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Medications and PD

I have a sought of PD being Progressive Super Nuclear Palsy or PSP.. there are very few that seem to suffer from this most debilitating disease... i would love to hear from anybody who suffers from the same.. i was diagnosed with PSP at the beginning of 2019 after 2 years of being on Parkinson's medication having no affects if anything actually made my condition worse.. i have had all the medications in the Parkinson's chest but nothing works.. i mam at the stage now where i cant walk anymore with falling to much to ,risk it.. live is not easy at all.. i am 67 years of age.. i live at home with my wife and youngest son.. my mind and brain are performing as well as a 50 yo .. anybody who can help with some info about this PSP would be much appreciated.. thank you ..bob g..

  1. Hi Bob G,
    I'm sorry to hear that you are getting to a stage with your PSP with falling and other scary symptoms. Here are two articles that our editors have shared with the community over the last few years about PSP. I hope they give you some answers. Please let us know if we can help you find more information.
    https://parkinsonsdisease.net/answers/progressive-supranuclear-palsy-psp
    https://parkinsonsdisease.net/clinical/progressive-supranuclear-palsy

    Best regards, Suzanne Troy, ParkinsonsDisease.net team

    1. Thank you so much for that info Suzanne.. I have learned a lot from the first web site you sent me not that i am not unaware of the symptoms but it is more a reinforcement of the detail in my mind.. the second web site referral.. it touches on subject that a lot of the specialists are not aware of and that is that the normal PD medications can cause problems to those with PSP as was my situation.. i diagnosed with PD 2 years before i was diagnosed with PSP.. the specialist i saw back at the beginning when all i had was a tremor in my right hand.. that i only had it mildly and with Levodopa i would have a reasonably trouble free existence for the next 10 years of my life.. how wrong he was.. i complained to him number of times that i seem to be getting worse rather than better and this went on for several months and every time i had a consultation with him he would change the medication to something more potent.. i eventually went to my GP and we decided to see another specialist.. i live in a rural area and it is not as lot of choice without having to go to the major cities so as a consequence i had chosen Canberra for my first choice and as it turned out my second choice as well.... when i got to the specialists rooms on the second occasion he was next door to the first one i had seen.. any way the second one i saw said to me on my first consultation that i should stop all PD medications immediately as he thought i had some other disease other than PD but he did not know what it was but we would see how i would go without the medications.. I made an appointment to see him in about 6 weeks from that date which is the norm.. i went home with a new confidence that someone had listen to me and taken action.. i had no withdrawals from the PD medications except from the side affects of being very fatigued and falling asleep all the time.. this was all in the past for me now after about a week of being of all the PD medications.. i returned to the specialist in Canberra for my scheduled appointment and the specialist was impressed how much my demeanor had changed and i was feeling much better..it was agreed that i was better of without the medication he did a few physical tests on m and said he still suspected it was something other than PD and he would set an appointment for 3 months to see him again.. i returned 3 months later in which my condition had deteriorated to the extent to where my gate was freezing more and more he said that it was a normal progression from_PD but it did seem to be coming on a bit quicker than what was the norm.. so i said i do have PD then and he said i don't know what you have but it has a lot of the symptoms of PD.. i will see you in about 2 months and in the mean time i will confer with some of my colleagues and see what they say... returned in 2 months and my condition had deteriorated even more where i had had a couple of minor falls... the specialist said that he and his colleagues had come up with nothing new and his suggestion was that i go back onto the PD medications though he would change the from the ones i was on.. I told him was not happy but i would try anything to improve my life….. by the way when i went to see him this time he had moved his rooms next door to where my original specialist was as he had decided to retire and had sold his practice to my new specialists.. i went onto the medications for a period of time to again suffer the side affects with no outcome for the better in anyway..i again met with my GP.. she suggested a well renowned specialist who was in Sydney and i made an appointment….. i had to wait about 3 months before i could get to see him.. as soon as he met with me he new i had something else other than PD he put me thru a number of tests and came to the conclusion that i had PSP and I was to stop taking the PD medications immediately.. he said there was no known medications that would help with PSP and i just had to live with it.. I scheduled another appointment for 6 moths.. i went back in 6 months for a couple of hours of mental and physical tests and no scheduled time with the specialist.. again i was disappointed with the attitude of the specialist.i met with my GP again and she suggested another Sydney Neurologist… by now i am restricted to a mobility scooter to get around because falling backwards and one very bad one i had that left me in hospital for 7 days with 2 fractured vertebrae.. i went about 5 months ago to visit my fourth specialist and he admitted me into RNS hospital Sydney to see what i actually had. This specialist seem to be genuinely concerned about my health and the fact that i was not getting much help from the rest of the fraternity… I will just live my days out as confident as i can to lead a normal life as much as I can….. thank you… bob g…

      1. Hi Bob G, I'm glad that you benefited from reading the two articles on PSP. I appreciate your candor in giving us the details of what you have had to endure in getting a correct diagnosis. Again I'm sorry for what you have had to go thru with PSP. We appreciate you sharing your story so this might help others that have similar symptoms and need some encouragement to follow thru with specialists. Stay strong and keep us posted on how you are doing in the future.
        Best regards, Suzanne

    2. Thank you Suzanne.. your words are very encouraging .. very much appreciated.. bob g..

      1. You are welcome Bob! Please keep in touch with us on how you are doing. You never know if you may inspire someone else with PSP!
        Take care, Suzanne

      2. thank you.. much appreciated.. bob g..

    3. there is a group on facebook called corticobasal Degeneration and PSP find a cure. YOU WILL learn more than you ever want to know.

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