Luis, Parkinson's UK Helpline Adviser: On the helpline we are regularly asked 'how long someone has' before Parkinson's becomes very problematic, how long before they reach the 'advanced' stages of Parkinson's. Our answer is generally that it is different from person to person, so very hard to answer. What would your answer be?
Nin: It is very different from patient to patient and varies with the kind of Parkinson's (benign tremulous versus akinetic rigid where people fall a lot), the age of onset (younger onset can be both worse, if idiopathic, or more benign if secondary to certain genes, eg PINK1) and whether patients get dementia early.
I generally say we give most patients a very good 5 years, a more variable 5 to 10 years, and after 10 years it all depends on whether they are unfortunate enough to develop dementia or not.
- See more at: http://www.parkinsons.org.uk/professionals/resources/professionals-qa-managing-stages-parkinsons#sthash.twNjIiot.dpuf
According to this I must be at the end of life stage having been dx over 12 years and having had problematic symptoms before that for 6 years.
That has just scared the hell out of me . Sometimes I think I might be better off not reading posts on the forum .Im not criticising anyone it's just me . I frighten myself . What do they say - a little knowledge can be dangerous . Dementia is my worst fear . I'm glad you are doing well leyther . . I hope I'm like you , I suppose Nins comment is generally based but reading things like that fill me with dread . My daughter is only 13 I've got so much liviing to do yet . How do you cope day to day leyther ?
I can see that the conversation about this callout has moved towards a discussion of the stages of Parkinson's. While staff do work with the production company to give them background on the condition, the documentary aims to focus on the lived experiences of people with the condition. The aim is to tell the story of what key stages of life (having a baby, starting to date again, starting a new job) are like when you have Parkinson's.
I've asked Suma to explain how the stages of Parkinson's are used generally and what this means for you and your condition.
As many of you may well understand, Parkinson’s is a very individual condition and whilst we know it is progressive, the rate at which symptoms change varies greatly from person to person. There are classifications of Parkinson’s according to stages (the American WedMD has some information on this at www.webmd.com/parkinsons-disease/guide/parkinsons-stages) and this can be quite useful in research when trying to group people together within clinical trials but what would be difficult to get from this alone is when someone might move to the next stage and whether they would experience some or all of the symptoms associated with this stage. Therefore from a clinical point of view, it makes more sense to focus on what the person with Parkinson’s is dealing with in their life and manage these issues in the best possible way whilst signposting them to services such as local groups, the Parkinson’s UK helpline or the forum to talk about possible changes with others who can provide the support they might need.
Nin’s response was based on general research findings of that time - we don’t need to tell you that Parkinson’s makes the future hard to predict and so this does not mean that everyone will follow the exact same path. If you do have any specific concerns about your Parkinson’s and how this may progress over time, the best thing to do is speak to your specialist as they are best placed to say how things have changed for you since your diagnosis.
The information regarding the stages of PD warrants a topic on its own if this can be achieved.
Thank you to Ezinda for keeping us on topic.
Ok the PUK want to make a documentary for TV but seem unsure if theyre going to get it on TV. A production company has been employed and Ive been told the BBC are interested.
The overall concept seems to be heading down the usual reality TV route:
Eg cue famous actress voiceover:
Its 4AM and Nigel is struggling to get to the toilet and has to wee in a bucket.
Later Nigel is interviewed by an off camera voice.
Voice: How do you feel about having to wee in a bucket Nigel?
Nigel: Well its better than wetting myself or falling over on the way to the toilet. But it could be worse at least my buckets got a handle.
Etc etc.
If this documentary is being made for TV then I assume its aim is to inform the general public about PD (unless its going to be a highly factual Horizon type feature).
I think the question that ought to have been asked of pwp prior to the recruitment drive is; what do you want to see when you switch on the telly? Do you want to be informed? Do you want the public to be informed and if so, how much do you want them to know about PD? For example how will DA's be covered.
If you want to stimulated public interest; how about using a recent recruit to the PD fold in the shape of Billy Connolly and a World Tour of Parkinson's Disease. Up to now all he's done is take the pish out of hypersexuality and PD drugs. Maybe if he met some of the pwp and saw what their lives entail it would be an education for him and the public.
Oh and I would like to see someone from this forum on TV, I think the members deserve recognition.
I'm not sure what would lead someone to believe that the concept is headed down the reality TV route. This post was designed to do just what you suggest, involve people with Parkinson's. The general approach hasn't been decided yet. This is still a 'potential' TV documentary.
For those who want to chat further about how we involve people with the condition, please contact our user involvement team at [email protected]
How about looking for a new job (unlikely with pd) having a baby (how many must be considering that } and reentering the dating game(with das)
Definitely more Lorraine than Hardtalk.
If you havent decided the general approach and its still only potential why are puk recruiting? why have you hired a production company and why is betty blue speaking to the bbc on puks behalf?
I AM NOT TALKING TO THE BBC ON PUK BEHALF I am talking to Lucy who is part of the team involved in making this potential program.
I really don't understand why you have a issue with this I am more than able of judging as to weather or not this will be negative or positive for ME the one they MAY be filming ( still to be decided ). As I'm sure you can tell from this post I'm getting annoyed now. If you have no interest in this then GIVE IT A REST.
Im sorry you feel this way but you gave me the impression that you were liasing with the BBC from the message you sent replying to my doubts as to whether the programme would get the funding.
You said:
The lady I spoke with at the bbc has a parent with this so there is no doubt in my mind that it will be a genuine report on how this effects me the if is down to the BBC being prepared to come up with the dosh She was on the phone to me for near enough an hour and picked up on when I was upset and showed me genuine concern
Don't worry I will dot all the I's and + all the T"s. BB x
Whether the programme gets made or not it would be nice if pwp were involved in the format and content of the programme.
That is on a general basis the individual participants would be responsible for their own story
That's my opinion. and I will continue to voice it as and when I choose and support others who wish to do the same.
We are all pwp, or carers of pwp. I think what's being expressed here is concern, which seems to have been construed as a criticism, which in my mind is a great pity as some of the comments being made by all contributors to this topic are valid. We are not just people with an illness, we are people who also have to meticulously manage medication, which works better some days than others, some with severe and distressing side effects.
Every day is a struggle with parkinsons, whatever 'stage' you may be at.....in life or with the disease. Life is different, we are different, but we are also human.
I really hope that after gaining an insight into willing potential participants lives, that the programme actually goes ahead and treats all concerned with dignity.
Good luck with the project.
Best wishes
Ali
I'm not sure how the TV peeps will know what the direction and aim of this piece will be until they have a broad spectrum of pwps to research. The key messages I'd want to come out are
PD makes itself known at any age, though there are more older pwp hence the association
PD symptoms vary from person to person as does the treatments offered and effectiveness of these treatments on an hourly basis
Pwp often try to appear unaffected while they're out by timing meds and careful escape home planning. Once home they go from 'nothing wrong with them' to rigid/shakey 'how on Earth do they cope with that' but it's the same person just minutes apart not weeks or months or years.
All drugs have side effects and PD is so bad we're prepared to risk some serious side effects PROVIDED these are clearly communicated.
There is hope, at least for the future but it requires major funding. I'm taking part in a clinical trial right now
You can still enjoy life particularly while the meds are working. I went to my first Glastonbury Festival last week and played golf today. I was frequently OFF meds during both but the look on people's faces if they've seen you transition between both phases and in both directions is priceless. Grandad dancing never looked so cringeworthily (sic) static or active in the space of one song. As for the golf, I have an excuse for the bad shots and enough good ones to stir comments. Complete wreck afterwards naturally.
I've gone quite off on a tangent so if the mods want to move this post feel free.
"Pwp often try to appear unaffected while they're out by timing meds and careful escape home planning. Once home they go from 'nothing wrong with them' to rigid/shakey 'how on Earth do they cope with that' but it's the same person just minutes apart not weeks or months or years."
As the saying goes we are all different, I regularly wear off in public but I know others who are mortified at the thought. I used to encourage them to get over this as I felt they were missing out on life. Experience has taught me this is their way of dealing with pd.
Yes I would want any programme to reflect this diversity but also the role in which drugs, particularly das, play in boosting confidence.
I would be most unhappy if any programme presented DAs as a drug boosting confidence!
It may well do so alongside causing catastrophic impulse control disorders in 1 in 3 patients taking a therapeutic dose...a situation that can and does destroy families and finances!
I may have read it wrong, but I think that's the point Leyther was trying to make. As I see it the extra confidence encourages such behaviour you mention above, without that confidence, it might not be so accessible.
I still,find it hard to believe, that with all of the knowledge available now, that the newly diagnosed are still being encouraged to take DA's as an initial medication. But that's just my opinion.
I hope you are right, Ali, and that Luther was implying the confidence comes with the thrill of the lies and deceit that accompany the deranged behaviour and the denial of any wrongdoing.
I share your concern that newly diagnosed PWP are not always warned and monitored when DAs are prescribed.
I cannot bear to think that other families will face what we have faced.
I take a DA have done for three years and I wish it would give me confidence, instead I get anxious about things and I get very weepy when put on the spot, I would love to join in the tv interview, but find that I will be a complete mess by the time it came for me to speak!
*PD drugs inevitably have an effect on the moods of the person taking them as they mess with the chemistry of the brain.
Feeling good is an important indicator as to how well our medication is working. Flat moods or depression can indicate under medication or a problem that prevents the drugs from working. (Thats how my neuro described it to me)
To be outgoing and active with pd requires a level of confidence. Some people are naturally outgoing, some become so because of the drugs ie their behaviour changes often quite radically; this may not be evident to those taking the drugs. DAs are generally considered to be the drugs that cause the most severe changes.
My experience was that I became much more confident when taking mirapexin, for a number of reasons eg constraints such as guilt and fear disappeared. When sinemet was added I could move better for longer periods and was much more confident about going out in public. DAs make you feel good by altering your mood and by by directing you to things that give you a kick.
Of course, as is well documented on this forum, in the wrong circumstances this can lead to disaster, having terrible impact on families and finances for some people.
However, due to the drug induced feelings of well being it can be extremely difficult to get people to admit there is a problem.
So pwp act in different ways for different reasons
Part or all of of their actions may be drug induced
I would expect any documentary to cover these issues as part of the explanation of behavioural changes due to medication.
