New to this


#1

Hi

Diagnosed jan 2014 age 47 just wanting to say hi, medication I dont know if working have nothing to compare. Any one finding any positives from theres. Just wanting to do the best I can im sure like all of you guys  are already doing


#2

Hi chickenlegend . I am recently diagnosed too - sep . I am 45 . At the moment I am just on azilect which has had some effect but still symptomatic . Main problems for me are stiffness painful arm and leg . Right sided - I'm right handed . My handwriting is pretty bad starts off ok but can't write for long . I've been for hydrotherapy today . I asked to be referred for physio and she referred me for this . It was helpful . Going again next week . He wants to try and build up muscle strength in right side and help pain . Have you had physio ? . I work full time at the moment sometimes it's difficult . Find driving ok but my leg does hurt . Exercise is good they say so trying to do more of that and do feel better afterwards . Thinking about buying an exercise bike or treadmill . I've read it may help slow progression . Taking vit d as this was low and dr thought may be responsible for muscle pain. Asked him about taking coenzyme q10 as there's some thought this may slow progression . He said yes . Some people take vit c and e too . Best wishes 

 

#3

 

hi i'm 44

diagnosed oct 1st,

I had  various pills for a year before diagnosis and now sinemet, tis difficult too compare/analise every moment of the day, ring the changes, and doctors expectations of the pills when there's a lot going on.

Maddison i had non existant Vit-D when i went though the process of diagnosis, i was given some pills too re-build it, but the strange thing is i'm a outdoors type as i spent most of my time out in the sun at all times of the year and often or not had a tan in jan.


#4

hi everyone,

new to this so not sure how to start.my medication for pd consists of 3 tablets 2 mg of requip xl,1 tab ragasileine 1 mg and sinemet plus 3 tabs daily.plus a daily dose of 5 other tablets for blood,colesteral,and depression, i last saw my neurologist in feb and my next app is in march next year,lately i feel very tense with a stiff neck and heavy head,not sure if this is a progression of the pd or something else,ive booked a blood test for next week but i feel the year between visits to the neurologist is far to long especially for how long i see him for.


#5

My wife is on 125mg of sinemet plus it stops her right hand fom shaking but not sure about anything else. She saw a consultant for the first time  31st October 2013 and then March 2014 (she then got conformation it was Parkies) she was waiting to see him again when we found out he was 2 months behind with his apointments !We spoke to a couple of people locally who have Parkies and they recommeded a different consultant, we are waiting for a appointment with him. It seems that nearly everyone with Parkies is different what drugs help one person may not help another.My wife has had lots of water infections that also bring her down and these stop her getting into any routine, she was doing exercise and working until early September.....lets hope the new consultant can be a big help.( I posted Our story so far the other day )                                                

                                                     Billywhizz


#6

Hi all 

Sea angler - sone research think there may be a link between low levels of vit d and Parkinson's . It's strange you seemed exposed to the sun a lot and it was still low . Some people have difficulty absorbing it . I have always hated milk and have wondered if this may have played a part . In getting my head round this I still keep thinking what has caused this ? Futile really . Researchers do seem to believe it helps with cognitive impairment depression and has an effect on the physical problems associated with pd . Don't know what the average daily dose is . I'm on 800 iu daily . 

Cocktail mix - I agree a year wait to see consultant seems far too long . Do you have a pd nurse or support worker ? I also get a heavy head and have had this for some time before diagnosis particularly right sided which most of my problems are . I would ask for an earlier appt . Is this your first time on here ? If so welcome .  I have found this forum a great help . People have been very supportive . 

Billywhizz - welcome to the forum . I hope your wife sees some improvement soon . Good luck with the new consultant . He comes with recommendation . 

Have a good weekend just taking the dog to the groomers ! Then food shopping . What a drag ! Had hydrotherapy yesterday and feel really stiff today . What do they say no pain no gain ! X


#7

thanks for responding,yes first time on the forum and no i have no nurse,she retired and they have not replaced her;ive just joined a support group and my first meeting is wed so fingers crossed.


#8

Hi cocktail mixer hope all goes well Wednesday . I have not joined a support group yet . There is one in my area but I know someone who goes and she told me everyone is elderly . There is a working age group a bit further away so thinking about that . Don't fancy the drive as its on an evening because of work and getting quite wintry now . I'm surprised my pd nurse has not set one up for younger people as its more common than I realised .