First Symptom Survey - Last Comments

About 33 respondents)..

Remember that many symptoms are part of the Parkinsonism range and not specific to PSP. Even changes in the nervous system in old age can produce some similar symptoms.

1. While motor disturbances (balance, gait, posture, falls) are one of the first observable symptoms of PSP reported in literature, this anecdotal survey gave only 18% for this symptom.

It is well documented that only a very small percentage of sufferers experience "tremor" (as in idiopathic Parkinson's). This was borne out in this survey .

(Motor problems, also characteristic in Parkinson's, are mainly about damage in the midbrain and basal ganglia areas).

2. There were more who described some form of personality change as the first symptom (50%). This may have included depression, apathy, behavioural changes, mood, thinking, poor organisation and so on.

Studies have shown that over 80% of those who used to be diagnosed with depression were misdiagnosed and actually had "apathy". Thus, antidepressants had been given unnecessarily.

(These changes occur, mainly, because of damage to the frontal lobes. The pseudobulbar affect of excessive laughing and/or crying seems to occur later in the disease. The basal ganglia are also involved with emotional control).

3. Micrographia was an interesting observation as an early symptom (24%). This is small, cramped writing, almost exclusively a symptom of Parkinson's.

(This also is considered a frontal lobe problem)

4. Word slurring/speech problems were identified as the first (or very early) symptom in 30% of sufferers in our survey.

(Slurring often results from damage to circuits involving cranial nerves controlling the face and mouth muscles.

Difficulty word finding is often attributed to frontal lobe damage. The inability to organise and plan comes under the heading of the controversial name "dysexecutive syndrome". This is usually frontal lobe damage, but other brain areas have been suggested).

5. PSP takes its name from eye problems (vertical gaze palsy in particular). There is a very good description of symptoms on the CurePSP site that talks about an early problem of accidents while driving cars, but it says the reasons are unknown.

I have made a provisional reason for poor driving (scrapes and accidents etc) as being connected with the eyes, rather than other possible causes.

(It is likely to be connected to the "visuomotor" system that involves vision and movement. This applies to writing also).

Problems with eyes, as a very early symptom, was shown in a high 54% in our survey.

It is often suggested that vertical gaze palsy becomes a problem as a later symptom (after 2-3 years). However, those very fast eye movements (called saccades) that are necessary for "best vision of objects" may well be damaged earlier than the muscles that move the eyes up and down.

6.Incontinence as a first or very early sign only occurred in 2 sufferers (with fatigue in one).

I'm assuming fatigue as an early symptom was not mentioned in most of the posts because it occurs when there is a build up of the severity of symptoms (effort required in walking, moving, talking, swallowing, thinking, seeing and so on).

Rarer symptoms of a minority in the survey:-

a) NO (or very late) eye problems.

b)"Grasp reflex". (My wife now tends to grasp and hold onto items that I need to remove from her - and I'm not referring to money!)

Since we were only looking at the first symptoms, I have not mentioned the others that occur later such as dysphagia (Although, as I mentioned in my first post on this survey, this swallowing/choking symptom could have been the FIRST one shown by my wife).

What does all this mean?

Well, most confirms with the literature that emphasises the finer details of PSP.

How do the clinicians join the dots of these early collective symptoms to direct them towards PSP/CBD rather than Parkinson's, Alheimer's, depression etc etc?

[shasha]

HELLO STRELLY - GREAT WORK YOU HAVE DONE - THANK YOU

[Pram]

when was this survey done?? i dont seem to have received it

padma ramachandran.

[MaddyS]

Thank you strelly.

Maddy

[NannaB]

Very interesting reading Strelley. Thanks.

Nanna B

[Greenbee]

Very insightful. Thank you

[Hidden]

The thing I found was that because I am offspring rather than spouse and therefore not living with Mum was that there were symptoms going on that she was not aware of herself and could only be observed by others. As I spent all day with her at weekends for the 4 years pre diagnosis I spotted things like speech slurring and strange decisions and handwriting and all the other things but unless you already know about PSP you would not as a lay person think there was anything underlying other than age as mum was 4 years into PSP before I became extremely concerned about her falls and unpredictability (dis-executive syndrome)so on.With hindsight she had all of these symptoms but some of them she masked very well initially. Even when she was being seen to have her cataracts done the nurse became quite exasperated because she wanted mum to blink quickly but mum's blinks were incredibly slow. At that point we were seeing the optician as mum couldn't see when she looked down and mum would stare at us in such a way we felt she was staring at our stomachs or something that she wasn't telling us about (obviously the fixed gaze). It was only when she began stalling when walking that I asked to see a neurologist to see if she had parkinsons. That was when he said based on her fixed gaze and balance and writing and slow cognition he would predict she had PSP should the MRI and PET scan correspond. which they did and then we had a rapid descent after that in which we were always on catch up, trying to address things as they arose. However they were progressing so fast and mum only lasted 18 months after diagnosis.

A point I would make is that here we are only finding out afterwards and we need to get people to know these things in advance.

[Hidden in reply to Hidden]

Hi daughterno1

I absolutely agree with your comments. As you may have read, I used this little survey to identify the prevelance of "personality changes" as a first symptom. However, the survey raises again the issues that you have addressed in this post. Even those who are living on a daily basis with their loved ones see those apparently unconnected symptoms, and find the medical profession slow to identify PSP/CBD. We certainly need to find ways of introducing more eduction in Medical Schools and GP training, especially since these types of neurological diseases will be more prevelant in coming years as the population ages. Some on this forum were also concerned that many of the clinicians and allied health workers take little interest both before and after diagnosis.

It is easier for doctors to diagnose such diseases like Parkinson's if they SEE something like a tremor (70% patients present with this symptom), but with PSP most sufferers have no tremor. Early symptoms in PSP may be missed or not talked about to a GP (like small handwriting that points instantly to something like a Parkinson's related condition), and it seems to take a long time to join all those symptom dots that we have talked about.

The other comments I hear relate to the fact that PSP and similar conditions have no treatment and so doctors may give minimal advice as they feel nothing can be done.

Raising public awareness of PSP is always going to be helpful, but as you say, carers need to find an early diagnosis and not one that occurs very late in the course of this disease.

Take care.

[Hidden in reply to Hidden]

The most disappointing thing is that my PSP advisor was on the brink of bringing together professionals from all walks in Medway for training at mum's nursing home but just as it was about to get a date it was withdrawn due to cuts and it was decreed that the Parkinson's nurses would basically educate on a need to know basis as they went on their rounds! Although I understand that at least mum's Parkinson's nurse was working directly on behalf of the neurologist it still leaves open a HUGE gap regarding diagnosis in the first place! Bearing in mind mum was being seen by a consultant in a balance clinic for 4 years pre diagnosis and he decided that as the exercises weren't working to simply sign her off! All her 70 year old semi retired GPs had done was to issue her with statins with no further testing it was just left to me to move her to my own GPs who I knew wouldn't just leave mum as she was. They knew I had SRN training and common sense and listened to me. Mum was immediately sent to a neurologist. Even then I was the one who had to print off things from PSP sites and what mum's advisor said to literally educate those people dealing with mum. I did feel like I was whistling in the wind. After mum passed it took several months for my BP to drop back to normal (never had issues with it before all this and its been fine ever since) and I know it was the stress of dealing with the professionals at the bottom of it. Utter frustration!

[Hidden in reply to Hidden]

I can relate to your frustration. My wife had personality changes (mainly apathy and "distance"), difficulty with words, writing changes, and falls resulting in broken bones. Her GP sent her to a falls clinic, and she had a clinical psychologist's assessment along with a Geriatrician's input. The outcome was a suggestion she did not have dementia (but had frontal lobe deficit), nor balance problems due to the "usual" things (BP or ears etc), and her condition was, according to her Geriatrician "multi-faceted" and mentioned "age"!

This was not a diagnosis, and this took 18 months to come to this nebulous conclusion. ( A month before this unremarkable declaration, she was found to have breast cancer and within a week had a mastectomy).

I decided to find an answer myself and within a short time after the Geriatrician's comments, I decided it was PSP. I asked my wife if anyone had tested her eye movements at the clinic (or the optometrist she'd seen for new spectacles). She didn't really know. So, I tested them and found she could not voluntarily look down (but her eyes could move involuntary as in the "dolls eye" test). I was now 99% convinced she had PSP, and told her oncologist (breast cancer). She thought I might be on the right track, but she knew very little about PSP. I requested to see a neurologist via the GP. Then 3 months later a neurologist confirmed my diagnosis.

So it took about 2 years to have a difinitive diagnosis (by clinical signs and also an MRI showed midbrain atrophy) from the symptom of balance and falls problems.

From that point on, I was the one educating everyone about PSP when I attended hospitals and clinics. As a retired medical scientist I think I have been able to convince them I have a reasonable understanding of this disease with respect to its pathology, symptoms and management. Some have respected my "evangelical zeal" in educating them about this disease, especially our speech therapist and physiotherapist. My wife's Geriatrician is now on board, but the whole process has been stressful. My blood pressure is OK for now (from my last check-up), but who knows about the future, as my wife has a tough (I could use other words) journey ahead.

All the best.

[nansh6]

Thank you Strelley...this is interesting reading!

[LyndaEllis]

Thanks so much for doing the survey Strelley. It was very helpful. I look forward to any other similar surveys you do.

[summergirlx476]

Thank you Strelly for doing this survey for us. It is very enlightening and I have realized a lot about my husbands early symptoms that I/we had no idea about. Good work!

Linda