Hello, and a question about support services

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1

Hello, 

My consultant says I have parkinsonism, (the same signs and symptoms as in Parkinson's disease, but caused by something else)  and a few other neuro problems that are caused by the same movement disorder. So it's not PD, but I'm dealing with much the same problems as in young onset PD. 

Parkinson's UK local services have said they aren't funded to work with people who don't have a parkinson's disease diagnosis. I understand why voluntary organisations have to work this way. 

The other conditions that cause parkinsonism affect fewer people and so don't have the funding to provide the kind of support services that parkinson's UK does.

I'd guess lots of people here could have had a long journey to getting diagnosed. People diagnosed with parkinsonism not caused by PD can have to wait further years for a final diagnosis telling them what the cause is. And in that time, when information and support would be useful, there's no voluntary organisation that's funded to work with them. For some conditions there's no voluntary support services.

I'd love to hear of any ideas on ways that people in these kinds of situations can access better support.  

Thanks,

rhubarb

 

 

 

2
Hi rhubarb, thanks for posting on the forum. I'm sorry that nobody replied to you last week.
 
It's hard to answer in full without knowing the specific circumstances but we do offer support to people with parkinsonism. A good place to start is our free Parkinsonism information sheet that tells you more about the different types of parkinsonism and the support available.
 
There are other organisations that support people with some types of parkinsonism - the Multiple System Atrophy Trust, the PSP Association and the National Tremor Foundation. You can find out more from the above information sheet. We also have a page on our website about the types of Parkinson's and parkinsonism.
 
It may be helpful for you to talk this through with somebody on our helpline too. We're on 0808 800 0303 (see www.parkinsons.org.uk/helpline for more info including opening times).
 
Best wishes - and I hope this helps.
 
Sharon
3

Thanks Sharon,

It's parkinsons uk local/regional support services that said they don't ever work with people with parkinsonism from other causes, or even with people who have symptoms and signs of PD before they are diagnosed. 

We know I don't have any of the conditions for which there are voluntary organisations providing support. But even if it had been PSP or MSA etc, the voluntary organisations that work with people with those conditions say that they operate the same way as parkinsons uk. And even after final diagnosis they can't provide the kinds of support that Parkinsons uk does.

I've called the parkinsons uk helpline and they'd nothing to say about it all, just confirmed that local support services aren't funded to work with people in my situation.

I know I'm sounding quite negative here. I understand why voluntary organisations can't work with people who are outside their remit, outside what they are funded for.  But the outcome is that I can't access the only service that might be able to help, because as well as the problems of PD, I've a few extra bits and bobs going wrong.

As well as asking about this for myself, I'm also trying to talk about it as a wider issue - I'm wondering how we can change things to better support people through what is often years, sometimes even decades, of misdiagnosis, and how we can start to support people that have a set of problems to face that don't quite fit , and that current services won't/can't engage with.  I'm not saying this to have a go, or to say the problem of people falling through the gaps is down to Parkinsons UK to fix, just hoping yous could have a think about how we can maybe make things better

 

 

4
 
Parkinson's UK
We offer information and support to people with all forms of parkinsonism.
 
This is on the home page of PDUK so I am unsure why the helpline and the local group couldn't offer some advice.
Could you ask your consultant to be more specific.
If you have pakinsonism, presumably you have one of the conditions on the Parkinsonism info sheet published by PDUK.
I can't say that I am aware if any conditions outside this sheet as being parkinsonian.
The PDUK organisation supports all these conditions although MSA  , benign tremor and progressive supra nuclear palsy have their own support groups as Sharon told you
 The label you have been given is very vague....have you been prescribed a Parkinson's drug to see it it helps your symptoms?
How has the neuro ruled out Parkinson's, PSP , MSA and benign tremor?
What has s/he suggested as the next step to a diagnosis?
I think you deserve some constructive answeres and if I were in your shoes I would be asking for a second opinion.
Good luck.
GG
5

Hi rhubarb, thanks for your reply and for raising these important issues. Would you be interested in talking to Barbara, our Director of Support and Local Groups? She'd love to have a chat with you.

You can contact her directly on 020 7963 9350 or [email protected] to arrange a time to chat, or send me a private forum message with your phone number and I'll pass it on.

Thanks

Sharon

6

Goldengirl

The people on the helpline are lovely but have nothing to say about any of this, other than to confirm that local services funded by parkinsons uk are not available to people in my situation. I don't know how to explain that any better.

I can see why you'd think that only the conditions talked about in the info provided can cause parkinsonism. There's a very long list of conditions that cause parkinsonism. I can see why parkinsons UK doesn't list and explain them all in their publications, because it's a large volume of information. 

As I said, the signs and symptoms rule out some of them, including all the ones for which there are alternative support services. I'm not wanting to go through all my medical details here.

I've been diagnosed with a physically caused progressive movement disorder that causes parkinsonism and other neurological problems. Once it's been accepted that a person has parkinsonism, it can take years to reach a final diagnosis. During that time several different causes of parkinsonism may be given as possible, probable or even definite diagnoses, and then as the condition progresses, the same doctor changes their mind, or another doctor gives a different opinion.  It can take years.

Even then, a decade or more later, the diagnosis may be changed again. This is normal. It happened to relatives of mine. It's likely that they never got an accurate diagnosis.

In some of these conditions they've compared the number found by genetic screening with numbers diagnosed, and found that a significant proportion are dying of the condition without it being diagnosed.

And autopsies of people diagnosed with these conditions has often showed the diagnosis had been wrong, and there was a different cause of parkinsonism.

Some areas of neurology are just difficult.

(At the same time, patience isn't always a good thing - e.g. testing for Wilson's, HIV, and a few other things can save your life and halt progression.

I know you were wanting to help, but the situation is as difficult as I've said it is. That'd be great if you're wanting to work out how we could solve this problem, not just for me, but the wider problem for how people in these situations access support, maybe we could talk some more.

cheers

rhubarb

 

 

 

 

7

Thanks Sharon, I'll give Barbara a call.

I'd still be interested in talking here with people in similar situations, people with experience of working in support services, and just anyone who's interested, in talking through how we could change things so that fewer people fall through the gaps

Thanks

rhubarb

8

Hi

Parkinson's UK has  what's called a 'Memorandum of Association' that sets out what we can and can't do as an organisation.  It says... "The primary object for which the Society is established is the relief of persons suffering from the condition known as 'Parkinson's Disease' and allied diseases, (together hereinafter called Parkinson's Disease) and the promotion of research into the causes, prevention and cure of Parkinson's Disease and the dissemination of the results of the research for the benefit of the public."

So, I think, once you can get past the legal language of the document it is reasonable to assume that 'allied diseases' includes Parkinsonisms and there is no specific list of conditions that are considered either 'in' or 'out'.

In the light of that, it's not surprising that there is a level of confusion for local groups. We are also clear that people with Parkinson's do not have to be a member of Parkinson's UK to access our services, but we know that some groups might make that distinction. My experience is that local groups tend to be inclusive rather than exclusive and if they can offer support, they will.  The fact that many people struggle to get a meaningful or clear diagnosis is a common experience which also results generally in support being offered rather than denied. 

I do think it's important that we encourage people to access specialist support and guidance where it is available, such as through the charities for PSP and MSA but that shouldn't stop people also benefiting from support from a local group or from services provided by Parkinson's UK.

It will be interesting to see if the issue comes up in the next few months as we involve local groups in discussions about the future shape of our work at a local level.

9

Hello Barbara,

Thanks that's really helpful to hear that's the position. The information for the public on the website and the memorandum of association are saying the service should be or is inclusive, but on the ground in practical terms the services provided are exclusive, and local support workers, regional managers and the helpline all, (or all the ones I've asked), believe this is parkinson's uk policy.

Would someone be able to make sure it's discussed and settled, so that everyone working for you knows where they are with it, and then let us know the outcome?

Thanks,

rhubarb

10

Hi

I think it will be good to have that discussion in the context of finalising the strategy for Parkinson's (2015-2019) over the next few months rather than as something that we try to determine separately.  We need to put it in the context of the support and services we offer. 

I'll make sure the issue is raised in the work to develop our information and support services for the future and we can clarify the position for staff.  I'm sure you can appreciate that ensuring everyone is on message across 400+ groups and a range of networks is quite a challenge but again our development projects provide opportunities to re-set the thinking on this and a range of other issues, so I'm hopeful we can make some good progress.

B

11

Thanks that's good to know it will be discussed.  When would we be able to hear back about what's been decided?

Only looking at it from the outside - if the memorandum of association legal stuff,  and the website are saying that parkinsons UK provides support service to people with parkinsonism from other causes, then it sounds like there'd maybe be a bit of a responsibility to service users and fundraisers and people giving donations, to go with that now. And again, only looking from the outside, it sounds possible to send a short email out to parkinson's UK employees to say that there has been some confusion, but that parkinsons uk employees should be willing to communicate with and provide support services to people with parkinsonism from other causes until/unless that position (and the legal stuff) changes in 2015 as a result of the discussions you're about to have.

But I can see how deciding which services to provide to people living with delayed diagnosis, could be more complex.

I know I could be sounding a bit pushy here - for big organisations with a lot to deal with, next year can sound quite soon,        for potential service users with too much to deal with, next year can be a long time.

12

I don't mind you being pushy.  I do a weekly email to my managers across the UK - I'll raise the issue with them this week to get a sense of how much of an issue this is and the best way for making any changes that might be needed.

B

13

I do find this thread confusing.

My knowledge if Parkinsons disease is limited but I struggle to understand what Parkinsonism, with "signs and symptoms similar to Parkinsons Disease but caused by something else" means, as no one knows what causes Parkinsons Disease do they?

Are you saying if it walk like a duck and quacks like a duck it may be a squirrel?

I understand the distinction between vascular Parkinsons, MSA  essential tremor etc which are included in PDUK literature, but what are these other conditions and how do we know if we have Parkinsons or one of these other  diseases?

Do they have names and how do they get diagnosed?

I want to expand my understanding but am thrashing about in the dark and wondering if my husband may have been misdiagnosed.

Could someone from PDUK explain?

Thanks

GG

 

14

Hello GG

I know you wanted someone from PDUK to talk about this, but since I'm causing the confusion, and because you brought up lots of useful questions,  I'll have a go too

I'm concerned about how people get the information they need to enable accurate diagnosis, without causing more stress to people who have PD and already have a lot to deal with and don't need more worry

Yes it gets confusing when we talk about a condition "causing" a group of signs and symptoms, but we don't even know the thing that causes the condition. My memory is crappy but I think medics use "aetiology" to mean the cause of a condition - as in cystic fibrosis has a genetic cause/aetiology. So we don't fully understand the cause or aetiology of PD. But we know (or think we know) it must be different from that of the other conditions resulting in signs and symptoms of parkinsonism.

"Parkinsonism" describes the well known group of signs and symptoms that occur in Parkinson's Disease,  but also occur in lots of other conditions. There's a wiki page on "parkinsonism" that probably says it more clearly than I have, and lists (just some of) the conditions that cause parkinsonism.

I know it'll be a small proportion of people diagnosed with PD who have something else causing the parkinsonism signs and symptoms. There doesn't seem to be many shortcuts. Often we can only go with what signs and symptoms come up over time. Unless something comes up that doesn't fit PD, - (an unusual response to treatment, a neurological symptom that doesn't occur in PD, rapid progression etc) they won't go searching for other causes. There aren't tests or accurate tests for every condition that causes parkinsonism. tests cost so they don't give these tests to everyone with parkinsonism, most of whom will have PD. (the exception is or should be Wilsons, because tho its rare, treatment saves lives and can stop progression)

tho it'll be a small proportion of people with a PD diagnosis that have parkinsonism from another cause, it can be an awful situation for them - it was for my relatives.   A lot of people with neurological conditions, have to be very actively involved in the process of diagnosis. So for the people in this situation, it's useful to know a bit more. But how do we do that without stressing out the majority of people who have a diagnosis of PD that is accurate, and who might already be struggling to get their head round all the new words for all the symptoms and treatments etc?  

from where I'm standing,a bit  more information, as simply put as possible would be useful

you've educated yourself a lot about PD, so you and your husband would, over time, be likely to notice if something (neurological) was going on that really didn't fit what you know of PD either from the neurologists idea of PD, or from what other people with PD experience.  And if it was me, at that point I'd  read around some more, and ask my GP and consultant about it. I'm sorry if this has caused you worry

all best

rhubarb

15

Thanks Barbara,

I'm not meaning to be rude here, it's just that looking at how hard it's been to communicate about what the issue is,  my guess is that you might get the answer back that there's no issue. But we know there has been

rhubarb

 

16

GG

meant to answer this too - you said

"Are you saying if it walk like a duck and quacks like a duck it may be a squirrel?"

-   its lots of kinds of ducks, they all walk and quack like ducks do, but a little differently from each other, and they all have different coloured feathers.  PD could be a mallard? big grin

 

 

 

17

 

 

Hi All,

I cannot really see why PD UK cannot support people with parkinsonism .  It seems to me  quite like denying people missing limbs  support because they were not born like that or lost their limb the "wrong" way.  At the risk , as rhubarb points out,   of  giving  more information that some need for their peace of mind,  I would point out that anything up to 25% of PWP's after death have been found not to have had PD at all, presumably something rather similar or someone would have twigged.    It would I suppose be different if the parkinsonism was due to,, e.g. drugs used for mental conditions where the parkinsonism will go away once the drug is withdrawn.  My trustee PD guide says that "The illnesses that resemble PD are individually rare but together may make up 20% of all cases of parkinsonism"  

 

Best wishes to all

 

 

  

 

 

.  . 

18

Hi goldengirl,

This is a really complex question so we thought it better to have a health professionals answer it. We’ve managed to speak to Nin Bajaj, one of our clinical experts, about parkinsonism – here’s his response:

Parkinson’s is diagnosed when a patient has a typical history.  Generally the onset is in late adulthood (although we obviously see many younger cases).  It often starts as a tremor in one hand and the person may have a few falls in the first few years (although these can become a later feature).  Usually there is no evidence of severe memory problems or hallucinations at the start or swallowing or early speech problems.  Alongside this, the person’s history fulfils the Parkinson's UK Brain Bank Criteria.

When a patient has an atypical history and/or does not fulfil the brain bank criteria but has some clinical features that can be seen in Parkinson’s (e.g. slowness of movement, tremor, falls) we use the term parkinsonism. Some of these patients do later develop the full blown features of Parkinson’s and go on to fulfil the brain bank criteria. Some never do and alternative diagnoses are finally made such as:

  • Multiple System Atrophy (where autonomic symptoms predominate such as blackouts; there may be balance issues and there is generally a poor response to levodopa medication)
  • Progressive Supranuclear gaze Palsy (with this, stiffness is usually symmetrical and affecting the trunk rather than the limbs; there may also be a history of early falls.  Other symptoms include changes in eye movements, swallowing issues and sometimes changes in behaviour)
  • Vascular parkinsonism (predominately this affects the lower body with changes in walking)
  • Benign tremor (in this, tremor predominates compared to bradykinesia; DaTSCAN imaging would be negative).

These alternative diagnoses might be made on clinical grounds and/or informed by tests such as neuroimaging, autonomic function testing and response to levodopa medication.

If you want to find out more, have a look at our information sheet on Parkinsonism.

Thanks,

Ezinda

19

 

I think this is all terribly Confusing.

There is too much 'Fit' and 'atypical' and 'usually'

Simplify it for the sanity of Humanity Please

Reading it All and I struggle too read and comprehend as i once did (That's part of my symptoms along with memory) There must soon be sub divisions of the illness, this illness, a illness.

We cannot all tick a box

I became ill, it has developed, it is developing, I feel rubbish.

If the expert turned around and said 'the diagnosis is just a tremor' or 'psychogenic' I'd think myself sane and the expert Insane.

20

Hi sea angler

Unfortunately, it is not a simple issue. Do read the Parkinsonism information sheet. This explains helps to explain  in very accessible terms. 

Thanks,

Ezinda