I have just been reading through some of your post & found them all interesting. I am newish to all this too. My diaganosis was Christmas eve, (which was rather a nice present to received). I am sorry to hear about some of your problems mentioned in your post. It does seem to be all concerning when first hearing about this PD.
I have only seen the Dr once a Mr Kock & he seems very nice & helpful, & told me as well as being a Neurology Dr, its also told me that PD was his main field of interest. So i'm assuming he knows a lot about it. When told I couldn't take it in if honest, & the poor man must have thought me mad, as I kept trying to persuade him to check my right shoulder & arm. The reason for this is because 3years ago when I started to become weak on that side & unwell generally, I had surgery to repair 5 tears in my shoulder. The very next year I had more surgery to remove a nasty mole on the inside of the arm on the same side. So you can imagine, I was putting my weakness all down to this, thinking have they cut into a nerve or muscle. I know they did tell me they had to remove more during my mole surgery then they expected. I kept begging this poor Dr Kock to take a look as I didn't want to accept what he was saying about me having PD.
Unfortunately though, he said he was sure, & bless him he sat with me & the nurse & they calmed me down with a chat & they had a cuppa & bicsicuit. I couldn't I felt too shaken if honest.
I have never heard of any of the drugs that you are all mentioning. & I am so sorry about the side effects that you are suffering Hawkeye 16. I do hope now you are feeling better & have sorted the medication out. I know from other medicines for another illness I have that when side effects cause such problems its very difficult to function properly & carry on your daily life. It makes my confidence really slump. You sound like you lead an active life too, so I do hope your feeling better. That goes for the rest of you on here who have been posting.
I have been put on a drug called Madapar, I started with one tablet aday now take 3. Have any of you been on it, & if so what are your thoughts about it? I also have just received my 1st appointment to see the PD nurse on the 12th feb. One other thing I would like to ask you too, is you all mention a datscan?? I was told I would be having a ct scan on my head, (which is due in 2weeks time) But i've now been told i'm having an MIR one done. Again have any of you had that done?
Well best wishes to Nevbar, wpgchap,silentwolf, Hawkeye,Goldengirl,Markhenrys Eileenpatricia, & lastly Lizzy65. I wish you all well. Its encouraging to read some post when they say they have had this PD years, & it hasn't really upset their lives too much, lets hope its the same for all of us. I Know my diaganosis was almost 4weeks ago now, but i'm still finding it hard to understand, & a little scary of my future now. I had planned to move this year to be by the sea in Norfolk, But this has left me a little worried now about the future. Take care all of you.xxx Autumnleaves.X