yes I too suffered from symptoms many many years before dx. The depletion of dopamine on my dat scan was only too evident of this fact.
I think the point I'm trying to get across is similar to that of SA, I wish to keep my drugs to the minimum and I want to be in control of what I put into my body and consider if it is beneficial.
the term 'gimme the drugs' has been used on several posts recently encouraging newly diagnosed pwp to take medication without hesitation. In my opinion this is not sound advice. Anyone entering into any medication regime should be fully aware of any side effects and implications, these are all pretty potent drugs we are taking after all.
BB you also refer to the Apo go pump as resembling a stoma as you care a lot about you're appearance. Please spare a thought for those maybe visiting the forum who have no other option than to use this pump, or indeed a stoma.
I still think if there was a more uniform approach to medication when diagnosed, there may be better results. I don't understand how two people can be diagnosed in different areas with exactly the same symptoms and be given a completely different drug regime, it doesn't make sense.
i was a bit like you hold off on meds when dx ,i could not say whether anybody is better of starting the meds or holding off as long as you can, i think they have done research into this i do remember reading it somewhere ,they have also said dbs can benefit people in early stages this was said not long ago ! well I'm 50 /50 the jurys out ! and as for apo go pump i dont think i would like one either this is mainly why i had dbs but then again i would have took anything the state i was in 3 yrs ago all i know is we are very lucky to have a choice & i do hope this carrys on as we have the best health care in the world !
Reading all of these posts about difficulties with side effects from your meds, and the difficulties that arise when meds need reviewing, and then take a while to stabilise, and the whole on/off bit and the unpredictability and individuality of PD.
Makes me so cross that so many PwP then have to cope with medical staff not following timings when someone with PD is admitted to hospital....
And that for some people other than your PD specialist suggests alterations to your meds.
Tough times that sometimes the medical profession make harder for you!
Just re-motivates me to keep on doing what I can to support PUK/Research and campaigning and getting involved in work to increase awareness of the needs of those with PD with the professionals who support you.
The NHS does do a good job but there are times it wobbles a bit!!!
in my opinion it looks like a stoma so for me it is not an option and i do think about people whom have no choice, that's why i registered on this forum so i can help as much as possible anyone whom is struggling with their condition or dx. i am a member of the gimme the drugs school of thought because i am a lot worse when on no med's people come on here to learn seek advice and help others no one has to take the advice given. i don't like to see anyone suffer from there symptoms when there is help available.
and as a member of this community i have been told by PUK and other members that i am a valued member of this community. i have even given some members whom i have never met my private phone number that is how dedicated i am to help others.
I don't understand how two people can be diagnosed in different areas with exactly the same symptoms and be given a completely different drug regime, it doesn't make sense.
the only people whom can answer this question are the medical professionals.
lower doses do not work for everyone nor do some slow release types like when i was given a slow release pramipexole turn/s out the very ingredient that makes it release slowly i am highly allergic to.and as far as i am aware no one has exactly the same symptoms as one other i for one have developed other symptoms as my condition progresses, like my distonia and double vision.and as i understand it those two symptoms are not particularly common ones.
my symptoms are as follows left sided tremor, stiff and painfully joints left foot drag,requiring the need of a walking stick, double vision, distonia, restless leg syndrome ,slowness of moment, , what i do know is as PD progresses your symptoms can change, mine have, and when i go into an off state i can function but not very well.
bb
as stated on this website homepage,
It's important to remember that everyone's experience of Parkinson's is different. Not everyone will experience all of these symptoms.
The order in which symptoms appear and the way symptoms progress also varies from person to person.
I hope that one day soon the researchers will be able to prove the idea that PD is not 'one type' of condition.
By being able to diagnose Type A PD or Type B PD etc. etc. and that the variations of symptoms that different PwP have is l down to the different strain of PD they have, the drug therapy offerred could be more type specific! But I think there is a lot of work to do to get to that stage of understanding about PD.
All not helpful for now - but some PD consultants may base their choice of drug to use based on small variations of symptoms or combinations of symptoms that PwP present.....
Yes, I do hope research moves in that direction. Without an analysis of types of PD, if a cure is found, it may be like the medications: different from patient to patient, a complete cure for some and not for others.
Just been reading your posts on the distonia. I have read your other posts on various subjects and had always been amazed how cheerful and stoic you have been especially towards other people. So, I was a little sad and blue myself to read about the tough time you are now going through. I really hope that things will settle down and make life more enjoyable for you. You deserve it!
I dont think all this damp, grey wet weather helps either.
Thinking of you and wish I could just grant you one wish. I think I know what that would be.
in your post on the 8th December you say pwp person should alter the amount of drugs they take or stop taking drugs ! then you say Steve ford said pd is a self medicating illness just what i was trying to say so what do you stand by ! just asking lol
Absolutely right Gus, I cocked up. Bit of a stressful week thats my excuse.
Self medicating has been discussed a few times on here and I understand the principle to be this:
There are no simple tests that can measure the level of dopamine available in the body. Unlike diabetics taking insulin we have to make a judgement based on how the timing and size of dose of our medication affects us and then feedback the results to our medical professionals, They can then alter the dosage and timing to suit, however, because of the vagaries of the human body eg digestion,sleep, fatigue etc the affect of pills is variable and there is a need for constant adjustment,,If you adopt an approach that requires permission for every change needed, particularly with timings you would never be off the phone to your dr or nurse.so you need to work with your health professionals to adopt the best strategy.
This may include self adjustment of pill timings or even taking an extra pill in certain conditions, What I would not do is alter doses eg increase or decrease without any discussion nor would I stop taking meds.
Steve Ford's comment was made regarding pwp who go in hospital and lose control of their drug regime.
I'm glad you commented Gus, writing is very difficult to do for anyone let alone pwp. We often make mistakes and require correction and we need to be open minded, educated and prepared to challenge the system to get improvement. It needs a team effort.
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.
That was my knee jerk reaction due to having been a member of this and other forums where you could not make any comment without the rider "please consult a medical professional before making any changes to your medication" I know common sense should prevail and I understand where you are coming from, hopefully my previous post helps
I try hard to think positive but yes its hard. Whenever I get dystonic foot posture I get really angry and fustrated Especially when I have taken a tablet and its taking a long time to work.Icome out with a!ll kinds of words which I wont repeat.. And sometimes end up crying. But sometimes I shut myself in the bedroom because I dont want to upset my family. I am having a week away just after easter and hope my pd wont desrupt it too much. However let us try to think about the good things in life and say to hell with parkinsons.
Apologies for the poor spelling due to my slight dyskensia.
Crystal i do the same i scream and shout at my feet to do as they are bloody well told and the fowl launague i use i only ever say that word out of extream anger or fear i never ever use it willy nilly but that anger only then makes it worse. Cold and stress is what sets mine of and sometimes it just likes to rear its ugly head and bit me on my backside to reamide me it is still there. I have found now mine is getting worse because it has spread its attact to my jaw mine is partically aggressive. The way forward i have found is lie or sit down think postive thoughts and let your meds do there job.
I wish you good luck if you need to talk i will be here for you xxx BB
I know Im not alone in this game but sometimes it helps to express yourself. I hope you are doing ok. People dream of winning the lottery while we dream that a cure will be found. Thanks again for the post. It really does help.
I hate this distonia with a vengeance it is making me angry now.
I really don't know how much more I can take, and the next person who looks a me with an attitude when it kicks in in public, I am likely to go up to them and punch them straight in the face. Once I can walk again that is.
I have had morons pointing at me in the street who were English so it is not as if they did not understand I needed help,and I have even be called a druggie is it any wonder I am angry as hell.
Just goes to show there are more morons out there than we really know.
