I've found that if my wife has a stressful day (no two hour nap mid-day) when evening comes she is a real "basket case". Her cognitive responses are terrible and verbal directions are VERY slow to be followed. Anyone related to the part fatigue plays in PSP? Strelly maybe you can clue us in on this.
Jimbo
Hi Jimbo,
I don't have the answer for this but I do know that Bob is the same way. When he is either tired or not feeling well (more so than usual), I find his response time much longer, and when he does respond, I have to ask him to repeat several times. Even at that it's a bit of a guessing game to figure out what he is saying.
joan
Hi Jimbo
Firstly, on a personal level, my wife shows the similar symptoms. I have a fairly rigid routine for her, and organise activities every morning, but after lunch she has to sleep. Basically, we never organise anything in the afternoon or evenings (unless necessary) because she is totally fatigued. It is this fatigue that mirrors her poor communication, excessive difficulty in moving, slow eating, increased eye closure (blepherospasm), and confusion about very recent events (but great long term memory).
An Australian group has recently mapped brain atrophy in PSP and found more atrophy in the cortex (frontal and parietal) region than previously described by other researchers. This area of the brain is responsible for cognition, executive function, eye movement control, and other functions like speech control.
People use executive function as follows : - to perform activities such as planning, organizing, strategising, paying attention to and remembering details, and managing time and space.
It's clear that PSP sufferers have real problems with this area, and it is often called "dysexecutive syndrome". Hence, the condition of our wives - as we have described.
I've written before about "fatigue" in PSP. It's quite an elusive symptom to trace to any specific brain problem. However, in the brain of PSP (and similar conditions), there are many areas that have neuron death, and the many varied neurotransmitters (and along with receptors and transporters of these chemicals) are "working overtime" and are not functioning normally. The whole process of energy production for making these chemicals and regulating them lies in the mitochondria (power house bodies) of each neuron cell.
There is a belief that the initiating cause of many neurological diseases is "mitochondrial dysfunction" (they are damaged). The progressive brain damage tends to show itself as "fatigue" in the sufferer, especially when they have performed activities requiring the firing of many nerves (e.g. my wife becomes exhausted after being showered). I've likened it to sufferers of chronic fatigue syndrome, where researchers have identified a leading cause being mitochondrial dysfunction.
I know that my wife wants to sleep more, and I have to stick to a rigid routine of waking her, toileting, washing, dressing and giving her breakfast every morning at a certain time - otherwise she would continue to sleep. Some PSP sufferers, of course, cannot sleep, since there are regions of their brain affected that control sleep patterns (plus problems with medication).
Hope this helps a bit Jimbo.
All the best.
Hi Strelley I am beginning to think I have been misdiagnosed as I don't have these changes. This week I have something 'on' every day including 2/week at physiotherapy. I did post of new neurologist who is taking me off Sinemet gradually & I feel better for that but he did say there is a problem but he doe not know what it is! I see him again later this month. He wants to see my MRI film & I read the report on the last one only today & the radiologist did not find any indicators for PSP - more changes in white matter & atrophy of anterior temporal area. I tried to post yesterday but got 'cut' off from site. cheers Mary
Hi Mary
I think we talked in the past about the confusion over your diagnosis. You didn't seem to present with the important clinical signs of PSP (the Richardson's variety that many people suffer from on this forum). The MRI may well be showing evidence of another problem rather than PSP ( atrophy of the anterior temporal area often leads to language/speech difficulties, and is also affected in FrontoTemporal Dementia, but you show no real signs of the latter).
In PSP-Parkinson's there is less or little of the usual PSP (Richardson's) in terms of falls, swallowing, incontinence, speech, and cognitive issues. It's very much like Parkinson's itself.
I think if Sinemet was working in some way, your neurologist(s) will still be thinking in terms of some form of Parkinson's plus conditions.
I guess we'll have to wait for further evaluation, and trust that the news will be good news in ruling out PSP itself to something more manageable. Perhaps the changes seen on your MRI may be "mild" changes and reflect a normal variant sometimes seen in the ageing process of some individuals.
Wishing you all the best.
Hi Strelley I read the report from MRI 2011. one thing it states 'I cannot see any midbrain volume loss to suggest diagnosis of PSP. The mid brain to pons ratio is well above 0.2 a diagnosis of a ratio of <0.15 is strongly suggestive of PSP.' The new neurologist has read this report but wants to see the film that I will take to him. Mary
They often use the hummingbird sign (showing midbrain atrophy) as a diagnostic test for PSP (although it is not a definitive test, but is very suggestive of PSP once symptoms are well established. They can use it to exclude other conditions).
In your case it's looking more and more like you DO NOT have PSP, so hopefully you'll have a better diagnosis from your neurologist soon. They may still investigate the possibility of other Parkinsonian syndromes. I'll be very interested to hear the outcomes.
Take care
Hi Strelley...would you be so kind as to explain to me the difference between PSP and Parkinsons plus. Many thanks.
Hello nansh6
There is Parkinson's disease (also known as idiopathic or primary parkinsonism) - A disorder characterized by tremors, muscle rigidity and slowed movements.
Then there are similar brain degenerative diseases that have the similar symptoms as Parkinson's disease, but also display other characteristics. These diseases are called Parkinson's PLUS or atypical Parkinson's (because they are not exactly like Parkinson's).
One of these Parkinson's PLUS conditions is called Progressive Supranuclear Palsy or PSP.
In fact, many neurologists do not like using the term Parkinson's PLUS for PSP, because it is unrelated in its pathology and morphology (that is, when an autopsy is performed on the brain, PSP is connected to a problem with a brain protein called tau, while Parkinson's is a problem with a brain protein called synuclein. So, diseases that have tau protein problems are called tauopathies, like PSP and CBD and FTD, while diseases that have synuclein problems are called synucleinopathies like Parkinson's, Lewy body dementia and MSA).
Hope this helps a bit.
Thank you Strelley...my Mam got a diagnosis firstly of parkinson's and then a yr later of parkinson's plus PSP. She also has osteoarthritis, rheumatoid arthritis and macular degeneration in her eyes. Bless her....one of those on their own is enough penance but she's struggling with a lot. She's having terrible trouble with her eyes at the moment and its not just the focus problems ie PSP its also the macular degeneration. But on a whole its the PSP that's robbing her of her quality of life. Her ability to walk is gone and her ability to converse is gone.. She's becoming incontinent and loosing the ability to swallow. Now I understand all of these are typical PSP symptoms but with all of my mothers complaints its this damn PSP that's draining her dignity her values her sense of caring....not to mention her whole physical deterioration! Gosh I'm sorry....I know I'm going on a bit.....but thanks for the opportunity to go on a bit and moan among friends......x
nansh6, we can all relate to your feelings. PSP is a terrible, terrible disease that takes amost everything away from the patient and causes extreme stress on the caregivers. I can't even imagine what it's like in late PSP. No speech, no good vision, incontenance, inability to swallow and then the extreme dignity taker..........the brain knows what is going on but the body can't respond in any way. You vent all you like, we know and can relate to the difficulty and stress PSP causes.
Jimbo
Thank you Jimbo...its just such an ease, as you know yourself, to be able to do this without feeling guilty or feeling judged!
Hi nansh6
Don't worry about "going on a bit"....that is one of the reasons this site exists - most of us have to "vent" occasionally. PSP is a wicked disease and coping with it either as a sufferer or carer is not easy at all.
Sad to hear your "mam" has other problems. As I've mentioned before, so many show PSP symptoms in their 70' and 80"s (average start is age 63). At this age there ore often other medical problems and it makes life hard to deal with PSP (and similar conditions).
I wish you and your mother all the best (and just on a lighter note....it was lovely to see you used the word "mam". I haven't heard that for years, except in my immediate family. Born and bred in Nottingham, I have lived in Australia for 44 years, and we used the same term for our mother!)
Yes Strelley this PSP is a horrible journey to have to take but what can we do only play the hand we've been dealt to the best of our ability! And yes...'mam's the word in our house'!! I'm from Ireland and wait for it......my next door neighbour is from Nottingham :)...so the world is a small place!! Take care Strelley...
Hi Strelley,
I would be very interested to read the Australian article about brain mapping. Any chance you could publish the reference??
Hope you are both well
love
Kathy x
Hello Kathy
Hope you are coping well!
If you Google "Cortical Atrophy Differentiates Richardson's Syndrome from the Parkinsonian form of Progressive Supranuclear Palsy"
you'll obtain two hits...one will give you the abstract (as Mov Disord 2011 Feb1, 26 (2):256-63)
and the other will download the full article in pdf format.
If you Google: "Researchers map brain atrophy in progressive supranuclear palsy" you find a basic summary of the research.
While the research is about PSP and PSP-Parkinson's it is a very good in-depth study of the areas of brain atrophy. It has many interesting findings.
Hope this helps - let me know if you find it and what you think!
All the best
Hi Jimbo,
I too have spoken of the problem of fatigue in my husband on this site in the past. Its another area we all cope with in different ways. For Peter I find he needs at least 12 hours in bed at night before I attempt to get him up. If he needs to be up earlier, I find his coordination is very poor, he doesn't speak and getting him showered etc takes longer than the hour it normally takes. I try to make any appointments for him in the afternoon when he is at his "best". By the evening he is happy to snooze in front of the television and is always ready for bed.
I agree with Strelley that the mechanism of this fatigue is probably due to cell mitochondria no longer functioning efficiently and this in turn affecting the production of neurotransmitters, all essential for normal activities.
Peter's new physiotherapist was keen to increase his level of exercise and got him enrolled at a local gym. After only 20 mins of light exercise he was "wiped" out for 24 hours. We did continue with the gym, but each time he became more tired. Eventually it was agreed with the physio that on this occasion, exercise was not beneficial.
Today Peter is due to meet his new GP, his last one was so good in the care she gave, I feel a little anxious about the change. Providing she is better than his neurologist who, whilst being the expert on PSP in this area, shows so little interest, he'll be okay!
I much prefer to cope with the fatigue Peter has than the sleepless nights we had about 18 months ago when I felt exhausted.
This disease truly reaches every part of life.
Best wishes
Peter3.
Peter3, thanks for the information. I appreciate every little bit I can get from this great group of people. Hope the new GP works out well.
Jimbo
Hi Jimbo,
Well, the first visit to the new GP was okay. She had obviously received a good handover from Peter's previous GP. I asked her if she had ever cared for someone with PSP and she admitted she had not. I then said we have made it our mission to educate the healthcare professionals we come into contact. Past experience, especially in A&E has been one of staff not knowing anything about the condition. The GP responded with "we have a new trainee starting can he come in during the next consultation?" Of course the response was a resounding YES.
My dad is the same. No two hour nap from12-2pm means ver slow fatigued response and poor thinking and reactions.
Soinds much like my husband . He has been treated for Parkinson's for Seven years , He takes Sinemet along with a Rotigotine patch . I have never felt that they have been helping at all
The consultant every time says he isn't very bad he is ok .
Rhey need to come home with us don't .
I have occasionally played around with r reducing the dose of his Sinemet because he seems much worse after taking them .
he hasn't taken it now for two days . I do worry about making him worse but he does seems not to be and even better
Will let you know how we get on .
Our GP who I could say anything to without feeling an idiot has moved practice. and The consultant has retired .
IN LIMBO NOW
Sounds like my hubby too. I insist he sleeps from 130 pm to whenever he wants to wake up - which is generally around 330 pm.. Though there are days when he wakes up early. In case he misses this nap, the evening is a real misery 
sitting in his chair, all the time, trying to sleep and being excessively tired and leaning towards the left -
There are days too when he would prefer to lie down for a short 30 to 45 mins snooze after breakfast and a bath.. And it used to be a deep sleep, making me wonder if he didn't sleep well at night. Nowadays, this snooze has become the norm rather than the exception.
His sinemet dosage is one tab first thing in the morn and one tablet at 6 pm. It doesn't help with anything but movement... The days I have missed his dose, he seems slower than usual - and that reminds me of what I have forgotten :).
As far as movements go, he walks well... But since we have an attendant for him, I don't worry so much about him falling. He does regular exercise on the recumbent bike that we have at home.. 20 mins 3 times a day... Then some hand and neck exercises..he eats well, watches tv a lot... And when I ask him if he is enjoying the program, he will show me a thumbs up speech is zero
And that is what I miss most of alll ...
Padma... ( from India )
Padama, Thanks. There is some comfort in knowing I am not the only caregiver dealing with issues of this kind. Bless you.
Jimbo
Padama, My wife also takes one Sinemet in the morning and one in the afternoon. Tried going completely off it and results were mobility and greater fatigue so we went back to twice a day.
Jimbo
How about head movement? I've noticed in the past six months that when my wife responds with a head nod "yes" that her head barely moves. I have to watch carefully to see the movement. Anyone else have this happen?
Jimbo
Apart from exercising the head, the responses are all with the thumbs-up and the thumbs-down signs. Then I have made flashcards...with choices like sleepy, hungry, etc., etc. he points out to what he needs his cognition is intact and so understands everybit of what I am saying he is slightly able to bend his head forward.. But the backward movement is a little more difficult. The head turns more easily to the right than to the left... Recently I have noticed that when I say look at me and do all the stuff I am doing, he looks and does whatever I am showing him - but I feel his eyes are not directly looking at me.. Somewhat sideways.. Has any other caregiver experienced this ?
Hi Pram, My husband has very little eye movement, most of the time his eyes are either looking upwards, (almost into to his head) or to the right, he also leans to the right when walking, albeit his walking is very limited and never without support of myself. The loss of the eye movement makes people almost blind due to them only be able to look in one direction. Of course the tendency when walking, is to go in the direction in which we are looking. If I wasn't guiding my husband, he would constantly be walking into walls etc.
I'm amazed how cheerful he remains much of the time.
Peter3.
Inability to maintain eye contact is a classic symptom of PSP.
Gosh, my husband sleeps from approximately 12 midnight until 2-3 pm with a shower around 10 in the morning. I feel like he is sleeping his life away. But if I try to engage him in anything he is, as you say, unresponsive and slow to follow instructions. I just go with the flow. I had to drag him out of bed at 7:30 Monday morning to go get his JPEG replaced. He was so wobbly on his feet and it was so unsafe. I was afraid we would never make it to the car. However, several hours later we were back home safe.
The responses from Strelley are very much to the point. The progression of the illness is very well described in the 'Pathway of Care for PSP' which comes under the heading 'professionals' on the PSPA website as I have mentioned before.
My wife's general strength declined significantly as the illness progresses. Something I could also not understand because it is not being mentioned with so many words under the typical symptoms of the illness. So yes, the increasing weakness is very much part of the pathway of the disease and that goes also for any other neurological disorder. All we can do is trying to slow down the progression and / or alleviate the problems.
A strict routine is essential and trying to avoid situations that can be stressful. But at the same time trying to remain physically as active as possible. And to provide, where necessary and helpful, additional support. For example my wife has now for the past 4 years speech therapy. It does not cure the speech impediment, but it slows down the deterioration. And massage. Stiffness in the neck is very common under sufferers of PSP. Watch her arms when she walks and sits. If she lifts them in order to stabilize herself, that will eventually result in difficulties moving the head, developing pain in the arms and back. Apart from massage it is equally important to do each day some exercises. You need a professional trainer who can advise and initially supervise what exercises your wife can do considering her condition. Those exercises do not have to be very long and they are very simple and easy. But they need to be carried out correctly so that the right muscles are being engaged. What you need to avoid is that the tightness of the muscles increasingly restrict movements and eventually pain.
Unfortunately GP's have little or no knowledge regarding skeletal and muscular problems and unfortunately often they do not even recommend or refer you to a specialist. We had to figures it all out for ourselves.
As far as medication is concerned, my wife tried Amantadine, but it had no positive effect only some unpleasant side effects. So we discontinued their use. It seems also that Amantadine seems to provide only some relief in CBD sufferers. It was intended to address the general weakness issue. You could discuss this with your specialist and get a prescription to try.
I do hope that you wife is under supervision of a specialist neurologist.
The only thing my wife takes are supplementary vitamins that are directly related to nerve issues such as vitamin B12, Vitamine D, Coenzyme Q10, seratonin. Also she takes before she goes to bed two tablets of melatonin. The latter to make sure she sleeps well and is rested when she wakes up.
Wow. What a response to Grey January Day
Change in eyes response
Response to sexual urges
