New girl!

Hello. I’m over the moon to be able to join you all! For 3+ years we have been walking in a fog! My partner Pete started getting Parkinson’s symptoms about 8 years ago, firstly anxiety and sleep disturbances, constipation and lack of initiative. I took him to the Dr eventually and we got to see a consultant about 4 years ago who ordered a scan. It showed some fronto-temporal atrophy and we were given a diagnosis of FTD. Not funny! Since then he has been gradually getting more and more Parkinson’s symptoms and now can only walk short distances, has had several falls and finds he chokes sometimes when drinking. He is very stiff and has developed a mild tremor now too. His speech is mumbled too and very soft. We have recently been going to an exercise class for Parkinson’s and I was amazed at how similar others were. We heard about the Parkinson’s nurse, but of course couldn’t contact her because we had the wrong diagnosis! Finally yesterday, after nearly 3 years walking alone, we got to see the consultant again, and he agreed it was in fact Parkinson’s! He prescribed Modapar and will put us in touch with a speech therapist, and the nurse and promised to see us again soon! I then joined this forum today and feel supported for the first time on this long journey. Covid has been blamed for this lack of medical support, but I sense that a FTD diagnosis is less interesting to the medics? They don’t ever like being told either! Am I getting cynical? I used to work as a nurse and have seen many people with Parkinson’s in my career.

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Hello Peter
Oh my goodness what an ordeal you have been through and it’s great you have finally got to the right place even though I wish it wasn’t so of course. Actually I don’t think you are cynical at all. Since coming to the forum I have realised I am one of the lucky ones. I had a straightforward journey to diagnosis, have twice yearly formal reviews with an excellent consultant or specialist nurse and I have been able to contact them in between should I need. Too many struggle not only to get a diagnosis but to get the correct support afterwards. Getting your voice heard sometimes feels like an impossible dream. Still that rather black view apart I’m glad you found your way here. Feel free to ask anything there’s usually one or several of us pop up to help or do what we can to support.
Will have to stop there at 4.30 am my typing is not of the best.
Take care and welcome
Tot

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