This is my first post, not just on this forum, but on any forum, ever.. I've been following the PSP community posts for ages because I'm convinced that my husband has PSP, although the neurologists won't confirm it. They continue to say that it's "probable Idiopathic Parkinsons", but that it "might" be PSP. From the research that I've done, my husband has such typical PSP symptoms - and more almost every day. Since he first got ill two years ago, his balance has become terrible (falls several times a day, mainly backwards), his mental ability is about a quarter of what it was, his personality has totally changed (although in his case for the better as he used to be really short-tempered). There are lots of other symptoms too, but his eye movement seems pretty good, which is what is preventing the neurologist from diagosing PSP.
Do the eye movment problems often happen later in the disease, or is it possible to have PSP without these problems?
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Kris539
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Although having a definitive diagnosis does seem like progress of a kind, since there's really no treatment for psp there isn't much practical effect. As Satt2015 has noted, if Parkinson's meds don't work, that supports a psp diagnosis.
It does sound like your husband could have psp. The backwards falls are typical, as you know. I believe the fixed eye symptom may appear late or not at all, like every other common symptom. Everyone is affected uniquely. Frustrating, right? Sorry not to have a solid answer.
You are welcome here, no matter what. I hope you will stay connected. Nice looking puppy you have there. What kind?
My husband was diagnosed with psp but does not have the eye downward gaze or otherproblems so often mentioned. He has most other mentioned symptoms and the Parkinson's meds did nothing for him. I think it is as others say , no two cases are alike. Our neurologist said diagnosis could only be proven in death but for any holiday insurance purposes or similar he was happy to state it's psp. Hope this helps.x
I find myself in the same situation as your hubby i was diagnosed about two years ago with psp when my neuro found a sight hesitation in downward glaze my other symptoms are illegible writing and a fall about 2-3 times a day ( most of these are forward except wean i move backward) These are the typical symptoms of 'pure akinesia with fog' along with no reaction to the normal Parkinsons' drugs . this is a type of psp but not as nasty as the true psp it maybe that your hubby has this condition do google this , because not a lot is known about these atypical parkinsonisms
but like me i tend to be ignored by the neurologist because they can't categorize you.
Hi Chris, this sounds like your circumstance is exactly what I experienced. First neurologist placated him since his cognitive was affected which even after my comments did not change their attitude towards him, extremely frustrating. He had a DaTtscan which showed lose of dopamine on both sides of brain so they went with Parkinson's. I always felt he had PSP because of the backward falls, apathy, masked face, lack of eye blinking, double vision, no change on Sinemet. Even after I changed Drs. it took 4 years before their diagnosis was PSP and it took the downward and upward eye movements to make that change even though he has suffered with double vision for 3 years and needed 2 different eyeglasses with prisms. You know your husband better than any Dr. so go with your gut and hopefully in the near future he will get a proper diagnosis. Hang in there. Sending a big hug and good feelings! Jo
The supernuclear in PSP is the area of the brain where eye control is controlled. M was diagnosed after visit to local Specsavers in 2011, he spotted some problem with eye movement which he said could indicate a problem called Steele Richardson it took a year before eye hospital consultant agreed and a further 9 months for a neurologist to agree. The wheels of Welsh NHS run slow. Has your husband been to an optician recently? If not arrange an appointment explain you are concerned about lack of blink and eye movement especially loss of down eye movement. If his observations record these they will refer him to GP for eye hospital. Loss of eye control is not a Parkinson symptom but is main PSP one. Take PSPA red card with main PSP symptoms to your GP. Hopefully it will get you a diagnosis even if not one you and your husband will like as PSP is a life sentence and a rocky road.
I don't know about the UK, but the US optician may only be able to prescribe glasses and not have background to see slight but real problems. Ours said B was fine since he could read the writing on the wall , as it were....soon after, his gaze was tested and PSP diagnosis made clear.
In UK opticians are encouraged to look out for abnormalities and inform your GP, it is different within UK some opticians only interested in specs and contact lenses but others actually interested in clients' health. I have no experience in US but if you asked if there was any blink or eye movement issues I would have thought the opticians professional pride would kick in.
Hope B and you are enjoying the summer not too hot and humid
Thanks Tim good info! The last few days have been cool if 89 F (30C?) is cool but better yet , not too much rain....The saying really is true:
"It aint the heat, it's the humidity"
That will change in the next few days where it will be so humid my hands will stick to the keys of the computer. So if my posts start stuttering, It's not just me being a babbling idiot.... well maybe it is ...hahahahh
PSP is notoriously difficult to diagnose as some symptoms are similar to other neurological illnesses. We had Dementia, Lewey bodies dementia, Parkinsonism, MSA, CBD all considered over a period of 4 years before a 3rd brain scan showed what the neurologist called `the Hummingbird syndrome` which helped him to confirm PSP. I also pursued the investigation of NPH (Normal Pressure Hydrocephalus) which also mimics a lot of the symptoms of PSP but, crucially, can be treated by a lumbar drain in some cases. Until you get a different diagnosis, please ask for a NPH test.
P now has developed notable eye problems and finds it difficult to read, blink and focus. His eyes water a lot too.
Kris539, My husband has had the disease for about 4 years. He was diagnosed at the Mayo clinic in Jacksonville, Fla. His eye problems did not start until about a month ago. The neurologist had made him an appointment with the MSA specialist because he had not started the eyes looking up like all PSP patients do. The MSA doctor was appointments are backed up to September. When he started to have eye problems the PSP doctor wants him to come back in for another assessment. I am sure he has PSP now.
He had the falls at first like your husband. He can barely talk, walk, or do anything that is multi tasking. He was a nuclear operator before and programmed computers. Now he can't even open his email. Last week he got upset with me, and he wrote on a piece of paper "I'm dying". He cannot write very well ether. I have really had to read a lot on the computer to learn about PSP. The group here has been great source of information and stress release. God bless.
Hey Kris. Whether or not its PSP is almost a mute point.....all Parkinsonism is progressive. If he has not responded to Levodopa I fear there is nothing much more in the medical field you can do . Because at least you have a diagnosis, you may be able to get medical care through insurance or whatever your gov't provides disabled individuals. The not knowing is horrible I must admit, but the knowing and subsequent new life is no better. You might take him to acupuncture and chiropractors to see if they can help....you might check online or some other posts here for some remedies or relief. Mind0verMonkey, an individual who used to write here had some good ideas...he may have made a few ppl uncomfortable but I think he was just searching for answers....like the rest of us.
By the way neuro's know as much as you do...infact in a year..(.maybe a month you look young and full of energy) I bet you will know more than your neuro about this horrid disorder. Don't give up on you or your husband. You are his greatest advocate!
From a n upset stomach to an upset balance control , your husband needs you . and you need you. You are your own best advocate. Take care of yourself...believe me taking care of yourself is so IMPORTANT! Not just physically but emotionally and spiritually! You know how to eat, you know how to cry and laugh ; remember also to pray and depend on a higher power....I say this feeling like a hypocrite since I have been very sick spiritually...so forgive me for my apparent hypocrisy . Anyway, I will leave you with words of I hope comfort.
Good luck Kris
AVB
I will instruct and teach the in the way which thou shalt go: I will guide the with mine eye. Psalm 32:8
If any of you lack wisdom, let him ask of God, who gives to all men liberally without reproach; and it shall be given to him...
James 1:5
Casting all your care upon Him ; for he careth for you
Funnily enough my husbands eyes weren't that bad, but he became very lethargic, lost interest I got everything, we got Lewys Bodies diagnosis first then Frontal temporal lobe and finally PSP. The falls backwards are a sign. eyes so become light sensitive. The neurolgist should be able to diagnose. I always felt that he lost a whole layer off the top of his brain. No real thought for anyone else. Conversation became limited and this all before he became bad. Try and make your house sensitive to falls. We had so many breakages, sometimes Dale broke too!!! We noticed about a Year in, handwriting difficulties , then about 4 years ago, he started to lose his voice. If you can try and keep him exercising. Need strength particularly in the upper body to help get him up when he falls. Give him lots of hugs, they should help for you too. It's a long hard road, sorry. But humour music, have friends over make the most of the remainder of his life, if you can
Thank you all so much for your comments and answers. I know that at the end of the day the name of the disease doesn't make any difference to the treatment, but its very frustrating telling people he has Parkinsons when his symptoms are so different from most peoples idea of PD.
He has no improvement with Sinemet. We went to an optician just last week and he did say that George was not blinking a much as normal, but theories his vision seemed OK.
I think this site is amazing, and the people on it are an inspiration. It is also very scary though, to learn about what is probably coming in the future. I honestly don't know if I will be able to cope. Things are difficult enough now. I'm worried also about the effect his illness is having on my children. My daughter is 23 and just graduating from university. My son is just 16 and still living at home. I feel the extra pressure of protecting them from this horrible disease
My dog is a cocker spaniel. Sometimes I think he keeps me sane!
Hi, my husband was diagnosed over three years ago now. His eyes at the time, were the big give away. He was staring and a bit slow in movement, with them. His actual eye sight was fine. Even now, although everything else has giving up the ghost, can't walk or communicate anymore, his eye movement is still more or less the same, can still read, when his brain lets him.
As for you not coping in the future, well I promise, we have ALL felt the same as you. I had loads of red lines, that I KNEW I would not be able to cross. Each day, I pass over another, with out even noticing they are there! It's just doing things that need to be done. I AM the worst at keeping my temper, I do find life extremely frustrating. Never use to be like that, but learning to accept, this is the way I feel and I can't afford to bottle up any negitative thoughts. S just has to put up with this, not nice for him, but at the end of the day, he wants to stay at home and I hope realises, this is a small price to pay!!! He can't scream and shout anymore, so I do it for both of us!!!
Keep the dog, I got a puppy last year, great fun, while they were fighting, who could "pee" on the floor the most, but, the loving bundle of mischief, that he has grown into, as got me through some pretty rough times.
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