I wonder if anyone can please help me with this. My husband who is still ' query psp' had a dat scan. ( investigations being done at Queens square, London with Prof Morris) The results have come back as ' Normal' . It then says ' I think that our understanding of DAT scan changes in patients with early psp- like syndromes is uncertain.
So does this mean that he could still have psp? Can you actually have psp with a normal dat scan?
Thank you.
When my husband’s results of a DAT scan were explained we were told that he had a degenerative brain disorder that was probably PSP. In 2010 we were told that PSP could not be positively diagnosed until the brain was examined after death, but once Parkinson’s had been ruled out, PSP was the probable condition. Scans have probably improved since 2010 so I suggest you ask your husband’s doctor who would have received the same letter as you.
Best wishes.
XxxX
Hi Karibu
We have seen two Neorology consultants both specialising in PSP. We had to change hospital which is the reason for two and we are lucky to live near London. Both commented that the walking gait and slow circades - eye movement ( I have probably spelt that incorrectly). were the diagnostic give aways at that early stage. The seconf consultant wanted a scan and I suggested a high tech. one (being ex NHS I am cheeky) and he said oh no, that won't show me what I want and he said an old fashioned MRA was the thing.
Now this was almost five years ago, and things are moving quickly. So this might be out of date. However both were very keen on the eye movement results which were done on high tech. computer controlled revolving chair in a dark room and weird camera goggles etc.
I don't know if this helps.
Best to you
Kevin
Hi we also see proffesor Morris at queens square, the did a scan on my husband and said he definitely had psp, he is a wonderful doctor, just email him asking for him to explain things to you. Yvonne. My husband was diagnosed in 2014 again in 2015 he is in a wheelchair, coughing and choking all the time. Xxxx
Thanks Kevin. My husband has a slightly broad based gait and slow vertical saccades. I'm not really sure if the dat scan was worth having. It seems to neither confirm whether you have or haven't got psp.
He had an mri scan and it shows mild dysfunction of the frontal lobe and temporal areas.
Thank you for your help
Thank you Yvonneand George.
We go back to see Prof Morris on the 18th of this month. So I will wait until then to ask him to explain. I think we will finally get a diagnosis then.
Prof Morris's team have been brilliant. My husband spent 5 days there in september. They were so thorough.
Lots of love to you x
Prof Morris was the one who said MRI Scan to us. You are under a wonderfully caring Neurologist who just happens to be in the top few worldwide.
I wish you both well.
Hi Kevin,fairly new to site. First consultant diagnosed CBD back in June. Second one last month said he wasn’t sure so is referring me for dat scan to rule out Parkinsons. I am getting more terrified by the day with all the waiting. Who is Prof Morris ? Is he private? Or just your local hospital consultant. We are not near London so there would be substantial costs involved. It’s knowing what questions to ask as the two I have seen have not been very forthcoming with info.
Hi Aprilfool20
I am so sorry you are having to face this uncertainty.
Prof. Morris is a specialist in PSP/CBD based at University College London Hospital. It's NHS, but he has a research department and is one of the big names. There are others dotted around the UK. Having said all of that most of the treatment is either piratical care or alleviating symptoms such as dry mouth etc and its not really that complex as far as I can tell.
What we did was asked for a referral to a tertiary Neurologist.
G.P. = Primary Care
Hospital and specialist units, including neurology, is Secondary level.
And, the secondary level can bump cases up to tertiary level which is like the experts for the experts.
Your well within your rights to request qa referral to tertiary level and if your neurologist will understand that language.
Tertiary level have access to all sorts of specialist diagnostic resources that you won't have locally unless you are lucky enough to have a tertiary unit nearby. You will have a tertiary neurology team covering your area.
Do come back to me or PM me if you want clarification.
I do wish you the best of luck in all of this.
Warmly
Kevin
Thank you for this,Kevin.just one thing. Sorry to be ignorant but do I ask the consultant next time I see him( probably May after the dat scan) about a tertiary referral? No one I’ve seen has been that forthcoming with info. Have joined the local PSP/cbd group so hopefully will get more info about how to progress further. Very glad this site exists.
Hi Aprilfool20
No, not ignorance per se, you are just on the long learning curve we are all on.
There is so much information that is not in the books, pamphlets and which the professionals don't think we need to be bothered with.
The PSP Association is superb for high quality information as is the Age Concern website. However I have learned most from others here. There is a huge amount of experience here of many different kinds. Together we make a pretty useful data bank - with loads of caring too!
You could write to the Consultant now. May is too long to be kept on tenter hooks and you could make that point too in the letter.
No question is ever too small for the folk here. I would be lost without them.
Best to you
Kevin
Adding
Every patient has an enshrined right to ask for a second opinion in the NHS. Having seen it happen many times from the inside there is never offence or rancour from the treating team or Dr. The referral is simply made.
My dad's MRI was read as normal for 82 yrs old, but He has bad shuffling gait; falls all the time; has no balance; and has the eye movement thing which the neurologist said was the give away for PSP. My dad is not choking yet though. He is falling alot though.
Hi
I always try to make my comments positive on the forum, but sadly the two dat scans rog had were negative, i think the do them to rule out other possibilities in the brain.
This limbo you are in is a nightmare, a confirmed diagnosis whenever you receive it is a bombshell but opens doors to appropriate agencies .
Keep warm
Julie
Thanks Julie.You're right. Being in limbo is so frustrating. We've been waiting since March of this year. But after a week at Queens Square in September, we are now closer to getting the diagnosis. We go back to london on dec 18th for a review. I am certain it'll be psp. Phil has slow vertical saccades, slightly wide based gait and reduced arm swing. It will be the worst christmas present ever if diagnosed. I will let you all know the outcome.
Much love to you xxx
Hi Karibu !
I enclose my experience in case it can inspire some positive actions to you. In few words these are my experiences on PSP disease hoping they will be useful :
If the doctors agree that there is suspicion of a parkinsonian neurological disease (like PSP, CBD, Parkinson. etc.), I suggest to start an intensive and systematic gymnastic program as well as walking, up and down stairs, speech therapy, etc. as son as posible, to slow down eventual muscle dysfunction.
Bearing in mind that the Parkinsonian patient become significantly more fatigued than a person not sick for the same activities (the more the more advanced the disease), which requires more frequent rest periods.
2017-12-09
PSP is a disease without pharmacological treatment yet. The only thing you can do is counteract the symptoms…....but, you can achieve a reasonable quality of life, even interesting despite how hard this disease is for everyone.
My wife suffers from PSP. The first specific symptoms (difficulty speaking as if she had a stone in his mouth and a slight tremor in the ring finger) will be presented in March 2012. . The definitive diagnosis was in June 2015 (Difficulty in eye movements which was the specific symptom that added to the difficulty in speech and walking instability confirmed the PSP diagnosis).
Dat scan between 2012 and 2015 did not confirm the suspicions about Parkinson's, PSP, CBE, etc.
The non-strictly medical parameters that the main caregiver must manage:
1) Falls (From 2008 to 2016 my wife has fallen 11 times some of them serious. From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two serious falls that nobody related to PSP).
A fall with serious consequences is usually accompanied by an enhancement of the symptoms and a decrease in the quality of life.
To avoid falls, different techniques can be used: transfer techniques, seat belt, wheelchairs with anti-bedsores cushion (our anti-bedsores cushion is: JAY from Sunrise Medical Ltd brand.), to adapt the bathroom, handrails on each side of the bed, articulated bed, plastic wheelchair (type ETAC) special for hygiene and shower, etc.
She has regularly used a wheelchair since June 2016 (Four years after first symptom). The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car (aluminum wheelchair is: Ergo Lite 2 from KARMA brand).
2) Prevent cold and flu (vaccine could be advisable) to avoid common pneumonia (pneumococo).
3) Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia” (with falls this is another very important risk). Add thickeners to drinks (water, Aquarius orange or lemon); to drink use a plastic straw and try he/she drink with the chin as near as possible to the chest. Relatively doughy food and solids in small pieces. Mediterranean diet insisting on fruits (peeled fruit) and vegetables. Fruit compotes in small pieces or passed by mini-pymer. Ice cream are well tolerated.
4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): At least go up and down 50 steps (Odd days), walk 200-300 m (even days), speech therapy exercises and exercises ocular muscles. After that he needs to rest at least 30 '.
To maintain the muscles of the face we have seen that laughter and good hydration (moisturizers and liquids via oral) gives good results.
Without any scientific basis, only observation of four nearby neurological diseases cases, I have the impression that a specific program of intense gymnastics can slow down the disease in an important way and is more effective the earlier the disease is detected.
5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended.
The difficulty to follow the rhythm of a normal conversation, being treated as a child or being the object of attention for his illness and not for the person who is locked inside that jail that is the PSP, produces feelings of frustration and humiliation. You have to try to avoid those situations but keep attending social events because although usually resisting to get out of the routine at the end the person wiyh PSP have normally very good times.
In the event that the food is difficult to handle (spaghetti, salad, etc.) or it is a meal in a restaurant with people who are NOT from the family (former colleagues of university, etc.) and where the restaurant marks the rhythm when serving the meals, it is very likely that the person with PSP needs help to eat and thus not delay the rest too much. This can create feelings of humiliation. In the future we will try to select the type of food and attend meals in which the rhythm of the meals is very flexible.
6) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.
We have had some episodes of constipation that have been corrected by applying an intensive mediterranean diet in fruits and vegetables helped by the drug "Duphalac".
Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.
7) Communication: There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one of the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she points out. Until now it is the best system.
To say yes or not she uses head movements.
We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.
Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.
Various medications have been tried for pain episodes (falls). There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil in capsules and if the pain is acute Nolotil in glass ampoules. All under medical supervision.
Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.
We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ are a big help.
Releasing the caregiver and allowing him/her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at the health of the main caregiver is and his/her medical history.
The bottom line is that jobs and occupations of the main caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.
From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.
I hope and I wish these notes are useful.
Hugs and courage.
Luis
Thank you Luis. Very informative. Lots to take into account.
Should get diagnosis on dec 18th. I shall take note of all you have explained
Thank you
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