Has anyone thought of cause?


#1

Hi, I'm new here. I've been diagnosed with lupus SLE (an autoimmune disease) in 2012 and since then I struggled to get it it under control with the various medications prescribed for it. A year ago I was moved from one drug to another and the latter, although taken only for a month a low dose, somehow affected my brain. By that I mean I got all kind of twitches on/off, my left eyelid isn't opening at the same time as the right and I get this feeling that my upper body is moving like a pendulum but nothing is really visible on the outside.

After many consultations with different specialisations, I managed to see a movement disorder specialist who noticed that my right arm swing is non-existent and sent me to a DaT scan, which I had yesterday. The proposed diagnostic is early PD or lupus Parkinsonism. I'm still convinced that the drug caused this but it has been already a year and the neuro said that the effects should have improved by now, given that I stopped it.

Now - although autoimmunity has some genetic link to family, I hasten to add that I have no one in my family with that. I have an aunt that has PD but thats it. 

While I as going through the nightmare of adjusting to the awful disease that is lupus and whilst trying to now get my head around the fact that I may have PD, my husband started to get cramps in his legs. Then fatigue. Then some cognitive impairment. I've noticed that at one point he got annoyed with something and his right hand was shaking. Then he started acting out his dreams, which is heart wrenching, I promise you. I've read that the acting out of dreams is usually a predictor for PD or multi system atrophy, so I'm now freaked out that not only I managed to be ill, somehow he is too.

My question, after all that intro, is this: have you attributed your PD to a particular cause? The reason I ask is that it seems far too coincidental that 2 people with no family history of autoimmunity and PD could simultaneously develop them, particularly the PD.

I understand that one of the causes is farm pesticides. We live next to a farm and I'm wondering whether they have not somehow contaminated the water. 

Do any of you with PD live next to farms, for example?

Many thanks.

 


#2

Hi 

Sorry to hear of your troubles, yes I have thought of cause quite a lot but don't come up with anything. I do have an auto immune condition though which was diagnosed after my PD.  Systemic Mastosytosis not sure if that is the correct spelling but doesn't seem to be any trouble to me at the moment, seems it is quite rare so not a lot of info.   Hope things get sorted out for you and your husband.

regards Sugarplum


#3

I am so sorry to read about your problems. Cannot really help but . . .

I am always amazed at the lack of interest in finding causes for diseases.

I was diagnosed with non-hodgkins lymphoma in 1996, had a year of chemotherapy followed by two years of various drugs to boost my immune system. Been in remission ever since, thank goodness! . Nobody ever asked about my work or lifestyle. I have always wondered if exposure to chemicals could have caused that.

Recently I asked my Parkinson nurse about possible links between those chemo drugs and my neurological symptoms. My oncology consultant followed this up, and found no links. But, there is no mechanism for gathering long term data, so this is pretty meaningless.

Rant over.

Best wishes to you and your husband and hope you both find the support you need.

S


#4

 

I worked on a farm for 9 yrs.

Nearly everything on the farm was chemical intensive. One of the main crops on the farm is/was potatoes.


In the autumn we'd process seed potatoes they were sprayed with chemicals as they were graded into different grades of sizes and then trayed up too be stored over winter when 'chitting' took place and then brought out again in the spring ready for planting.

More chemicals(powdered) were added as they went through the planting machine and into the ground, as they grow yet more chemical applications in regards too pesticides and herbicides, if they were main crop potaoes  beyond new and first crop, then neat sulphuric acid was applied too the potatoes to set the skins and grade size a common practice.

One of my jobs on the farm was going around the farm spraying off Potatoe dumps, that is those that dont meet the grade wish for by supermarkets, deformed or damged graded out, they grow and i's spray them off with a knap sack sprayer too keep cross contamination disease risk down around the farm.

Being the 1980's  there wasn't such a thing as health n saftey in those days or PPE Personal saftey gear, it was a case of get on with it or someone else will while you look for another Job, I was not the only one on the Farm it employed quite a few other local people, all involved with chemical intensive Farming, if the farm spent 3 million quid on chemicals they got a high tech self propelled sprayer.

Of those i worked with perhaps 15 people all handling chemicals I can think of at least 9 who have since died of Cancer including my sister at 31 yrs old and I have parkinsons. As Supa says No meaningful research but they Why would there be?? Chemical Companies producing Agricultural products are the biggest in the World alongside the Same Companies that Produce our Pills one and the same. It would be a scandal and bad for Business, the ordinary man has no value if he isn't using one as a result of the other.


#5

I was just wondering if there are more people with PD living in rural areas, than towns and cities? Has any research been done on this?

I also live in a small rural village, with fields and crops all around. Two years before I was diagnosed, my next door neighbour was told that she had Parkinson's.

Makes you think, doesn't it?


#6

Purpletop - what do you men by 'actingout dreams'... is this whilst asleep or fully conscious ...I've never heard of this !


Twinks - That is a really good question as to whether there is any info on Rural PD versus Urban PD .   I was brought up in Lincs where I would  have been more exposed to Pesticides (and other stuff I think) than if I had been in a NON farming area.   I did a quick search on the web and noticed this survey from Finland which suggests that there is a rural bias (and Male) but I dont know if there's been a lot of research.  Perhps someone from Parkinsons UK would know ?


                                http://www.ncbi.nlm.nih.gov/pubmed/9932948


ANDY (Ojalahey)


#7

 

'Acting out dreams' ~ vivid violent dreaming Andy.


I have suffered with this well before i was aware i was ill or aware i was ill with Parkinsons,before i was aware i began too think i was sufferring with some form of PTSD because it was there all the time, every time my mind would drift off or close my eyes or sleep.


When things eventually started too fall in place i learnt it was a symptom of Parkinsons and i learnt too tame those demons although they are still there in my sleep i can put them away, it's supposed too be a sleep disorder and sleeping problems are another feature of parkinsons.


#8

"PD affects about 50 percent more men than women, and the reasons for this discrepancy are unclear.  While PD occurs in people throughout the world, a number of studies have found a higher incidence in developed countries.  Other studies have found an increased risk in people who live in rural areas with increased pesticide use.  However, those apparent risks are not fully characterized.

One clear risk factor for PD is age.  The average age of onset is 60 years, and the incidence rises significantly with advancing age.  However, about 5 to 10 percent of people with PD have "early-onset" disease that begins before the age of 50.   Some early-onset cases are linked to specific gene mutations such as parkin.  People with one or more close relatives who have PD have an increased risk of developing the disease themselves, but the total risk is still about 2 to 5 percent unless the family has a known gene mutation for the disease.  An estimated 15 to 25 percent of people with PD have a known relative with the disease.

In very rare cases, parkinsonian symptoms may appear in people before the age of 20.   This condition is called juvenile parkinsonism.  It often begins with dystonia and bradykinesia, and the symptoms often improve with levodopa medication."

 

Found the above on a website.

Like you, Andy, I lived in N. Lincs for 17yrs., in a rural village. In fact all my life has been spent in the countryside, surrounded by fields and farms!

I wonder how many farmers have PD? I know at least one.

 


#9

There was an article about this in the research magazine a couple of years ago. The analysis of patterns of disease in the general population in an attempt to establish a cause is called epidemiology. The analysis of a complex condition like Parkinson's is very difficult and would have to involve studying a large number of people over a long period of time to come up with a meaningful result.


#10

Just type "epidemiology" in the forum search box.


#11

Andy, our sleep has 3 phases, as you know. During the REM phase (I.e. when we dream), a healthy brain paralyses the muscles (other than the autonomic system, of course, I.e. the one controlling heartbeat, temperature, etc) so although the dreams are vivid and we see ourselves in them, we don't actually move. In PD and multi system atrophy, for example, the brain fails to paralyse the muscles so one can end up shouting, crying, laughing but also gesticulating, which could cause harm to both the person dreaming but also the bed partner. 

One of those things that lovely PD causes :(.


#12

Thank you everyone for your valuable input. I've always been a townie before marrying my husband but he loves the countryside so here we are, in the middle of it. His argument had always been that towns are full of fumes and dirt, and that it has got to be healthier out of them. 

Today I had a drop in blood pressure that scared me, something I haven't experienced before. I understand that it is a symptom of PD and autonomic dysfunction due to it. At the same time my left jaw started shaking for a few seconds - again, I've never had this before. It's frightening. The speed with which these symptoms appear scares me. 

i look around and see my friends and family enjoying life, laughing, cursing for some trivial reason and I can't help myself from asking how did this happen?? 

Anyway - I'm sure you all know how it feels. Thank you for responding.


#13

Hi Purpletop and everyone ,

Not long ago I filled in a survey about Inpesticide' /Chemicals relating to Parkinson's .There is a lot of research ongoing with this topic .

Another thought some PWP have is could head trauma be connected to PD . Head injuries causing loss of consciousness or concussion .

Having no history in my family of PD , that I know of , brought by the sea and having many blows to my head ( I was in an abusive relationship in my 20's )  is this theory possible .

                     Chrissie


#14

Hello

I'm interested in the pesticides too, as one of the things that trigger the inflammation causing PD.

They can work with/cause synergistic damage with another chemical, lipopolysaccharides (LPS, or endotoxin) that's made by some kinds of bacteria.

In the horrible experiments they do to "model" PD, they put one dose of  lipopolysaccaride into the brains of animals. It triggers inflammation that is self perpetuating, like a slow smouldering fire, in the same types of cells and the same areas of the brain as in parkinson's,  and causes progressive disabilities in the animal that are similar to parkinson's.

Lipopolysaccharide is made in the walls of gram negative bacteria, like salmonella and the one that causes meningococcal meningitis. (Most bacteria we have in us, or get infected by, don't make LPS)

I've not come across anything saying that having salmonella infection in the digestive system is a risk for parkinsons. I think it's a problem when you get it into your bloodstream, and if it then crosses into the fluid that's around the brain. 

There was a researcher who got accidentally injected with LPS from Salmonella and she got parkinsonism from this. I think she's called Ines Niehaus. She's carried on doing research and has been writing about LPS and PD.   

The thing about head injury and risk of PD is interesting. Head injury, LPS and pesticides are three of the things that can make the barrier between the blood and the fluid round the brain more permeable.

I think LPS can also be produced by some bacteria inside us if we get the wrong bugs growing too well in our digestive system, and then the gut wall gets more permeable. 

There's researchers saying that having overgrowth of bad bugs in our digestive tract is one cause of parkinsons.

Pesticides are one of the many things that can help mess up your immune system so that you get the wrong bugs growing in your digestive system.

and pesticides work with LPS to trigger that self perpetuating inflammation in the parts of the brain involved in parkinsons.

 

I agree with what several people here said - that this is like with the tobacco companies.

Maybe it's worse in some ways. It's always been much the same companies that make pesticides and pharmaceuticals. 

And even where it's not been the same individual company selling us both the harm and the medicine, it's the same people and organisations who have their money invested in all these companies.

I think these things work against us getting answers and the changes we need to prevent harm to others in the future.

1) The funding and publishing of research into both the safety of pesticides,

2) The funding decisions and publishing of research into the causes and treatment of PD.

3) which treatments and what information ever reach the NHS, their approved charities, and our doctors

4) the political decisions taken on regulation of pesticide use, 

are all influenced by the money these companies have, their lobbying power, and our political system that allows our MPs and unelected Lords n Ladies to directly personally profit from these companies doing well.

Could make you feel hopeless on a bad day. Just have to keep self educatin, as much as we can

my cognitive ability and use of words is gone a bit downhill -  if anyone comes across sites looking at this kind of stuff, and translating the science into plain words, I'd be really glad if you could post them up here

rhubarb x

 

 

 


#15

 

Hello again

Just re read this thread when I was a bit more awake -

Purpletop – so sorry you are both coping with all of this. That's so hard.

Purpletop and Sea angler and Twinks and Ojalahey/Andy – so interesting to hear your stories about how you could have, or definitely got exposed to pesticides.

In my twenties I lived on a farm where, like Linconshire, it was all intensive arable farming. We had local groundwater and it was bad enough to be condemned/illegal for years before it was changed over to mains. I was drinking it because I didn't know.

I got drenched with the sprays sometimes and there was no way to wash it off all day.  The sprays they used in our area at that time were ones that had been banned in america. 

I had friends there who had cancer. One told me that the doctors and nurses in the cancer unit at the hospital said they knew our area was bad for some kinds of cancer and they, (the nurses and doctors), believed it was the pesticides used there, but they had no evidence beyond their experience.

Cheers Andy for the link to the finnish study.  

Chrissie  - i knew people who've had PD or parkinsonism and had head injury  from sports concussions. I worked in women's aid a long time back, and I've wondered if it's more frequent in people who'd survived physical abusive relationships.

for myself it's hard to look back not knowing what the causes of this are, and cope with what's coming probably without ever knowing. i guess that's what most people need, to want to make sense of things, to have a story that makes sense of what's happened and what's coming.  

Sea Angler – sorry I was rantin about the companies that make both the pesticides and the pharmaceuticals, as if this was new info, when you'd already said all this.  Brain wasn't in gear. Sometimes when I'm a bit slow, my brain is on transmit but not receive.

From (dodgy) memory I think  ALS/motor neurone disease is more common in rural areas too, and more common in men,  and it can come with parkinsonism. 

I've started getting the acting out yer dreams /REM sleep behaviour thing. Bit freaked some mornings when I see what weirdness I been dreaming about by the chaos around the house, or what my fella says I been up to in the night. Not great starting yer day like that!

more focus on causes would help me cope. to know that in the future we could change how we do things so less people would be living with this, would make it easier

rhubarb x