more needs to be said to raise awareness of these dreadful diseases.
And shame on the neurologists: so called experts in this field who haven't a clue.
"Keep fighting" seems to be the motto, but why should it be necessary to fight so hard for what should be a given.
Virtual hugs to everyone who is, or has been, on this heartbreaking journey. 🫂
I agree with everyones comments regarding getting PSP out there to the wider domain.I lost my Husband this July to this wretched disease. Watching someone you love die a little everyday is heartbreaking. The "Professionals " dont know enough about it & also as mentioned before when I was dealing with District nurses, Occupational health etc etc they would look at you as if you just made it up!!! If only that was the case. On Morning Live BBC1 they ran a slot about Parkinson & I emailed in mentioning PSP but it was never picked up. What can we do??? I'm not brilliant with words but what I am can do is Campaign with help from others that have gone through the experience of caring for someone with PSP. It will probably only take off if someone really big in the Social Media sadly dies from it. Keep on all you caregivers & Warriors of PSP my thoughts are with you all❤
I am far from being a lover of interactive forums but have been introduced to Health Unlocked though my daughter Joanna (Jiggyjo) and the necessity to learn more; however, I am most grateful for the help and information I have gathered, which in many cases is familiar.
My wife Stella has CBD and is now at the stage where she still appears to understand all that is said, but often finds it difficult to utter “Yes or No”. .Stella is totally immobile with virtually no use in her “good” arm, and having to be fed semi liquid food.
She is in a very good nursing home with wonderful staff, but like many other similar residential establishments the staffs are unfamiliar with this horrible disease.
To try to assist the resident nurses and carers at Stella’s home, I have, and will continue to collate some of the relevant information I read from the Health Unlocked forum.
I find that this information is always received with gratitude and hopefully will assist them to understand more of this disease and trust that it will be to the benefit of Stella and maybe others.
I can't wait to see this! I just googled it and it said as of January of this year, 2024, it's in PRE-production, and that Linda Ronstadt and Selena Gomez have met to discuss. Lord be with Linda. I love her music and her voice!!
Hi thank you for reading the article on PSP, did you learn any more about Linda Ronstadt and the PSP, if we needed anyone to bring attention to the is disease she certainly would have the appeal for the press to take note. Though I understand her possible reticence, I am thinking in terms of Michael J Fox and Parkinsons. Best wishes Malcolm
Yes there are various articles if you google her name.. I think she’s been pretty open about it & trying to spread awareness. The biopic will be great if it goes ahead and really shine a light on the condition & reach a wider audience.
I agree there needs to be much more discussion and publicity about PSP , I have found that nearly all my friends and acquaintances have never heard of it and it is very difficult to describe the situation fully. Even with the medical community many have not heard of it! Especially Gp’s although I don’t expect them to know everything. I have printed symptoms of the condition off and always carry a print off around with me. Is there a brief sheet that the PSPA has available for me to hand out, this would help tremendously. My wife is suffering and has probably reached stage 3. Now. Publicity is urgently needed.
Hi The PSPA produce Red Flag posters, I have attached an image below which can be downloaded as a pdf file from the PSPA website, there is also one for CBD
Is there a PSP forum in the Ribble Valley? The other day at the dentist another client heard me talking to the dentist about my wife , he came up to me and said his wife had just been diagnosed. Incidentally if we hadn’t gone privately we would still be undiagnosed!! It was just put down to ‘old age’ (85).
I hate to say it but one of the things that hasn’t been mentioned is that PSP and CBD are more likely to affect older people especially over 65. And certainly in the UK I think it gets dismissed as an old age problem that doesn’t warrant lots of attention. What’s interesting is that MND only started getting media attention when there were were younger adults affected - and they were celebrity athletes because they are disproportionately affected. So the media interest is obviously much greater for a younger adult with young kids who used to be an athlete being struck down by a disease even though it has very similar impact to PSP/ CBD.
I'm so very for your loss. And yes, much more must be done to raise awareness. Many members on this forum know me as one diagnosed with PSP , raising disease awareness is the impetus behind my global advocacy and support efforts.I'm the chair of the Adcocacy and Support Committee for CCF for PSP-CBD. pspawareness .com. As a global group I welcome you, and others on this forum who have experienced the frustration at the lack of awareness with PSP, CBD and MSA to join us to bring about change. You can contact psp awareness.com or the Colleen Cunningham Foundation for PSP awareness on FB... a public group.
I manage to bring up the subject to every doctor I meet. I can change a conversation about apples in Egypt to PSP! I was my Daddy's caregiver his last 2 yrs of the PSP nightmare battle. My only child was in high school at the time and had been close to her Granddad. That only child graduated from a prestigious medical school this year to be a PA in neurology for a large hospital network! Sadly, my Dad passed away in 2017 but it brings comfort to know how proud he'd be of her now! And by the way, she actually DID learn about the existence of PSP in college, but all the doctors I've told, hadn't ever even heard of it
Taken together, motor neuron diseases can no longer be considered as rare conditions. Research into MND requires the same sustainable efforts as cancer and heart disease.
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