I have been reading all the post, I was the same as your wife Timkford (Tim) I hadn't felt well for a few years, lost a stone in weight in 4weeks & just felt unwell. I saw my gp & due to my health history (which I won't go into) I was sent for colonoscopies, endoscopies, scans bloood test you name it! I am still being moinitered today because of the weight loss etc. But it all came to a head last year in June, just like your wife Tim it came to breaking point with me. I eventually saw a nuro Consultant on xmas eve & was told straight away what it was after doing some test with him. I was totally shocked if honest. I knew something was wrong, & if honest did think RIGHT at the back of my mind it could be something to do with my nervous system, but just didn't want to go there!
I was prescribed 1 50mg Madapar aday for a week, then following week 2 then 3. I have noticed my walking is slightly better. I'm not getting strange looks as if i've had one too many sherry's! Lol. Or getting told off when walking & straying off into someone's pathway whose in a hurry (as everyone is today!) & wants to pass me. I have been on the 3tabs now since seeing the Consultant xmas eve.
Last week I went & had an MRI then next day met my pd nurse for the first time. I have to say it went rather differently then I expected. & the impression I got after seeing the Consultant & chatting to the lovely nurse who comforted me on that horrid xmas eve that I would be seeing the nurse quiet regular & be very supported. But after my visit last week with her & being given lots of leaflets etc. & being told about a support group which is far to far away for me to attend, so no luck there! I have felt all a bit unsure of the support network. I can call her anytime so that is very helpful I guess. My next appointment with her is July! I must admit the visit also went differently from how I expected & I think she did too! (My son was with me thank goodness). she asked me what the Consultant had said to me on the day I was seen. I started to tell her about him asking about my health history, etc then did some test then just told me what I had. She replied what did he say Rita. I then said he told me what it was, yes she said but what did he say it was rita! this went on once or twice more, until she made me say the words, & oh dear what's wrong with me as I just broke down totally! & spent the rest of the time crying, more like sobbing. & ever since last thursday its the same, slightest thing & i'm crying. Is this normal, has anyone else been like this!?
My tablets like you have all been saying have now been increased. This morning I had to take 2 of the Madapar at breakfast & for the rest of the week then next week introduce 2 lunchtime for a week then the following week 2of an evening . I should by the end of the next 3weeks be on 6aday. She did tell me if the nausea & side effects are too bad I can take my time with the increase. Is all this normal?
I don't know if its me in denial about everything going on with me, but I have no tremors as such, just the odd one of an evening whilst lying down in my upper arm. My symptons are really bad weakness in my right arm & especially hand. I find it so hard to grip or hold things. This really frustrates me as I use to be able to fly through my housework & then garden or paint. Now it take ages, & I get so tired so quickly. & as said before am so tearful all the time & just low.
I had an unpleasant mole removed from this arm 3years ago & I keep thinking did they cut into my muscle too much!? Then 2years ago I had five tears repaired in my shoulder, same arm again!. Did they repair it right or has it torn again, I ask myself would this be what effected my balance & not walking well. Would this be what's causing the weakness!! Are they right about my diagnoise! But then I think what about the general feeling of just being unwell, & getting confused. & i've noticed a problem even when eating & swallowing is hard!!? So am I just still in shock & have I not accepted my diagnoise yet? Obviously you can't all say I know but its just good for me to talk to all of you who I feel will understand me. Even though i've met my nurse I feel lost with it all. Support groups are good if your able to attend them & it doesn't seem like I will see the nurse often. So you lovely people are my support right now.
I don't seem to see that many people on Madapar eitheir? Is it a good drug or is it one that is normally given when you are first diagnoised? One comfort is I have been told my Consultant is a specialist in pd, so that is reassuring.
Well after all what I have said, & no idea if i've made sence as my head is a little fuzzy this morning & taking the 2 Madapar do I feel nausea! Oh yes!. Thank you for reading this, & I wish your wife Timkin well, I am the same as her a worrier at the best of time. Wishing you all on here a good day & week ahead. & hoping your all coping as well as you can.
PS big thank you to bb she is a lovely support. I just wish I could work out still how to use this site. I must be stupid! I use to be a PA would you believe, & self taught myself the computer, yet can I understand this site no! It said the other day I had 1 new notification, could I find it no!! I kept clicking onto the notice but no couldn' see any new notifications. So if anyone wants to contact me it may have to be by private message! All take care. & I will give myself a good kick up the rear & try try to stop being so emotional & cry so easily. It hasn't been easy to type this as I am private, (i've said before & am embarrassed & its just not me to say how upset I keep feeling, but I need to say it to someone, & I feel I can this site, whoever gets to see it that is!)