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Hi everyone , my husband has recently been diagnosed with PSP after 8 years of misdiagnosis. He has his initial appointment with Dr Massey at the end of May. Are any of you under him? What should I expect from this appointment? Sorry for the questions just trying to gather as much info as I possibly can . I have downloaded all the resource material and read every word.

20 Replies

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  • Hi, Carrie. Welcome. It's very common, as I'm sure you know, for this diagnosis to come late. I learned almost everything I know from this site, and we an an excellent neurologist in Boston, here in the US. You might ask, if you are not sure, what type of PSP your husband has. If he has been treated with Parkinson's drugs, what help or harm may be in continuing them. If swallowing is an issue, will you consider PEG feeding?

    Sorry not to be of help. With PSP it's all about symptom management, and every patient is affected differently. As you have been dealing with this for so long already, your issues are probably well established. Dr. Massey has been mentioned here. I hope someone who knows him and can advise you properly sees your post. In the meantime, ask anything you like. That's what we are here for. I have been helped immeasurably by the folks here.

    Peace, Easterncedar

  • Thank you so much for answering. I did not know there were different types of PSP . Still have a lot to learn .

  • I just checked Massey on the search field, and there was just one hit, but there was a bit of conversation about a support group, too. May be in your area? Worth looking at, perhaps? Battery's going, so me too for now!

  • Hi Carrie

    Just to say welcome.

    I don't know Dr Massey. I hope she/he is good.

    Wishing you the best

    Warmly

    Kevin and Liz

  • Thank you so much .

  • I also don't know the doctor, where are you? Xxxx

  • Near Winchester Uk

  • We are in Hertfordshire, we go into London and see Proffesor Morris, he is lovely xxxx

  • Thank you maybe a name to keep in case Dr Massey does not fit the bill so to speak xx

  • I can't understand why it takes a Doctor to diagnosis PSP so long, first thing my brothers Neuroulgest did was do a MRI of the brain there was shrinking of certain parts of the brain plus they can tell a lot with the eyes and other symptoms that go along with this dreaded PSP sorry it took so long for your husband and you to find out. Stay strong thinking of you. Nettie

  • Thank you all mri's showed nothing apparently it was only when he had a DatScan that showed so much reduced dopamine. But we did have doctors and Consultants that kept saying nothing wrong and would only ask my husband questions and then took his word .

  • Hi Carrie over the last eight years does he have a lot of symptoms? PSP is so weird everyone is so different some have all the symptoms and some only a few of them.

  • He started as having extreme nightmares , he also would throw anything and everything away we had to keep going through bins to claim things back. His walking started being a problem whereby he could not walk on his own. He has argued his way that 'he is fine' he had very little memory and absolutely no spacial awareness. I have now power of attorney for him for both health an finance. His bank had said he has locked himself out of his online account 55 times in the last 10 months. He now has a tremor in his right hand, he cannot walk around the house without holding onto door frames and stairs are a no no. He has absolutely no awareness of his condition or his abilities or lack of .

  • Carrie,

    Welcome. It's an unfortunate but necessary place that I hope will help the both of you. I'm in the U.S. so I don't know yout doctor. Be prepared for evasive or non-answers because your doc may be less familiar with the disease than you are.

    Ask as many questions as you need. Be polite but assertive. Don't let him blow off the hard issues. Have your questions written down if possible, and make sure the doc doesn't talk over your head by using big words you don't comprehend. There are no right questions, very few​ definitive answers. Just be sure you are treated with respect and dignity.

    Best of luck to the both of you. With kindest regards, I remain,

    Steve

  • We live in Hampshire and have been supported by Dr Massey, an amazing consultant, an expert in PSP. I can assure you that you will find the consultation and further appointments very helpful.

    Wishing you both all the best.

  • Further to my earlier post. .......

    We go to a PSP support group in Wherwell Village Hall, North Hampshire, 20 minutes drive from Winchester. The meetings are every month on a Friday at 11:00 to 1:00. At our next meeting on Friday 12th May Dr Luke Massey will be attending. Just check the PSP website for confirmation of dates.

    You asked what to expect at your first consultation with Dr Massey. We had to share historical data, so it will be helpful if you have a timeline and dates of symptoms. Also a list of current and past medication. Think about what you both want to get out of the meeting, there is no cure for PSP but Dr Massey will advise you on symptom management. We left our first appointment with 5 recommendations and on our second appointment 3 months later they had all been met!

    Good luck to you both with the consultation and we might see you at our PSP support group.

  • Thank you yes I will be attending on 12th May , thought it would be helpful before the appointment with him at the end of May x

  • Brilliant, look forward to seeing you there. Lots of friendly faces, tea and cake and most months attended by a health professional.

  • I'm envious! Please if you can tell us a little about the meeting after. Thanks!

  • Hello Carrie, we live in Cumbria and see a neurologist in Blackpool. I would also like to attend a PSP support group but I don't believe there are any in my area. My husband was only diagnosed 3 months ago after being told he had Parkinson's in 2011.

    Wishing you both the very best with your appointment and I hope you get help and the answers you need.

    Lisa

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