A little bit lost.

[LeighWoodward]

Hi all, sorry to see everyone's continual battles against such an awful and unfair illness.

My dad's been ok the last few months, had 'parkinsons' for about 10 years and diagnosed with 'probable psp' about 6 months ago. Sadly he has very recently taken a dip in his abilities to communicate with us, his wife and even the grandkids. He has become a lot more withdrawn and incapable of moving his body, head, talking etc. Just seems out of it all the time. I can't help Feeling its medication related. They upped his parkinsons medicine recently and I fear that may not be helping.

My question, who can we go and see to get an independent review of his condition and medication. Ie who is the best person in the field, private or NHS. I hate the feeling that we could be doing more but just don't know what.

He's left alone with my mum for long periods, no one seems interested unless mum phones and asks. They already have to pay for a physio, but get continual guesses from supposed parkinsons doctors who always feel to us like it's a bit finger in the air. Other than that they're just left to their own devices, not much of a life for either of them at all.

I just want to be told he's on the best combination of medicine and he is where he is as this is his condition. And not he could be so much better if he stopped taking x y and z.

I remember reading in here once that parkinsons medicines may have a detrimental effect on him, but who do we speak to that will listen to this and help us get him reviewed. My dad is such a strong man, he battles hard, and we usually get him back for 2 or 3 hours a day, but lately he's been jobber in nonsense, have checked for water and chest infections, all negative, but we don't even get these good patches any more. He's just out of it all day, and I just don't think it's the illness.

I could be wrong, but would appreciate anyone's guidance on what more we can do. My mums phoning the psp association today also and is awaiting a call back. But thought I would ask here.

Thanks all and sorry once again for all your heartache.

[Kevin_1]

Hello Leigh

You describe very accurately the stage my Liz is at.

The 'withdrawn' part (as well as the other symptoms you describe) may be part of the deterioration of the brain. Not so much withdrawn, but funtioning far less well.

Yes, I too have heard that Parkinson's meds. ar contra indicated, but I have never seen any clinical data on this.

Q. Do you have a tertiary neurologist or a secondary one? The expertise in the NHS is tiered. Your local hospital neurologist might be more of a generalist who may or may not be very experienced with PSP. If that is the case ask for an urgent referral to a 'Tertiary Neurologist' they will know exactly what you mean. You do have a legal right to a second opinion.

If you are already seeing a tertiary neurologist. e.g. they are in a specialist unit such as one of the big centres of excellence - Then telephone their secretary and ask for an appointment for a telephone consultation. This is standard practice.

I do hope this helps a little.

It must be miserable for you all right now.

Best to you

Kevin

PS - it could be the meds. to some degree - Only a specialist will know.

Please come back to us all if you find out any more on Parkinson's meds. and PSP.

[Kevin_1]

High again Leigh

Parkinson' drugs and PSP discussed here (it seems to be usual practice in the States at least):

psp.org/wp-content/uploads/...

You might want to look up side effects of the one he is on.

Best to you both

Kevin

[LeighWoodward]

I will do that Kevin thanks, will pass that on to mum. Yes will let you know if we find out anymore about pills etc. It is very miserable Kevin, mum and dad celebrated their 50th golden wedding anniversary on Friday, we took them on a canal cruise with all the grand kids etc but dad just couldn't interact. Does his very best but just can't. It's awful.

Such a crying shame as given how active mum is they woukd be having a whale of a time now with all the little ones if he wasn't ill like Thai. It really is shite.

[raincitygirl]

Hello Leigh: I am no help at all: I don't know the UK health system. Just wanted to say "Welcome" and "Good Luck" and please don't hesitate to pursue any angle you can to get more thorough answers or at least opinions, on your dad's status. No health professional can say, given the oath they've taken, that you CAN'T pursue more information to make his life as good as possible.

Warmly,

Anne G.

[Teeker]

Hi Leigh, welcome to the family. My husband was treated for Parkinson's for 7years during which time he had lots of falls, excessive tiredness,confusion and did not respond to the medications. He was rediagnosed 18 months ago with PSP and was told that the Parkinson's medications were causing his symptoms. They were discontinued and there were no more falls or confusion and was more alert and less tired. Now that PSP has brought its own set of problems we try to cope as they rear their nasty heads. You need to see a neurologist because it looks like your dad is having the same response to the medications he is on. I can empathize with you and hope that your dad's.

[LeighWoodward in reply to Teeker]

Hi Teeter, thanks for the reply. Do you mind me asking what medication he was on, do you remember?

It's just so frustrating. We are now chasing for a neurologist. Will update once we know. Thanks ks a lot. Leigh.

[Teeker]

Medications are reviewed. Sending hugs and best of luck that your dad will receive the treatment he needs. You are with a wonderful group of people who are going through the same hellish disease and offer the best advice. Your mum must be so proud to have your support. Hoping that your dad gets the help he needs.

Warm regards

Esther(teeker)

[LeighWoodward in reply to Teeker]

Thanks. She's just phoned the doctor and he's coming out this morning hopefully to do a referral to a neurologist. Watch this space. Thanks for all the help. L

[Teeker]

Hi Leigh,

My husband was on.. Ropinerole, Madopar and Amantadine.

Esther(teeker)x