Forgot to mention Nigel: went to a Parkinson's support group last Saturday morning for the first time, and found it very helpful. The lady that runs it phoned me on Monday morning as she thought I looked like I needed support (boy, is that ever an understatement!) and gave my number to the local Parkinson's UK agent, who has arranged to come a visit me next Tuesday. I'm desperately hoping for some enlightenment through her.

It may not seem it but little changes, such as the visit on tue, often lead to better things . Any dose adjustment can cause problems, Iv sruggled this last month with a double change so upping/downing two different meds is going to be hard.
I complained to my neuro of excessive daytime sleepies when I got to 6mg requip xl
"Rubbish" he said " I regard 6mg as a sniff, I'v got people on 50mg !"
I replied that it may be a sniff but it's a sniff thats made me buy a camp bed for work and pointed out requip had only been tested as safe to 24mg.

Consultants can be intimidating but are just people like us.
They have a duty of care
Whatever the reason your husband was'nt in this state before the changes.
There is no need to confront/challenge....he will see and you will explain how ill your man is and he will make it better,so don't worry.

Your devotion,the love and care you demonstrate is increedible,all you've done,forums,groups,,calls etc you'll win

I'm away next week but will check on progress when I can.

Nigel

You're very kind Nigel, and I have really appreciated your help.

I quite agree with you about consultants having a duty of care, and they should be prepared to listen to us properly. I've been incensed with what I've learnt today, and I'm determined to get answers from him.

Sorry to hear you've not been so great, and hope you feel better soon.

Would like to keep in touch.

Best wishes, Viv

niggs I think you are right, the balance of doses of our different meds and supplements is very delicate, different for everyone, and needs to be changed accordingly. I had bugger of a time with what should have been a very benign addition of an anti-cholinageric to my (what I thought was stable and effective) regimen. my neuro meant well trying to help with tremor, but in hindsight should not have messed with what was working. good luck to you budgies, I hope things work out. (ps I used to listen to a welsh rock band named budgie back in the 70's)

Thanks for the kind words Billy. I hope you continue to keep as well as possible.

Best wishes, Viv

Daws
 

Budgies

My new consultant doesnt like agonists and reduced my ropinerol. It was horrid. DAWS isn't talked about much at all and seems little recognised. I stumbled across information on a forum thank goodness. realised what was happening. There doesn't seem to be much research yet. Here is one article.

http://link.springer.com/article/10....266-013-0090-z

PUK also has an info sheet on their site and looking for it I found this information.
http://www.parkinsons.org.uk/content...inson-congress

If you follow the link in the text you will see that it seems PUK have a campaign around DAWS!

The closing paragraph reads "If you're affected by this issue and would like some help and support, you can contact our confidential helpline 0808 800 0303. "

just curious, what dose/formulation of requip were you taking and how did you like it? if your neuro doesn't like agonists what is going to fill that gap? not being critical, just interested in people's experience with requip.

i needed to extend my on times and try something not affected by protein so tried requip which i had tried 11 years ago and didn't like. due to insurance had to start with the regular requip .25mg three times a day, was a zombie with that low dosage so chickened out after 4 days and stopped which was likely too soon to get used to it. sorry to digress. tried neupro samples and hardly felt anything up to 2mg, after which i stopped since i couldn't afford them but was curious to see if i could tolerate it.

i know parkies that do just fine on requip, stalevo, amantadine.

Thanks for your input dilmar, I shall check out the links you mention.

Do hope you're feeling as well as possible now.

Kind regards.

Hi Budgies

Just wanted to check on you both Viv, any change, appts,visits ?

Nigel

Soccertese, below is my experience both current and historic with Requip which may be of interest.
2009-dx, given starter pack and titrated to 6mg and swapped to Requip xl 6mg.
I was happy on 6mg for many years but daytime sleepies was so bad I got a bed for work. I also went from normal sleep to blocks of 6h's through the night.
I tried without success to tolerate 8mg but was thwarted by full on anxiety attacks . As I was now undermedicated I started sinemet cr 50/200 x 2.
I found that when I started levodopa I had no problems and 18 mth ago suddenly tolerated 8mg requip xl.

Now as stated in my first thread and I apologise for repetition, Iv just increased requip xl from 8mg to 10mg for 2 weeks then up to 12mg.
I have now been on 12mg for 4 weeks and there are some motor improvements but the cost is I am now managing to only sleep in 2 hr blocks,it takes far longer for any meds to kick in, the improvement is mitigated by a significant increase in symptoms when the meds wear off with the added highlights of dyskinesia and awful brief episodes of being spaced when I suddenly find myself, for example, staring blankly at the toilet bowl,not moving/thinking for 30 secs or more. All these negative things are new to me and have just appeared and then got worse over the last 4 weeks in direct proportion to the introduction and build up of 12mg Requip xl.

I am now in the difficult position of giving it another week, hoping to ride it out or reduce to 10mg,the last point at which I saw improvement. Either option is a scary prospect.

As an example of how unpleasant these drugs can be for some people and to illustrate how even a low dose can bring on a world of hurt search for drug user reviews such as 'ask the patient' but look for people who have been prescribed Requip for restless leg syndrome because the doses are minute 0.25 - 0.75mg for this condition.

Another aside regarding dopamine agonists is that although they are classed as 'agonists' when you read the manufacturer's professional info they admit they don't really know how they work but think stimulating dopamine production is the most likely mechanism.

It may not be available to you or suitable but Safinamide may provide a filler function as it is a dopamine re-uptake inhibitor and also there was, though It may have fallen by the wayside, Pardoprunox going through trials. This is/was an part agonist part antidepressant. (again this dopamine/serotonin link)
My conclusion is that dopamine agonists are very serious meds indeed.
Just a final thought the various trials and after market studies show alarming volunteer drop-outs for a drug thats approved and given out,at times,like candy. and yet many people benefit with little problem.

I guess that's why our charity ribbon is grey, 'cos nowt's black or white in Parkinsons.

Nigel