By any other name would smell as sweet" from Romeo and Juliet - (Shakespeare). The meaning seems to be "What matters is what something is, not what it is called".
Something started me thinking while listening to the radio last week. There was an appeal to raise money for Motor Neuron(e) Disease. This "name" and disease seems to be well known (in Oz and UK) not only by health professional but also by the general public. The latter may not understand a great deal about the disease, but its name seems helpful in guessing the basics of the condition. Its medical name is amyotrophic lateral sclerosis (ALS), but in the USA it is frequently referred as Lou Gehrig's disease (after a great baseball player who contracted the disease).
The same awareness cannot be said of Progressive Supranuclear Palsy, although both diseases have the same rare prevalence (about 6/100,000 population), poor prognosis and no treatment.
Diseases are often named after the person (or people) who first "described" it, like Parkinson's and Alzheimer's. Rarely, there is the use of a patient's name, as in Lou Gehrig. More frequently, the terminology is after the cause or main signs, like Progressive Supranuclear Palsy. Recently, diseases have been named after genetic defects (like 1p36 deletion syndrome).
Making the health professionals and general public aware of any (incurable or difficult to treat) disease seems to be a matter of marketing, especially when it comes to finding research funds. As we've all discovered on this forum, PSP (and associated conditions) has both a very low profile and poor understanding even amongst clinicians. Without going into all the reasons for this, perhaps a change of name would be beneficial. Some may know the following….
Charles Dickens may have been first to describe a subject with classical PSP in 1857 in his novel The Lazy Tour of Two Idle Apprentices: “A chilled, slow, earthy, fixed old man. A cadaverous man of measured speech. An old man who seemed as unable to wink, as if his eyelids had been nailed to his forehead. An old man whose eyes - two spots of fire - had no more motion that [sic] if they had been connected with the back of his skull by screws driven through it, and riveted and bolted outside, among his grey hair…. He had come in and shut the door, and he now sat down. He did not bend himself to sit, as other people do, but seemed to sink bolt upright, as if in water, until the chair stopped him.”
How about raising the profile of PSP by renaming it - "the Charles Dicken's disease"? After all most people have heard of him and the curiosity would drive people to Google it on internet.
He was famously on The Michael Parkinson Show and talked about his illness but even then I do not think the condition was actually named.
But I do remember very well when David Niven was on Parkinson when he was in the early stages of the Motor Neurone's, how much publicity was given to that particular condition.
So, you're right, what IS in a name. Incidentally I always tell people that if they google it always spell it out in full because PSP comes up with the strangest of information!
I read your last post with all your frustrations and difficulties. I'm not in the UK and unfamiliar with the system there, so I have little to offer in the way of answers. However, I do hope you'll be able to keep tuning in to this site, and find some solace through others who can share and give advice.
Thanks for the list of names of those who had PSP. It's all food for thought, especially as PSP to the younger generation has something to do with PlayStation games.
Take care.
Great points both of you. Also if you google Dudley Moore PSP you get a you tube video of how it affected him and I think it does mean something to people then as they always remember him as the crazy hyperactive person in his roles of, for example, Arthur and the elf in Father Christmas the movie. Not to mention his crazy one legged person sketch when he goes for the role of Tarzan in an audition with Peter Cook as the interviewer. Sometimes when I describe the effects of PSP people ask if it is similar to Motor Neurone Disease because they may not know the full effects of that but they generally know it is a physical deterioration that leaves a person trapped in their body.
in reply to
Hi daughterno1
Thanks for your comments about Dudley Moore. I've seen the video you mention, and I remember Dudley Moore and Peter Cook in "Beyond the Fringe". I went to see the stage production in the mid 1960's in London (so that dates me!!!).
When I mention "Dudley Moore" (having died of PSP), to health professionals out here in Oz, they look at me blank! I guess it's a generational thing.
Hadn't come across this one, Strelley - have just reserved from my local library (aren't computers wonderful!)
As a fan of Dudley Moore, I would choose that one - but needs to be soon before a generation who know of him moves on. He was involved in "Music for All Seasons" in America.
Thanks for your comments. See what I've noted about Dudley Moore in "daughterno1"'s post.
I think he was not only a fine comedian and actor, but I enjoyed his piano skills. The latter he missed more than anything when he contracted PSP. Not sure if many of our American friends would remember him, but he was in the film "10" with Bo Derek.
I've thought this myself, my mother has CBD, Cortico Basal Degeneration kind of spells it out but Progressive Supranuclear Palsy isn't as clear. Although having said that CBD isn't well known either. I haven't thought of naming it after someone famous that's a great idea.
Thanks for your input. CBD is the sister disease to PSP and even rarer. You are right that it may have the edge over PSP with respect to its name because it does give generalised information about where the degeneration occurs. Do you know of anyone "famous" who has died of CBD?
I just did a quick search on the Internet but was unable to find anyone well known who has had CBD. I've been thinking about your question of adding a famous name and raising awareness. When people on the site suggest products and Ive typed them into google, their post on the PSP website sometimes comes up. I was curious as to whether this only happened with product names so I typed in Charles Dickens PSP and your post What's in a name was there, I also typed in Dudley Moore PSP and daughterno1,s response was also there. If we could come up with a good name and all use it, it would keep coming up when people google the subject being discussed on the our site. Just a thought.
Good thought Jay60. I have noticed our posts coming up on Google before, so perhaps this forum is doing far more than we appreciate when it comes to "marketing" PSP/CBD. Let's hope our message brings more education through the medium of internet searches.
I like it, Strelley. "Who is John Galt?" made a sensational comeback after our 2008 election. I've no doubt the Charles Dickens disease would raise the bar markedly on curiosity and, probably precipitate some serious study among the medical profession. (I'm also a bit biased as "A Tale of Two Cities" has been my favorite book since I was 14 and quarantined with the mumps at boarding school. :))
Dale suffered a pneumothorax last week and was admitted for a few days following the re-inflate procedure. I got awfully tired of trying to explain what progressive disease he has. I'd get the "you must be an alien" look from both doctors and nurses who tried to ascribe down-home Parkinson's to him, then couldn't figure out why Dale was unable to get out of bed and walk. Finally, I'd say, "It's not idiopathic Parkinson's Disease." That was enough.
Up to my ears in the alligator swamp here, but will write again when I can, my friends.
I am so sorry to hear of Dale's challenge and for yours in trying to educate the medical profession.
I decided to print out some of the pages from the CurePSP site and take them with us to appointments, esp. when dealing with a new doctor. E.g. the section on eyes when to his ophthalmologist during his routine exam. I highlighted the pertinent section. That lead to her recommending a neuro-opthalmologist. I felt a little progress! did same the with the speech pathologist. I also take a list of everything Dave is getting in the way of medication and supplements and why he is taking them. I know Dave is still new to the condition with mild symptoms and we are gathering a great team early in the program. I guess I am trying to be proactive and prepared.
Thanks for your concern, Strelley and Christine. The docs think Dale had a spontaneous pneumothorax, but don't know for sure and probably never will.
I listed the house on Dale's first day in the hospital and sold it that night. So I'll be in and out of this site infrequently for the next few weeks. (House sale is a result of the disease, too). We're moving to W. Virginia (VA is too expensive), but we'll be in the eastern panhandle, about 55 miles from Dulles Airport, so not completely in the sticks.
We'll be close to oldest son and family (living in northern VA) and siblings in Ohio. Of course, I still need to do the physician research that goes with such a move.
I think it would make an interesting reality show to feature an older lady who sometimes limps from sciatica, driving across the country with an invalid husband, a 15-year-old arthritic dog and a collapsible wheelchair strapped to the back of my little Nissan Juke. Emmy award time.
We are in Winchester/Stephens City, VA - maybe not too far from you. We are also about an hour from Dulles. Our neurologist in Winchester is Neil Crowe, MD. We don't see him anymore since hospice took over but he was quick to diagnose PSP after my husband's brain accident following surgery. He is young and personable. Where are you in WV? Yes, VA is expensive. Our old house is still unsold. I can't believe another winter with no action. Best to you.
Wow! Caroline, we may actually meet. Our kids are checking houses in Martinsburg and Inwood, WV this weekend in hopes we can make an offer by the first of the week. I'll let you know.
And thanks for the reference of Dr. Crowe. I'll definitely check him out. Will also ask the docs at UT Southwestern, where we presently go, for recommendations. All this makes cleaning the Aegean Stables a lot easier.
Wow, the "Grapes of Wrath" takes on a whole new meaning. You are now the Ma Joad and Dale, Pa Joad. You show impressive strength and good humor. And may God hold you in the palm of His hand.
Christine, Proactive? If you knew all the steps I've taken to prepare for every eventuality including if I drop with a heart attack and my wife can't get to the door to let emergency responders in. I, like you, am all about being prepaired. When I tell other caregivers my plan they look at me with a blank face in awe of my preparedness.
Do tell! Of course, one of the reasons for being on a site such as this one is to find out what others are doing, what to expect and what to prepare for.
Carla, I usually say "you know, the Dudley Moore disease. Remember him from the movie with Bo Derrik "10"? " Then I say "there is an excellent video on PSP and Dudley Moore on YouTube, you should watch it".
I'll take a look, Jimbo. I had seen Liza Minnelli, Moore's co-star in "Arthur," talking about how wonderfully Dudley played a drunk. She added that he actually didn't drink, it was the PSP that made observers think he had.
This same symptom is a reason that Dale doesn't like to talk on the phone any more. His slurring is embarrassing to him --- so very sad.
Brilliant thoughts Strelley. Of course there is the other name for PSP the Steele-Richardson-Olszewski syndrome. Named after three Canadian doctors who first described the signs and symptoms of the condition in the late 1960's. Bit of a mouthful.
Change of topic!
With the survey you undertook recently, did you find any gender differences in the way signs and symptoms developed? I was at a local meeting yesterday where several sufferers of PSP were present, all were at a similar stage of the condition. I noticed the women seemed to have retained the power of speech to a better degree than the men. Statistically the number of people is too small to of any significants, it was just an observation.
Thanks for your input. You rightly mention the name of the three neurologists, and of course, it's other name "nuchal dystonia dementia".
Your other topic was interesting. I had a quick count of those who mentioned speech problems. The survey was about the "first symptom" but many described a short history of symptoms. I found about 5 women and 13 men, in this little survey, had speech problems. This cannot be taken as significant because of the nature of the survey and those who take an interest in sharing on this forum. However, it's interesting isn't it! I could make a very insensitive remark about the talking habits of men versus women, and how that may affect the symptom, but I will restrain myself.
Many early epidemiological studies in the past noted that PSP was slightly more common in men, but recent studies suggest it's equally distributed.
Hi Strelley, Thank you for your reply. Due to the informality of any casual observation it can't be taken into consideration, but the thought you had as to why women may retain the power of speech longer than men was probably the same as mine. I can say this I'm a women!!
More seriously in terms of distribution of the condition it does seem the distribution is probably more equal between the genders than previously thought. The other thing is that PSP probably isn't as rare as we are given to believe and now more people are being diagnosed. This is most likely due to the improved scanning techniques being available and hence the imaging of the brain is much clearer.
The search goes on.
Peter3 That was an interesting observation regarding male/female speech loss. With this type of illness removing all those skills you have learnt I guess it often takes thing in the order they appeared, this would explain that to a certain degree. I teach young children from nursery to age 8 and in my experience the girls generally talk far, far more than the boys. They often also speak earlier and tend to be more grammatically rounded. It does have a bearing n the fact that they fare better in exams than boys in later life and are mostly better communicators. It is often said that the less skills you have in the first place the quicker you are to lose them, too. This also applies to mentally degenerative illnesses such as Alzheimers. I know that surveys in the past have turned up results of men having a 'word limit ' and once they reach this in a day they tend to be quiet.I know this certainly applies to my husband!
Hi Daughterno1, Thank you for your response. Your comments about the development of speech in children and loss of skills depending on how developed they are in individuals may account for people with PSP presenting with a variety of symptoms in the earlier stages of the condition. In the later stages most people have the same difficulties.
Hi Peter 3 yes of course but it also still comes on differing degrees for example mum did not have her major problem with swallowing until end stage came 8 weeks before she lost the battle. Some people have a bigger problem with this earlier. I wonder if it could possibly relate to the speech and articulation muscles and mum was great talker in her time!
Hi daughterno1, Thinking about my previous comment doesn't take into account the area of the brain being affected which will obviously show itself in terms of the development of the signs and symptoms.
My husband was a great talker too and had a huge vocabulary, his speech and swallowing problems started nearly two years ago and now are very problematic. (My husband has expressed his wish not to have a PEG to ease the choking when he is eating. Interestingly, when he is trying to find words to answer a question, he will often reply in a formal style of language. Our daughter teases him about this, thankfully he still has a sense of humour!
To sum up, yes the disease does develop in different ways with people, however, overall there are many signs and symptoms that are common to all sufferers.
Absolutely, and I just hope that the people doing the research are as dedicated as we are, which I am sure they are; it's just that, you must agree, time is of the essence for those still suffering. Hurrah for research!
My thoughts: Why not the Dudley Moore disease? He was a well known movie star and piano player. Many people have viewed the movie with him and Bo Derrik titled "10". That would bring the disease forward many years from Charles DIckens. Also there is an excellent YouTube video of a 20/20 interview (Barbara Walters) on the disease and Dudley Moore. Just a thought.
Thanks Jim for your thoughts. I think from other posts that "Dudley Moore" is a good choice (certainly for "older" people!). All the best to you and Sharyn....take care.
Strelley, Just attended a two day meeting by a group Share The Care who are all about caregivers here in the USA. It was well run with lots of speakers much about Alzheimer's but I understand it is more in the limelight than PSP or CBD. Got some great caregiver tips from other caregivers during the breaks and sessions. Good for me to get away for a day or two also.
Hi everyone I am still reading here although my diagnosis is 'up in the air' however I read one of the letters between my 2 neurologists that referred to me having frontal temporal disorder so Googled that & found an excellent article but cant post to here I know Strelley did find it. I'm having a bad time all round have not passed the compulsory drive test & have to repeat next Monday. Also had bad flu & am still coughing + mucus & my computer was knocked out by virus - computer back & running now so will post more later Marytea13.
hi marytea 13 you re having rotten luck\\ for the mucas i would give dark grape a try i use it for my mucas psp i dont see why it should not work for your flu anyway it will not hurt you \\\\\ if yiu are as diabatic\ i would check out the sugar content first although it says no added sugar anyway mate the sun is shining the birds are coming around for there feed its a teriffic day here in paradise hope you feel better soon matey good luck with the puter as well see yer stay positive i do know its hard but try peterjones qld australia psp sufferer
Thanks Peter yes the sun is shining here after much more rain that usual here in Perth! Last Monday it poured just when I had to do my driving test that I have to repeat tomorrow so am hoping for the best! Mary
today mate and you WiILpass your test tomorrow anyway good luck and all the best fer it as i know we are lost without\ our cars here take care and deep breathes before you start best wishes peter jones qld australia psp sufferer
today mate and you WiILpass your test tomorrow anyway good luck and all the best fer it as i know we are lost without\ our cars here take care and deep breathes before you start best wishes peter jones qld australia psp sufferer
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Hello! My name is Alice.
Ongoing painful constipation with diarrhoea -what can we do? Has anyone else suffered from this? 
Calling the folks with psp
