Just read the posts in this 'watchamacall it' I couldn't possibly have had PD for 26 years. I'm too young - I should have said 16 years!
Sorry
Casie
Morning smudger..
What were your side effects from ropinirole? I usually feel nauseous when changing or Increasing my meds. PD consultant explained to me reasons why i will stay on both sinimet and ropinirole together cause one Is good for treating tremor, balance but could then have more dyskinesia symptoms so the other drug will try and balance it out. Choices we have either shakes or wobbly movements. ha ha.
If u do hear me in Bristol let me know as do song requests. Ha ha. The dog gets her own back by being a little monkey, maybe its her way of saying sing and do something I shouldn't. Ha
good morning olleybex ...i had the common affects with ropinerole ,nausea ,tiredness , weightgain and i did explain to the consultant that on several occasions on waking up in the middle of the night hallucinating..i dont know if it mensions that on the packet?...although i had a friend sit in on the appointment with me , because i tend to forget things .we cant remember what exactly why he came to make that decision ,but close friends have noticed a change for the good.. now i think of it, ill call consultant to see when i adjust dosage again .besides a bit of nausea i havnt had no side affects ... choices ?? Ha...we know what they are..? keep moving forward ,try to SMILE even when you dont feel up to it (which i so hard sometimes)...and?..youve got it SING at the top of you voice!!! HA ha...ps sing HOW you feel , its meant to be good for the soul,everybody at my local will tell you that when im on full swing on the jukebox.....?? ill send request .have a good day..
Hi uncle al,
I have never bothered with social media either but feel this is different cause unlike some useless comments people put on s.m. sites all communications on here are helpful and interesting.Like you i have tried different meds from pramipexole, stalevo, and patches. I too have felt at times people look at me funny maybe cause i'm aware of my physical symptoms and feel self conscious sometimes.
I can't work at the moment, I had 2 lots of surgery on bunion. After second op 2014 my toes are still broken. I found it hard to adjust and can still get frustrated with not being able to do what I once could. I used to be a pharmacy dispenser and loved my job.
Ollybex
Hi echo,
Yer finding out there more people with than i thought. Finding it helpful chatting to people with same condition.
Having hydrotherapy treatment soon so i'll be swimming with you, so we could sing while we swim. Ha ha.
ollybex
Hi bettyblue,
Thank you for your positive message cause not sure about apo-go.
My PD consultant said i would have to go in to hospital for tests before start on injections. What does that entail? Did u have any side effects when first started? Glad to hear its positive effects for you and your symptoms. I'm not keen on taking medication but slowly coming round to idea.
Kind regards
Ollybex
Afternoon smudger,
I'm not sure i like the sound of side effects especially hallucinating i can have weird dreams as it is.haha. i can only give them a try.. Yer i "always(hang on feel a song coming on, join in if you like)look on the bright side of life"... i don't intend to change now cause i got PD.. Try to always think positively (rare i take to my bed with wet cloth on my head...)When you next on the jukebox my request is whole lotta shakin' going on. Hehe.
Ollybex
Ha ha .........more like shake ,rattle, and roll !!!!...for me .. and that just after having a quiet night out ...Evening ollybex .that hallucinating was strange , and only in the middle of the night ish ,still on ropinirole like i said so madapar must be doing something i suppose ? im pretty much ok and try to think positive , i keep busy , but just had a bad time of things over the last while besides the pd... anyway ! less of that and ....Always look on the bright side of life , lifes (not) a piece of s..... rubbish?..... think ill leave the singing to you for now.. oh.. and sing it in a broad westcountry, bristolian accent if poss ..ha..chin up..
Wonder if Shaking Stevens has PD, and Jerry Lee Lewis had a 'whole lot of shakin' going on'. Even the Swinging Blue Jeans had 'hippy, hippy shakes'!!! As for the Tremeloes, well..........
Hi Ollybex,
The hospital visit is called a response test which entails them giving you the drug and they observe you to see if you suffer from nausea and work out what dosage to start you on, this drug can cause that in some people it can be controlled with anti nausea meds but often after a short time our systems adjust and the nausea goes away.
I was due to go in for a response test but I collapsed and ended up in A&E so they decided to do my response test there and then.
I was luck as nausea did not effect me, but that drug as I have said is the only thing that is keeping me out of a wheelchair distonia for me is the worse possible symptom it make me feel so vulnerable I hate it with a vengeance cold and stress definitely set it of. And what does not help me is a am not a naturally calm person so my advice to you is talk with your PD nurse or dr and do some research on distonia you can get info on it from the distonia society.
I wish you luck and I hope you get it sorted.
Kind Regards BB.
morning twinks .......well ?....well they say laughters the best medicine..and why not eh..,started taking them m c capsules yesterday , i know its early but havnt changed into superman or a pumpkin yet so alls well .
Yer sometimes hard to stay positive and up beat all the time, having all the troubles PD can cause then life in general can throw some more on top of that.. I try when have times like that to prioritise the problem and if something can be done to change it for the better then i fight it out, which for me entails lots of paper and lists. Haha. If situation or problem can't or won't change then i try not to dwell on It and move on to next problem/issue if poss. Sometimes as Peter Kay would say i feel like a hob nob("go on dip me again"). Hope things ok now apart from the PD..
I'm working on the broad westcountry bristolian accent.
Hi Smudger, yep, you have to try and keep a sense of humour. Not feeling terribly humorous today though....on a bit of a 'downer'. Don't know why.
How many m c tablets are you taking per day? I'm still experimenting with dosage and timings. However, after 2 weeks, I think they're making a difference. Feel less drugged up, anyway.
Let us know how you get on.
Twinks.
Evening smudger, twinks,
My dose system was;5.30am-62.5mg sinimet, 6.30am 125mg sinimet plus, 9am azilect and 125mg sinimet half cr, 11.30am 62.5mg sinimet 12.30pm 125mg sinimet plus 3.30pm 62.5mg sinimet 4.30pm 125mg sinimet plus 7pm 125mg sinimet half cr 9pm 125mg sinimet half cr 10pm 125mg sinimet half cr.
I have now been told to take the 62.5mg with the 125mg plus together and night time cr all 3 together at 10pm. i have been doing this since Tuesday and feel It's wearing off to quick and feel a bit flat. Not sleeping at night also. I don't feel right. Does anyone else take large dose of cr altogether?
Going to try ringing PD nurse tomorrow.
Hope you better soon Twinks.
Ollybex
Hi Ollybex, I'm on stalevo and azilect(rasagaline) and generally it seems to be working ok although about 12 months ago I went from 4 a day to 5, and even have to take one more if I wake in the wee small hours. I did a voluntary job after the Fire Service, assisting people fill in dla forms for a local charity.
I'm still driving(just) and have gone to an automatic as I get left sided pain (my pd is working down the left side). Do you drive ? When is the time to quit? I value my independence. I'm coming up to 6 years and notice that my shake is getting more frequent, from speaking to others is this fairly normal?
Surgery on a bunion and you're walking round with broken toes! That doesn't sound right- I'd be kicking my GPs door down, perhaps you had better save your poorly feet and just knock loudly.
Uncle Al
Evening twinks..bad day ??...i too have bad days and know where your coming from when you say ..dont know why . them days i might go and have a pint,coffee , try to keep myself occupied ,whatever? sometimes having friendly faces around help and the rest of the time prefer to be alone and be lonely , if you can understand that ?.just letting you know your not on your own with that..think its best to take one day at a time..im sure we could think of another request for ollybex somewhere,we could do a trio ,the three degrees?nope!.. cant do that cause im a bloke, ill leave that to you to think on .Ha...... its only my second day on m c capsules, im taking 1x750mg on lunchtime.. still taking ropinerole, madapar at moment ,must read more into it tonight maybe tommorow...im not too good with computers , started this message this this morning !!! ha..keep smiling best you can .mike
hello olleybex ,this may sound daft , im not too well imformed being new,ish to these meds, i gather sinimet and madapar are brand names for levodopa,which i didnt know sinimet was .at the moment i just take ropinirole 8mg slow release and madopar(levodopa/bensrazide)50mg/12.5mg,three times aday usually before food .. would be possible to have a slow release med ,to stay on an even keel,and save having to take at all differant times to make things easier ..hope all sorts itself out with pd nurse . mike
Hi Smudger,
Not sure you should take Macuna if you're on other Levadopa drugs. I slowly came off Ropinirole even, before starting the MP. I still take Selegiline though. Think you should research it a bit more, or you could end up growing two heads!! Seriously though, Selegiline and Rasagiline are not Levodopa meds., but Sinemet and Madopar are. You don't want to end up overdosing or putting your health at risk.
Lecture over!
Spent a lovely afternoon with a PD friend and feel completely happy and good today. Tomorrow could be different........one day at a time, is how we all have to take it. How does the saying go? 'when she was good she was very very good and when she was bad she was horrid!
....thank god for that.. said all in one breath!!..Ha ha...Evening Twinks. on a serious ish note ,i spoke to my gp this morning he said should be fine,although i will mention to pd consutant as ive got to speak to them anyway, thanks for your advice, do apprieciate that...Glad you had a good day today ,deal with tomorrow,,tomorrow,and keep smiling...
Hi uncle al,
I'm 3yrs now lots of different meds and Its seems symptoms get worse each time so now going try a few natural ways to see if they help.
I have been reading a few things about boosting your own dopamine levels changing diet is one so going to give it go. I only got as far as driving lessons. Know what you mean about keeping Independence. I struggle with walking too far cause of cramps and toes curling/cramping a few people have suggested going in a wheelchair when this happens, not my way of thinking.
My toes been broke since 2nd failed op in 2014, not much they can do even been for 2nd opinion. They say the only thing that could been done is bone graft but cause complications with feet not good choice.
ollybex