I'm hoping someone can help with advice in respect of my Mother. She was diagnosed as having Parkinsons in 2008 but her condition has deteriorated significantly. She is now unable to walk unaided, I cannot understand a word she says, she has trouble breathing, unfortunately struggles to control her bladder and struggles with eating. She falls daily and although she manages to smile through it, life is hard for her.
During our regular hospital visits, she had hoped for deep brain surgery but was told that was a no-go, as her cognitive tests showed signs of deteriioration, we are now in real hope of some sort of new injections into her intestine which will improve the input of endorphine (according to the NHS, this costs £30,000 per year and is often rejected).
Looking at the signs of Multiple Systems Atropothy, and PSP, it jumps out to me that she is in the advanced signs of either of these (particularly MSA) especially as she is only 59 and is also showing signs of dementia (although not overly forgetful or incoherent, my wife is a trainee Doctor and believes she is showing signs of this).
On our last visit with the Parkinson Nurse and Doctor, they do not think its PSP or MSA because when she falls she does not black out, she simply loses balance. It is reassuring that they think it is not one of these but the symptoms of MSA and PSP jump out at me. One one hand, I don't want to mention about the signs of dementia, as it could reduce the chances of these new injections.
I need the advice of any people suffering this, or those who have cared for these unfortunate people on what they think it could be, if the NHS has previously made mistakes on diagnosis and any advice on how to care for her.
Thank you
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YipYapStaam
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hi i was dxd with PSP dec 2010 and am still here upright most of the time
i fall daily; cannot write anything down ; my typing is now dyslexic as well
but i am good and hope to get to my 70th birthday 18 months from now
your mum's symptoms do sound like a Parkinsonism plus type of syndrome but she needs t o see a movement disorders consultant who can give a better dxs than she has at the moment
i fall and never lose consciousness jut my balance and now have bladder and bowel probs
i have great difficulty doing up zips buttons and my co-ordination is v poor so have given y
Hi. Our Neuro Surgeon told us that if someone has Parkinson's they fall forwards. With MSA they always fall backwards. I don't know how true this is. My Dad always fell backwards. He had MSA and PSP and he never blacked out when he fell. Hope this helps you.
PSP is like so many neurological or any other disease come to that, no one person necessarily follows the same progression, look on this site. No one person has ALL the symptoms, no one person deteriorates at the same pace as another. What I am trying to say is, tell the neurologists that you want a definitive diagnosis, tell them if they can't give you, then tell them to find another neurologist who can.
My husband has had PSP for 8 years now, he has NEVER fallen backwards or blacked out. He has most if not all of the other symptoms.
Finally, our specialist told us that almost always the final markers if you like to diagnose that it is PSP and not Parkinson's are
1 Levodopa/Sinemet has very little or no benefit
2 The eyes as the patient has no downward gaze, they can't see anything.
i agree with dorothy above as i have psp ( first dxd as Parkinsons) but as dorothy stated the meds, and i had many of them, did absolutely nothing for me - I ALSO HAD MANY FALL BUT NEVER PASSED OUT -- SO I THINK YOU NEED AND HAVE A right to get a proper dx - also the downward gaze is most indicative of PSP - i cannot see the Food on my plate CLEARLY as i hAVE BLURRED VISION TOO - SORRY ABOUT THE CAPS BUT I DONT ALWAYS NOTICE I HAVE HIT THE CAPS LOCK KEY AND IT WOULD TAKE FOREVER TO KEEP GOING BACK AND CORRCTING IT
Thank you to all of you for taking the time to reply. This forum is fantastic because I get the opportunity to speak with those suffering with PSP (or related illnesses) or those caring.
The point from Coleen and Dorothy about finding a Neurologist who can diagnose illnesses is interesting as it has been 6-7 years now and by looking at symptoms on the internet, I would say it is either PSP or MSA, however, if it is MSA, she would only have a year to live.
Dorothy, we are from Coventry/Solihull and have been regularly visiting the Neurological Dept at Birmingham Hospital.
As far as I understand it, these illnesses are only diagnosed after death. Is that true, or do Doctor's make the diagnosis prior to death?
Sharon, no problem with the typing at all and yes, I tell her that everyday!
Yes, a positive diagnosis can only be made by checking the brain at death. These diseases (MSA, CBD, and PSP) vary from person to person. Symptoms vary from person to person. Example: My wife diagnosed with PSP did not have mood swings, laughing at odd times, anger, apathy, excess saliva, thick saliva, etc. etc. All of these diseases are NOT one-size-fits-all so there are NO guarantees of anything (length of life, what comes next, how bad will it be, how will they die, etc.) As I said before don't waste precious time on these unimportant things. Love your patient and give them the best care. Take each day in it's own time. Recap the day at the end being thankful for how you got through it. Jimbo
My Husband Was diagnoised by his neurologist with cbd/psp He was also falling backwardslbut still had his memory he walked around most of the time and looking at him you would say he was drunk He was only diagnoised with this 2 years before he passed away the symptons were there for some years when we look back hope all will be well for you
Hello YipYapStaam
Just noticed your post.
There is a great deal of overlap with the conditions you describe (Parkinson's, PSP and MSA). However, after the period of time your mother has had symptoms, there should be a clearer picture from clinical signs (and scans like MRI and PET). It's true that a definitive diagnosis can only take place at autopsy, but the current statistics suggest that neurologists specialising in movement disorders (particularly all atypical Parkinson's) diagnose correctly most of the time.
The symptoms you describe can be attributed to PSP. Has she had an MRI because it may (in most advanced cases) show midbrain atrophy with the "hummingbird sign", and a different picture with MSA (the "hot cross bun sign")? However, although MRI can be very useful in distinguishing Parkinson's form PSP and MSA, (and other conditions), it is not a gold standard because some early MSA patients may have a normal MRI. (I don't want to confuse the issue, but I'm sure I will, by telling you that there are several subtypes of PSP and MSA. For instance, PSP and MSA have one type that closely resembles Parkinson's - called PSP-P and MSA-P).
Other cardinal signs for PSP .... vertical gaze palsy - they cannot look down (or up) because of damage to the area that controls the oculomotor nerve which makes the little muscles on the top and bottom of the eye function. Sometimes at a late stage, sufferers other nerve damage (abducens and trochlear) and cannot look horizontally, so their eyes are "fixed". Also, when given l-dopamine most PSP (and MSA) patients have no or very short lived response (with respect to their movement).
The idea that she does not have PSP and MSA because she does not fall backwards is misguided. While the standard texts suggest they fall backwards..... (unknown cause, but sometimes suggested that having their neck extending backwards may one of the reasons. Yet half PSP patients have their head bent forward and they still fall backwards)......in many PSP patients they can fall in all directions.
It becomes clearer that a person has "classical" MSA when they have far more autonomic nervous system damage than in PSP or Parkinson's (particularly things like blood pressure, and breathing problems). Additionally, MSA sufferers will probably have tremors (less than 10% PSP have tremors). The idea that mentioned she does not have PSP or MSA because she does not black out is also misguided. In PSP and MSA they lose their balance, rather than black out. However, in MSA they may fall and black out when arising from a chair or standing still because they have orthostatic hypotension (low blood pressure). It's a double whammy for MSA sufferers!
If she has had symptoms for about 6-7 years remember there is a similar prognosis for PSP and MSA (depending which study is being used). Broadly speaking. both conditions have about 50% of sufferers pass away after about 7 years (but there is a wide variance - most fall in the 2-17 years range and it will depend on what "type" of PSP or MSA ).
Regarding dementia...PSP and MSA sufferers usually do not exhibit the type of dementia seen in such diseases as Alzheimer's (unless they have a co-morbidity). It's more about cognitive dysfunction, and called sub-cortical dementia. It mainly affects the ability to recall words/phrases and inability to plan and organise. This may "look like" early Alzheimer's (AD) and sometimes it is diagnosed as such, however, inability to initiate conversations or taking ages to find words, is not AD or similar. Mostly they have very good long-term memory and even short term when they can find their words, and are always aware of their surroundings (even when speech has gone).
With all the literature available to doctors and neurologists I'm sure they can make an informed diagnosis (despite the overlap in these diseases). Whether PSP or MSA (or similar), the treatment approach is the same. There is no medication to stop the progress, and many neurologists just treat the symptoms as they arise.
(Deep brain stimulation has not been succesful in diseases like PSP and MSA, mainly because of the extensive areas of brain damage. Some selected Parkinson's patients have had some beneficial outcomes with reducing tremors with deep brain stimulation type procedures).
I wish you all the best as you try and find answers for your mother.
Dear Strelley....also to add a note to your extremely well written article I feel that an expense of 30,000 pounds might well be unwise...what do you think...I know we were told by a stem cell Dr from California to spend $ 90,000 which our nuro in Montreal told us to destroy this Dr,s tel number.....Regards,Rollie
Yes, I agree it would be unwise to spend such money. I had some difficulty in understanding what sort of treatment the intestinal injection (described) was used for, especially as the NHS had made some comment about it (I'm not in the UK, so I'm not familiar with some of these things).
Your neuro's decision about stem cells was also wise. The evidence of benefit for stem cell therapy for PSP/CBD etc is scant, and techniques have many problems - and the cost exorbitant. We all want a cure for PSP, but some "practitioners" can easily exploit those who are (understandably) emotionally desperate for that cure but at the time are not using reasoned and wise judgement. We need the experience and wisdom of each other on this forum to help travel this pathway of decisions that affect our caring for our loved ones.
hi Strelley,that is correct, 7 years ago I would likely have gone for it,there is not enough knowledge in the medical field to steer a person in the proper direction,this site surpasses the medical field!,Regards,Rollie
Dear Yip Yap Staan and All,
It is very difficult to get an exact correct diagnosis until autopsy, but some consultants really are better at it than others, I agree, you need a movement disorders specialist. With my father we went from polymyalgia rheumatica,to Parkinson's, MSA, to Lewy Body dementia and eventually to a choice of cerebrovascular pseudo Parkinsonism or PSP. What ever name it was being treated for, there was very little or no improvement in his condition. Last Saturday I received the autopsy report on his brain and spinal cord. It lists six conditions present in his brain.
1.PSP
2.Alzheimer's pathology (A3, B3, C2, high level of AD pathological change)
3.Lewy body pathology (diffuse neocortical, Braak stage 6)
4. TDP-43 pathology (limbic)
5. Small vessel disease (mild)
6. Cerebral amyloid angiopathy (moderate)
The conclusion begins 'This case shows multiple pathologies.'
The death certificate from the hospital reads:- Parkinsonian Syndrome, Dementia, Small vessel Disease of Brain.
So you can see how difficult it is to actually know for certain what is going on unless one has a brain tissue biopsy. I think even the high tec scans that one can get now are not that accurate either.
Actually, I have come to the conclusion that it really does not matter what the disease is called, there is no cure for any of them. Not stem cell treatment or surgical intervention. The best we can do is to try to alleviate the suffering from each symptom that presents, to try all alternative medications and supplements to try, also, to prolong all positive aspects of life, to give good nourishing food and lots of love and attention, always keeping an eye out for any new treatments that might be developed. I cannot think of anything else to do, except keep on this site!!
Dear Yip
Youve had a lot of good advice. My dear wie was diagnosed with Parkinsons 2.5 y ago, this was changed to PSP by a neurologist about a month ago. This only happened cause I pushed GPs and consultants at our local hospital to get a referral, and pushed GPs to send Expidite letter to get the waiting down from 3-6 months to 6 weeks. Getting the right specialist is key. It can make a difference in that a clear diagnosis helps direct managment in a more focused way. My wife went from independent walking to wheelchair bound in the last year with the real decline in the last 4 months. We can see a lot of signs which have developed over the past year, falls backwards, forgetfulness, loss of concentration, eye gaze, swallowing, aspiration pneumonia (6 of these in 14 months, with one admission currently going on at this moment). We also have recurrent UTI, ca 20 over the last year. I now find that the doctors on the ward seem to be kinder and more focused, now they have a name to put to all the signs and symptoms. What I do find is that the physios and OTs on the ward miss the extreme variability in what little mobility is left. Thus she will get over the pneumonia and start walking a little better with a frame (ca 5-7 m), but that will all be lost when the next infection comes a week or so later after discharge. We jhope for a good week at home.
I believe that MSA has changes in blood pressure so standing up even a bit quickly can cause the person to pass out. CBD is usually noted because it affects one side of the body more than the other. PSP has the main symptom of vertical gaze palsy which is the inability of the eyes to follow a finger up or down a large distance without moving the head. Problem is that there are so many crossovers in these diseases it is difficult to tell which one it is. I'm reminded of Jannet Edmunson whose husband was diagnosed with either CBD or PSA but autopsy at death indicated the opposite disease. She wrote the book "FInding Meaning With Charles" about their experiences with his disease.
My general position on "which disease is it?" is, what does it matter? The symptoms are enough to deal with as is getting the most out of each day. Questions like "What stage is my loved one in?" or "What comes next?" or "What specific disease is it?" are not important, don't change anything, and detract from more important areas to put your mental efforts. Sorry to sound harsh but what would change if you had an exact diagnosis? It wouldn't change the symptoms or the difficulty of caregiving or loving the person.
Jimbo
I think that it may be useful for some people to know that the patient has a progressive neurological disease of some sort and then to be given a list of those diseases which have been named and with symptoms which are generally demonstrated in each case. This may help carers, as it may offer an explanation as to what is going on and the reason for certain behaviours and stages of progression and understanding of the whole episode, especially for those carers who are looking after their loved one at home. I had never heard of any of the diseases except for Alzheimer's before it all started up with Dad. I have to agree with Jimbo, what ever name we give to it there is precious little difference in the way of treatment and care. I am from a general scientific background and I was interested for that reason and it helped me, when I looked up the cell biology and neurochemical mal-functions, to adjust and accept that I could do nothing to effect a cure and neither could any of the consultants. It is for this reason that Dad's bits went for biopsy, to help with research and I have been reassured by the brain bank that this is how his donation will be used and that they were very grateful for such a priceless gift. This has brought me great comfort.
i have PSP as dxd by a good consultant on neuro /movement disorders/.It helped me deal with it and the possible problems for the future all of which are now in place i hope cos i do not want PEG feeding for e.g.
my brain is going to the queens square brain bank in London when the big day arrives so despite their being nothing anyone can do to help me in a sense it is ok
Thank you to every single person from wherever you are in the world for taking the time to reply. It is important to get a knowledge of her symptoms to gauge how long she has left. Her condition has deteriorated rapidly and I feel she does not have long left (I understand there is no cure but really hope treatment will prolong her life).
She now has problems swallowing, breathing and is constantly tired - I genuinely think she has survived this long based on her positive attitude. She laughs as often as possible and makes light of everything (let's be honest, no matter how crap someone's life is, she can look you in the eye and say 'actually it's not that bad!'!
For anyone to live with this condition and to enjoy life more than others deserve credit.
I'm really motivated to make a difference by raising money and working as a volunteer!
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PSP has taken my mum away from me.
Saying hello on behalf of my mum who has PSP and her daughter - primary carer
Goodbye Mum, good riddance PSP
just lost my mum to PSP 
My mum is 70 and has PSP 😢
