Hi BB,
i hope you don't mind me asking, but how often do you see you're Parkinsons specialist, and do you also see a parkinsons nurse? I see my neuro annually and nurse annually, staggered so that I see one every six months.
Good to hear you had a good day yesterday.
Ali
x
Apologies for underlining....oops
yes thats right ?
because i am on the proband study trial no drugs related to this trial just observational every 3 months staggered between specialist and pd nurse.
BB xx
BB
Who is making decisions about your drug regime and informing your doctor what drugs to prescribe?
L
Prof Sharma?
Hi,
you are very lucky to have so many professionals looking after you so closely. It took me over18 months to see a parkinsons nurse. I take part in the puk tracking of bio markers, hopefully helping to 'do my bit'. I am called every 18 months to give bloods and have several mobility, memory and dexterity tests along with a smell test. I've had two sessions so far (been dx 4 years). I was asked if my sister (non parkinsons) would take part in the study and she is happy to do so, but not been contacted as yet. It's all really interesting, I think the proban is a very similar study.
http://www.parkinsons.org.uk/content/tracking-parkinsons
Ali
x
I have always said I am lucky to be under Lincoln County If I was still in London I dread to think. I even see my GP monthly she is not an expert on PD but she just likes to monitor me closely so she can see I am coping.
All PWP should have this level of care as far as I am concerned but I don't supposed that will ever be the case.
You are right I believe the two study's are similar.
Stay Well Ali.
Karen BB xx
Hi BB - hope you are still feeling good. any response yet to your emails to consultants?
S
Hi,
i also hope you are still feeling good.
I have to confess that I find the amount of medication you take very concerning. You seem to be far more poorly after two years dx than I am after 4 years dx. I just wonder if some of you're medication is actually making things worse.
i am fully aware that we are all different, but it might be worth some consideration.
please be assured of my best intentions.
Ali
x
HI Supa and Ali yes they have come back to me with the advice of returning to my original meds but only on 3 per day and using in conjunction with the madopar, ali my PD has been quite aggressive like Gus on here that's maybe why i seem to be on a lot compared to others I was dx at stage 2 and within 18 months went up to stage 2.5 but i suspect i am possibly now at stage 3 last time i asked that question i was told still at stage 2.5 with complications developing i have a friend called Dawn who has be dx 2 years more than me and is still at stage 1 so we all generally will have this condition effect us differently, As i am involved with a clinical trial in London I know from talking to others there are folks out there who have to take more meds than me so in the grand scheme of things I am happy with my med's two days on the trot no distonia whatsoever and when I have to go to London for my reviews every three months I have to be seen in an off state then all my symptoms start to come on so I know the med's are not the cause in fact they are what makes me feel normal. I do appreciate your comments and don't worry I do know that dr's do get it wrong at times. I have a fantastic GP my specialist here in Lincoln and PD nurse and the head guys at UCL in London looking after me. I am quitely confidant that I am getting the best care I can my dx was June 2013 so nearly 3 years in but possibly had already developed symptoms 2 years before so I am possible 5 years in unfortunately that question cannot be answered. I now do not work so I can continue to look after me without that added pressure. Once again thank you for caring a both of you do take care.
BB xx
Hi BB
Who diagnosed you with PD and who prescribes your (or advises your GP) medication?
I had several doctors involved in my dx I sometimes wonder if too many involved was the cause of my mirapexin overdose.
L
Hi BB
i think you're involvement with Proband and a clinical trial is all very commendable. But, I still think that you're Parkinsons is worse than it should be compared to those who take less medication. Considering you are reviewed monthly by you're GP, three monthly by you're parkinsons specialist and parkinsons nurse alternately and every three months at UCL I am really surprised none have considered this.
my neurologist specialises in parkinsons and has a totally different attitude. When I started on sinemet plus, my dose was teetered up very gradually and I was monitored during this. My nurse suggested the Rotigotine patches to me at a time I was for one reason or another struggling. I refused to take more medication until I assessed if my changes were permanent or temporary and maybe caused by the fact I'd put weight on and wasn't sleeping. Her reply was you'll have to one day. That was 18 months ago. Since then I made sensible changes and sinemet plus again worked and does work beautifully for me. My neurologists advice to me was to have no changes to my medication by anyone but himself, and I'm happy with that. Yes, I know my parkinsons has got worse over the last 4 1/2 years, but I have no idea what 'stage' I'm at, it's never been mentioned to be honest. But I feel happy in the fact that the person who diagnosed me cares for me and monitors me without just another prescription being issued.
wishing you lots of better days.
ali
x
hi ali p
i have very aggressive Parkinson i was 34 yrs old dx six yrs in i had tried several meds and had compulsive buying with one of them ,i was on a very high dose of sinemet at the end trying too keep me in control but had very bad dyskinesia so it was a bit of shit or bust so i had dbs ,and this worked very well for me untill about 2 months ago when my walking became worse but i am great now my nero has added entacapone & rasagiline. this is my meds 1 am now in my 8th year of pd nero also thinks i had 5yrs before dx making it 13 yrs .8AM 1-sinemet 125mg .1- rasagiline 1mg .1-entacapone 200mg .2- tramadol 50mg.-1-dicofenic 50mg. 4- gabapentin 300mg. 10AM 1- sinemet 62.5mg. 1-entacapone 200mg .12PM 1- sinemet 125mg 1- entacapone 200mg .2-tramadol 50mg .2PM 4-gabapentin 300mg . 1-sinemet 62.5mg .1 -entacapone 200mg . 4PM 1-sinemet 62.5mg. 1- entacapone 200mg .2-tramadol 50mg .6PM 1-sinemet 62.5mg. 1 entacapone 200mg.8PM.4-gabapentin 300mg .2-tramadol 50mg .1-sinemet 125mg .1- entacapone 200mg.10PM 1-sinemet 250mg cr .3-amitripyline 25mg .1-zopiclone 7.5mg. i know people with dbs who are on 125mg sinemet every two hrs & also have dbs. I myself sort out what sinemet i take & tell my dbs pd movement specialist nurse & pd nurse also my dbs nero every 6 months or if any tramatic change just e-mail or phone. Everyone is so sensitive to what pd meds you take & this is why alot of people sort out there own pd meds .
Hi Gus
Just to clarify pwp should not alter the amount of drug they take nor stop taking medicines as this can be dangerous. Always discuss with a medical professional assigned to care for you before any changes.
I have a flexible approach to the times i take my levodopa but i have discussed this with my neuro and regularly update.
L
My dx was DR Sharak my Neuro whom started me on meds, at first then my case was handed to PD specialist Prof Sharma, Prof decides what meds and how much for me to take. I still see my Neuro yearly as well as being reviewed 3 monthly by PD team at Lincoln County, And Prof advises My GP accordingly.
No one else tampers with my dosage if I encounter problems I call the PD Clinic and ask to see someone.
BB .
No of us know how our PD is going to effect us at anytime and I know how I feel when I am not medicated it is horrible, as for the stages a large percentage of Neuros and Dr's keep this info quite from their patients
Why?
For me I need to know as I have been studying this from the day I was dx, I also know different dr's prefer different meds I have never been offered sinemet plus and I am happy with the way my meds are currently working I was offered the AP-GO pump I declined. Do not feel I have got bad enough for that plus it looks like a stoma, my appearance is quite important to me so I will not have that sort of thing altering my appearance and my attitude towards my condition, that I know would mentally send me down hill and that cannot be allowed to happen.
BB xx stay well Ali xx
I've no idea about stages, no ones mentioned it during diagnosis or treatment, i do remember my neuro gasping and shouting almost as i told him i'd had a tremor for 15yrs before i sought help, well that's how it is and was, we are all different, i prob had been living with it for 15 or more years but reached the end of my tether and sought help i could no longer function.
I have been lucky in having a say in Medication i have kept it much lower than either neuro or nurse have suggested moving the dose up to or on too, rather than the Neuro's ethos of a 'high dose and coasting too the next', i've kept it lower so i can see and ring the changes and feel the benefit through gradual change I feel more in control. finding my own limits of ability & when PD or other problems is effecting them.
hi leyther
since i have been on dbs i am allowed to adjust my meds accordingly to day to day depending whether or not i am in the ON or OFF situation, as i am very sensitive to the meds & this works for me & my pd specialist i suppose it comes down to how professional & responsible one person is & understanding parkinsons & the affects pd meds have ie if i took 125mg at 2pm and was dyskinetic at 3-30pm ,the next day i would try a 62.5mg at 2pm. So i do not have to suffer uncontrollable movements maybe for days till i get hold my pd specialist to ask her permission.As i have very different days depending on how much exercise i do therefor how much i use the pd meds up !
WELL SAID SEA ANGLER
