Hello thought I would just introduce us. My other half Brian has just this week been diognosed with psp. I am full of hope rather then despair now. He has for the last 2 years been treated foe parkinsons and each time we went to the clinic he had an increase of medication and his symptoms got worse till in the end he was chair bound. After a trip to a&e was referred to a neurologist who did diognosed psp and told us Brian had to come of the sinimet as they make symptoms worse. The hope is that when sinimet is fully withdrawn he will be mobile for a while and we can go back to just me and him for a while. I know it will be a rocky road ahead but I hope we will be able to travel it together in harmony. Thanks for reading this post Jane

10 Replies

  • hi jzygirl

    and welcome to the site

    i have PSP and think your attitude is amazing!

    1 r u married or partners?

    i hav e been with my partner 4 5 years and living together for 2 but it has been v difficult getting him and myself to realise that i am limited in what i can do

    hope you get some help from t he neuro who has dxd him

    lol jill


  • Dear Jzygirl

    As Jill says, welcome to the site, you will learn a lot, share a lot and just simply been overwhelmed by the camaraderie there is on the site.

    But can I just this, when oh when is the medical profession going to start thinking outside the box sometimes. I have lost count of the number of people on this site who were initially diagnosed with Parkinson's or Parkinson's plus only to be told later, and in some cases, years later, that it is PSP or CBD. Sinemet MAY help with Parkinson's but it is useless in PSP, luckily my husbands neurologist was more on the ball than some of them and he was only on the drug for 3 months.

    Can we also all shout loud and clear that in some cases, it is not the falling or loss of balance that appear first, it can be, as in my husbands case, complete and I really do mean complete change in personality. But then looking back, I have to admit that even the family seemed unaware of this.

    Kind regards

    Dorothy t

  • Thank you for the welcome. We have lived together fo 25years )longer then most marriages). Brian is 76 and I'm 54. The neuro was fantastic although the dx is sad news he gave me a light at the end of the tunnel wish it was a long life bulb but thats life I'm afraid. Oh how I could of hugged him. Neuro was up front and said that his mobility will be greatly improved without the pd meds and until he clean we cant fully assess how advanced he is. But everyone thinks he is 3 to 4 years along so we should have a few good years before we need to have outside carers bothering us. At the moment we've got 6weeks of reablement (carers) morning and evening. (Due to side affects of pd meds).

    I am looking at things with hope and more understanding. Jane

  • Hi jzygirl,

    I left a little message before reading this. We have quite a bit in common. I just tuned 55 last month and my guy is 73 and we too have been living together for 10 years-longer than most marriages last in LA-! And I said I was born a jersey girl named Jane. This is especially difficult for us (I think) because we did not expect to be caretakers at this point in our lives (at least I didn't). I have to say that I do not know how the other carers on this site who are close to their 70 something husbands do it. I have always been very youthful & energetic. Actually hyper-ADHD, comes in handy as a carer. If you read old post you will see that we also had the Parkinson's wrong diagnosis as well. It took over 5 years to get a PSP diagnosis, with a few other ones as well. I am concerned about the Sinemet. I felt it was causing rigidity in his spine and tried to wean him off of it. But his balance and stability worsened so back on.

    His mood swings are at an all time high. It is almost impossible to go anywhere without a breakdown of sorts. Like being out with a very overtired and over stimulated, cranky 170 pound toddler. He is on so many mood altering drugs at the present time and none seem to be helping. We are actually having a ceremony and making our union legal in a couple of weeks and though it is going to be just close family and friends I worry if he will be up to it. I hope you have already completed a legal power of attorney for his health. We have had repeated trips to the ER ( after brutal falls) where they have questioned our relationship. Often they think I am his daughter (this disease has taken a toll on him), and he usually goes along with it. When I asked him why, he said it was too difficult explaining who I am to him. Significant other -even near a decade- does not cut it with the medical staff. I am tired of explaining, so when he asked if we could make our commitment legal when his family visits I accepted:)

    So welcome to this site and I so look forward to corresponding with you!

    J from jzy

  • Hi goldcap yes I do wonder how the older people manage I often say that we lucky cos I'm young enough and normally fit enough to cope on my own but when the pd doctor gave him his last increase in meds it totally froze him solid. Saw neuro on monday and he did loads of tests and studied the scan and gave us the dx and he said get off the sinimet because thats what making him solid. I explained to him that I had questioned a couple of timez why he was so much worse after each increase and the pd doctor had said it was because he was under medicated. Jane

  • Hi jzygirl, welcome! Gosh, what breath of fresh air you are! what ever you are on, bottle it and take a little bit each day. Better still, either patent the recipe and make a fortune, or just let us know, so we too can have your attitude!

    Please, please stay on this site, we need you! You are right, this is a very rocky road, that we all have to travel and some of the bumps along the way, really take their toll! So, we all rely on each other to pick us up, dust us down and sent on our way! Having a positive person will really help the cause.

    We all use this page to ask for advise, rant our angry, a shoulder to cry on and share any thing we think will help anyone else. Please do the same, you will need to do all these things, we are all here for you!

    Lots of love


  • hi izygirl

    i agree with wha the others have said = it is v difficult living with this PSP but what the heck with a new person like u on the site it si bearabel

    stay strong and plz stay on the sit e

    lol Jill


  • Dont worry I will be staying on the site. At the moment we are having a giggle cos once again there is a spanner in the works. Brian has always had high blood pressure but with each increase in pd meds it went down so they had to withdraw the blood pressure meds all good there but now we having to withdraw the pd meds we have got to take the bp daily to make sure it doesn't rise. Don't know about being a carer feel more like a mechanic collecting spanners. Its nice to know that once everything is settled down and we know up from there is people that have the knowledge that I don't have. Jane

  • Jane have not been on the site much lately but saw your name and could not help smiling.

    i am originally a jzygirl named Jane!

  • Hi jzygirl, welcome to the site. I echo everything everyone else has said. It's brilliant you are so positive. There will be off days but I'm sure you will be able to find something positive even when others around you can't. I hope coming off the meds does help. When you look at the side effects of meds lots of them list the symptoms of PSP so I have no idea how you tell what is what....just trial and error I think.

    Best wishes to you both and keep posting,

    Nanna B

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