my husband hs psp but was first diagnosed with parkinsons how can you tell the difference

[ronh]

he falls a lot dribbles and mumbles but not all the time

[jillannf6]

hii too have PSP

and was diagnosed in dec 2010

i am 66

1 of the main ways of confirmign psp i sthat the car-levadopa drugs do not work- i tried that and amantadien and neither worked for me

i have had rubbish handwritign for 5 years; frequentlyh falll (fwds not backwards) have problems with my eye s- closing and not blinking so theh=y get vdry

and soem problems iwth lookgin down

cannto co-ordinate - do up buttons zips

cannnot swim anyh more as hand sand legs do not work together

cnnot marchon spot

s(all physical problems)

speech probs - i wea rhearign aids but myhk speech has become faster and quieter

typign now v dyslexic

see my blog about me

IT IS WELL WORTH JOINIGN THe psp assoc as thye will supplhy you wirh loads fo info

then there r the emotional probs too - i have becoem v weepy over nothing

(not depression)

and more childlike or childish and self centred

lol JIll

[ronh in reply to jillannf6]

Thank you Jill, I can see it took a lot of effort to write to me. Yes my husband does have a lot of the symptons you mention. His speech is now more of a mumble and very fast, then he gets angry with me asking for a repeat. One thing I have noticed is that humane contact is very important so we have lots of cuddles when I go to the NH and when I leave which seems to comfort him, although he hates me leaving.

[ashav in reply to jillannf6]

Hi Jill,

I have just one thing to say to you every time i read your replies to people. You are an absolutely amazing person. God bless you and may this all get easier for you. Wish everyone gets your positive influence and fighting spirit.

Ash

[dllera]

Hi there - the major differences between PSP and Parkinson's is generally the eyes (gait palsy in PSP), response to Parkinson medications (very minimal relief of symptoms for PSP), and the presence or non-presecne of tremors (generally PSP doesn't have tremors). PSP and Parkinson's effect different areas of the brain put "mimic" each other in the early stages which is why PSP is so often misdiagonsed for the first several years.

[ronh]

Thnak you dilera, I have noticed many of the things you mention that is why I queried if he had parkinsons because none of the others in the parkinsons group meetings seem to have the same symptoms. Though I must admit that Ron does have a tremor now and then.

[klimmy04]

Hi

My husband was diagnosed with Parkinsons in 2006 (started with a tremor); I noticed that he had problems with his eyes from about 3 years ago, mainly sensitivity to bright lights and general outdoor lights, so much so that this year we used to have to have the curtains closed in the house, and when trying to get him outside he wore really dark wrap around sunglasses; I also felt the Parkinson's meds he was on really weren't working/making any difference anymore.

His falls were getting worse, and becoming daily, and his general mobility too, meant he couldn't use his walking frame too good, so I could see he was going to be wheelchair dependent.

Then I read an article in January about the statistics of how many people are diagnosed with Parkinsons, when really it could be something else such as PSP; MSA. So decided to do some research in to PSP symptoms, and was horrified to find that he had many of the PSP symptoms. Then in April this year when we went to see the Neurologist I queried this, and he did some memory tests, and said yes Andrew had got PSP.

Unfortunately for Andrew he developed a problem with his breathing, and although fought and recovered from pneumonia twice in just 3 months, this affected his lungs greatly. He eventually lost his battle against this vile, cruel, Parkinsons, PSP, on 30 July 2012, having just had his 50th birthday.

However since he passed away so suddenly (and it wasn't a respiratory arrest as I had been forewarned to expect as he was going to be coming home so I could nurse him at home, as he needed 24 hour care and neither of us wanted him to go in to a nursing home because of his young age) I have to wait until the results of his comprehensive post-mortem before I find out what did cause him to leave me.

Sorry, I feel as though I've rambled on, but in a nutshell, see if you can get a list of symptoms off the internet, and then highlight what you think your husband is experiencing/going through and then get an appointment with the Neurologist, so you can discuss it through with him/her.

My best wishes to you.

Fiona

[ronh in reply to klimmy04]

I did reply but it seemns to have been lost please put it back so fiona can read it Jo

[springbank]

My late husband was diagnosed with CBD (Cortico Basal Degeneration) same as PSP but affects one side more than the other. He had Parkinsons shaking one week in four. He took 5ea 25/100mg Co-Careldopa daily which was upped to 8ea daily when Parkinson shaking started. Nightly he had 1ea Stilnoct 10mg to help with getting to sleep. In addition when the shaking really bad, would take 1 or 2 ea Diazapam 2mg. This helped to get him to sleep and alleviate the shaking. The shaking would start mild and over a seven day period build to a crescendo then suddenly stop. The tablet dose was then reduced to normal. Please be aware that the additional sedatives can last through the morning and person may be a little groggy. But a balance has to be struck between the awfullness of the shaking and the ability to get a slightly more peaceful sleep. A lot of symptoms are individual so it is a case of trial and error.

[springbank]

I agree with everything said by "Klimmy04. If you get the large folder from the PSP assoc it will enlighten you. It is excellent to help with the unknown. Anyone who is carer has to find out as time passes how to cope in their own way with PSP/CBD.

[ronh in reply to springbank]

I agree, when the diagnosis is made by the nuerologist it is a bewildering to know how to cope and to accept, such a big responsiblity, But we have a nuerological nurse assigned to our area by the Fedral Government so it hs been a blessing for all concerned. In answering some of these replies can be depressing but on the other hand good to know and read. thank you jo

[kpsmail]

Iwas diagnosed as having azmir firr Iwantest by nurologist late

[jimandsharynp]

Top neurologist at university hospital Florida University said that early falls is an indication of PSP. Parkinson's usually doesn't have early falls GENERALLY. Downward gaze and sometimes horizontal gaze is mostly unique to PSP. In my wife balance issues and early falls pointed to PSP and later eye gaze just confirmed it. Many of the issues with Parkinson's also appear in PSP (small writing,low voice level, speech issues, etc.). This is why missed diagnosis happens with PSP as Parkinson's. Think back about any falls in the past, before you thought something was going on. PSP people can't usually follow your finger downward without moving their head where normal people can. Or side to side.

Jimbo

[jimandsharynp]

There are PSP groups in the USA and UK and Austrailia. Monitor them all as they all have great information.

Jimbo

[jimandsharynp]

I forgot to mention that dopamine drugs either don't work for PSP or work for only a short time or limited in effects. This is another indicator as someone else pointed out.

Jimbo

[SheilaN]

Hi, following a raft of inconclusive tests which found general deterioration of the central nervous system and spinal chord but nothing to put a name to, another neurologist identified PSP following a simple test in which my husband could not look down without moving his head. Then all the other symptoms fell (pardon the pun) into place. Googling 'The four stages of PSP' gives a very clear picture of the condition and what to expect. But it seems that no two PSP sufferers experience the same syptoms at the same time so the stage boundaries are blurred. Unfortunately however, the outcome is inevitible.

Take care

SheilaN

[kryste]

Parkinsons is both sides of the body PSP is only one side effected is one way.

hugs kryste