When to start medication

Hello. I’ve been diagnosed with Parkinson’s for almost a year and am not on medication. I was just wondering when to ask for medication. At the moment I’m just treating it as a nuisance, but it’s getting a little worse. I have the shakes in my left arm and it’s started on my left leg as well. My GP is not very helpful not in an uncaring way. It’s just that he says I’m the only patient with Parkinson’s they have!

Phil2 if i were tou I’d ask gp to refer you to Parkinson’s unit either the consultant or Parkinson’s specialist nurse. But I’m sorry to hear your gp is not being very helpful. You may not need meds yet but i think probably you do. The fact you’re thinking about meds means to me you’re worried about your condition. You need reassurance not being fobbed off because are the practice’s only Parkinson’s patient. I was probably suffering for 3 possibly 4 years before i broached the subject, then my treatment started within a month. Not only with meds but also occupational health, physio, speech and of course my gp. She has an interest in Parkinson’s and while helping and involving me, in decisions, is gaining knowledge of the disease. Perhaps your gp should look on it as a learning process. My condition is now under control with dosages set by me in discussion with gp to the extent that I’m typing this while i have some time on holiday, on my own, in italy. Anyway good luck getting the help, in whatever form you need

Hello Phil2
Whether or not to start medication and when is an issue that crops up time and again here on the forum and there is not one simple answer, like many things related to Parkinson’s decisions are made on the basis of what is right for you and it is your decision in consultation with your medical team. For me and I think many people, the crucial point for medication comes when it begins to affect quality of life, making it harder for you to do ordinary, everyday things or do whatever is important to you. Your post suggests to me that you are at that tipping point or close to it and maybe the time for medication is close if not already here. If you remain undecided, have a look at some of the other posts on this subject which may help.
Just a couple of points to note. Parkinson’s medication is by and large effective but it’s not a one size fits all and sometimes it can be a bit trial and error to get the prescription right.
Sadly it’s not uncommon for GPs not to be very well informed about Parkinson’s and if you have a consultant or Parkinson’s Nurse Specialist I suggest you contact them. If this is not the case karsoft makes a good suggestion in asking your GP to refer you. If this doesn’t get you anywhere {although I hope that isn’t the case} try speaking to the helpdesk who would be able to point you in the right direction. You may like to ring them anyway - sometimes its easier to speak to a person and you will I am sure find them helpful.
I hope this helps. Good luck and let us know how you get on

hi Phil2 When I was first diagnosed with PD I was like you. I think that you, like me can’t believe that you have PD it’s a lot to take in. Also, my mum who did not believe in taking meds, she used to say "“mother nature will sort you out” so things like this stay with you. After seeing my PD nurse twice (who is brilliant) taking her advice was the best thing that I did, she did not push me or tell me she explained everything about drugs in detail, all she said was “you will know you self when you want to start on meds” When I did first take them I myself had to start on 2mg of my drug then build it up. I am not saying which drug I started with as we are all different. Each time I see my PD nurse she will tawkee my meds, I have now had PD 12 years after a fall last year and a disagreement with a concrete slab. Well, that’s another story watch this space.

Hi mary1947 sorry you had a fall, i faceplanted a radiator pre diagnosis it led my to see gp and get the help i needed. Seems a lot of us experience falls either prr or post diagnosis. Perhaps it would be interesting to get a straw poll to find out how often diagnosis follows a gp visit after falls and whether post diagnosis and drug treatment the falls lessen in frequency. I’m lucky in that post disgnosis and with support from parkinson’s nurses, consultant and mainly gp i am able to vary strength of meds i take.example i started increasing dossges prior to my first trip abroad after diagnosis.I got to and maintained a suitable dosage which gave me best results, very few symtoms ie foot stutter, tremble. Unfortunstely can’t improve my varying vocal strength or memory lapses. At present I’m in italy, small hilltop village, and have included in my italian a statement that becsuse of Parkinson’s i forget names snd words both english and Italian, I’m amazed at how helpful locals and expats are in making life easier and to be honest more fun. I don’t take my illness too seriously here and tell them to treat me as they did pre diagnosis. One in particular expressed sorry for my condition. I pointed out parky’s is not fatal and in my eyes a lot less of a problem than his arthritis,he’s a musician. People keep an unobtrusive eye on me for which I’m grateful and after a 2 year hiatus I’m back and both the locals snd myself are grateful for the chance to meet again

Finally got to see the Neurologist again in late January. I’ve started taking sinemet 12.5mg/50mg tablets three times a day.

He said they would help with the stiffness I’ve been having along neck and shoulders, but not so much with the shaking. He was right.

Perhaps when the dosage increases it may help the shakes - I hope so. Still only affecting my left arm and leg. Sleep is suffering a bit too, but as I’ve always been a poor sleeper I’m managing ok. I hope whoever reads this is keeping well.

Hi Phil
Siment 25mg/100mg 3 times a day helps with my tremors - pre diagnosis I was shaking so much i had trouble getting washed/dressed - eating - doing anything around the house - now my tremor is only a slight nuisance on my right side when the tablets wear off - hope yours ends up helping too.