Advice on Parkinson Disease

[stressedoutmum]

Am absolutely gutted - for 2 years we've been told that dad had a stroke. Now after a brain scan he has been diagnosed with Parkinsons and they dont think hes ever had a stroke. Its only within the last 6 months that he's had any physio. His physio noticed he had shaking when he tried to stand, he also clenches his fists when he gets up. His physio advised that some stroke patients have a 'parkinson style shake' but its not parkinson and that there was a tablet that may help this. After referring him back to his doctor he was given a brain scan and today we were told he has parkinsons. He is quite weak, gets very very tired and has this shaking only when he gets up - but he has his full marbles. This has gone for almost 2 years undiagnosed and thankfully his condition does not seem to have deteriorated during this time. He will be put on medication which can make him feel quite nauseaus but could help. Wheres the best place for advice and I am now really worried about his future as my friends dad had Parkinson's really really badly.

[Ted_Hutchinson]

MEDLINEplus: Parkinson's Disease (http://www.nlm.nih.gov/medlineplus/parkinsonsdisease.html)
Parkinson's Disease Society (http://www.parkinsons.org.uk/)
Parkinson's disease - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Parkinson%27s_disease)

For Natural Prescriptions For Parkinson's Disease (http://www.lef.org/magazine/mag2004/jun2004_report_parkinsons_01.htm)
BBC NEWS | Health | Exercise may ward off Parkinson's (http://news.bbc.co.uk/1/hi/health/3944487.stm)
40265 Parkinson Exercise Book (http://www.parkinsons.org.nz/books/exercise%20booklet.pdf)

Parkinson’s Disease May Cause Apathy (http://www.medpagetoday.com/Neurology/ParkinsonsDisease/dh/3702)

[Ted_Hutchinson]

NICE Guideline for Diagnosis and Management of Parkinson’s Disease (http://www.parkinsons.org.uk/Templates/Internal.asp?NodeID=89707)

EPDA: Patient Guide to Living With Parkinson's Disease (http://www.epda.eu.com/patientGuide/HE_0_contentsPage.shtm)

[pavlovs_dog]

my nan is in a similar boat. has had various symptoms for ages, without really being 'ill'

it seems like we are finally getting closer to finally finding out whats wrong. we're waiting on test results but it seems quite likely that it is parkinsons.

like your dad, my nan has all her marbles/faculties, its just the physical side that lets her down - the shakes (combined with oesteoperosis, arthritis and athsma).

part of me is terrified that it is parkinsons - having seen what its done to people like muhammed ali and michael j fox, and it breaks my heart to think of my nanna suffering like that. but the other half of me thinks that at least if we know what it is, we can treat it, and make the most of every second we have left.

stressedoutmum, you are more than welcome to PM me if you want a friendly ear :grouphug:

[pavlovs_dog]

well we've had news back this week, and it is the start of parkinsons. she's currently undergoing further tests so they can decide on the best course of treatment :cool:

[kittie]

http://news.bbc.co.uk/1/hi/health/7666749.stm

[Ted_Hutchinson]

Vitamin D and Parkinson's disease--a hypothesis. (http://www.ncbi.nlm.nih.gov/pubmed/17230473)

In an excellent paper, (http://www.vitamindcouncil.org/newsletter/2007-feb.shtml)Dr's. Harold and Jonathan Newmark (father and son), present the considerable evidence that vitamin D deficiency is one cause, perhaps the major cause, of Parkinson's disease (Muhammad Ali has this disease and, in his case, it may have been caused by boxing. However, a lot of boxers never get Parkinson's disease, and most people who have Parkinson's disease never boxed). Drs. Newmark remark on a 1997 case report in which a patient with Parkinson's disease steadily improved when treated with 4,000 IU daily. However, their recommendation for an interventional study using only 2,000 IU daily in Parkinsonian patients is regrettable. Such a low dose in such a severe disease may tragically miss a treatment effect and would only have to be repeated in the future with physiological amounts of vitamin D. All clinical interventional studies—in any disease—should use enough vitamin D to obtain and then maintain blood levels at levels obtained from natural summertime sun exposure (at least 50 ng/mL). For many people, the aged, African Americans, and the obese, this require 5,000 IU daily. If you know Muhammad Ali, or anyone with Parkinson's disease, suggest they start taking 5,000 IU a day. (https://secure.bio-tech-pharm.com/detail.aspx?product_id=18&cat_id=2&subcat_id=0) If they or their doctor are concerned about toxicity, have them read the literature. If they can't do that, have the doctor measure their 25(OH)D and calcium levels every four months. Both patient and doctor will soon realize that 5,000 IU is a physiological dose.

[Ted_Hutchinson]

Parkinson's disease and vitamin D (http://www.nhs.uk/news/2008/10October/Pages/VitaminDandParkinson'sdisease.aspx) NHS CHOICES article on the subject.

[klairbear]

we had the same issue with my mum. she was finely diagnosed with parkinsons after having a second suspected stroke.

what i found frustrating was when we first got the diagnosis there was no time to ask questions, and when we asked for leaflets and information the doctor said they didn't have any. i have had to do my own research, having to go through all the fears and possible misconceptions about the condition.

the above links are really appreciated, so thank you :A

[stressedoutmum]

thanks for that Ted - will pass info onto my mum - you never know. Anything that helps.

[Ted_Hutchinson]

Also consider Neuroprotective and disease-modifying effects of the ketogenic diet (http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16940764)
I don't have to remind you I've benefited from a change of diet recently. (http://blogg.passagen.se/dahlqvistannika/?anchor=my_lowcarb_dietary_programe_in) and that is very mildly ketogenic. (well I bought some ketostix and I only managed to get a trace or at best moderate colour) If you went more for Atkins induction (tried a bit harder to lower carbs than I have done) you may obtain slightly darker tones on the test strip.

Learning more about how the brain functions and what is the ideal diet for brain function from Dr McCleary (http://www.drmccleary.com/2007/10/17/SuzanneCraftGaryTaubesAndYourBrain.aspx) may help you make better choices. I found his book very helpful. He's a great guy, the sort you can email AND get a reply from so if when you've read his website through you still have concerns then don't be afraid to email him. He really is a great guy.

[Skint_Catt]

:hello: Hi, my dad has been diagnosed with Parkinsons since late 2001. It started off as a slight tremor in his right hand and has got progressively worse over the last 7 years (especially the last two).

He is still 'all there' and potters round the house and garden perfectly well (still prunes/mows the grass etc just takes him longer), though he does struggle to write (Parkinsons also causes stiffness - unfortuantely mainly in his right arm/hand) and shuffles when he walks. He is also stooped when walking/standing though Mum does remind him to straighten up! I think his meds have been upgraded four times in 7 years. I don't think they make him nauseaous but they do make him tired and I think he has a short nap in the late afternoon.

Mum recently started him drinking Whey after reading a newspaper article (bodybuilders section of Holland and Barrett - fruit punch flavour but only half recommended for bodybuilders!) and its improved his strength without doubt - he can get up off the chair/bed now without 'bouncing' his way up, can walk straighter and lifts his feet rather than shuffles, and gives my boyf a hell of a handshake ;) :rotfl: I'm not suggesting it but it worked for Dad. They haven't contacted any support groups (they're just not that sort of people) but have just applied for Attendance Allowance, and may apply for Carers next year as Mum may need to give up work to look after him and make some changes to the house (walk in bath/shower etc)

C xx

[Ted_Hutchinson]

Low LDL cholesterol and increased risk of Parkinson's disease (http://www.ncbi.nlm.nih.gov/pubmed/18381649) Interesting reading for all those glugging down statins.

[Ted_Hutchinson]

Mike Adams on the same story (http://www.naturalnews.com/024506.html)

[moneysaving pharmacist]

Ted, is there any disease that you cannot link with vitamin D deficiency? I can think of a reason someone with parkinson's would have lower vitamin D levels than a healthy person - they are less likely to go out and be exposed to sunlight. And you should know that correlation doesn't equal causation.

Also Ted, did you read to the bottom of the NHS choices article? I'll copy and paste for you in case you didn't:

This study takes a snapshot of vitamin D levels in different groups of older adults who had either Alzheimer’s disease and Parkinson’s disease, or were generally healthy. There are some limitations to note:
An association between two factors (in this case vitamin D levels and Parkinson’s disease) at one point in time cannot prove that one factor caused the other.
This type of study cannot establish whether people in this study had low vitamin D levels before they developed Parkinson’s disease, or whether their levels of vitamin D dropped after they developed Parkinson’s disease. The authors acknowledge that the latter may be possible, as patients with Parkinson’s may have decreased activity levels and less sun exposure.
Patients with neurodegenerative diseases such as Parkinson’s and Alzheimer’s disease may have other risk factors for vitamin D deficiency, such as a life indoors, lack of dietary sources of the vitamin, renal impairment, several social and economic variables, or taking medications that affect vitamin D absorption or metabolism. The researchers were unable to take these into account in their analysis as the original database did not record this type of detail.
The majority of people in this study were white, and lived in southern latitudes of the USA (all participants lived south of 39°N). The results may not be representative of people from different ethnic backgrounds or living in different regions.
The proportion of blood samples taken in different seasons differed across the groups. This may have affected results. However, if this was a problem it should have reduced the difference seen between the Parkinson’s and healthy groups.

I'm also amazed that someone can claim that parkinson's disease and alzheimer's are entirely preventable through nutrition.

The cholesterol link is again an association - it doesn't prove anything, but it can point us in a direction for further investigation. I would like to know why it took them seven years to get the paper published.

There are several different groups of drugs available to treat parkinson's, all of which increase the levels of dopamine in the brain. They are available as a range of different formulations, including dispersible tablets, slow release capsules and patches. Increasing dopamine levels can also make people feel nauseous, which can be treated.

The best place for advice about parkinson's would be your GP, consultant or specialist nurse - they should have plenty of literature they can give you. Your pharmacist should also be able to help.

[Ted_Hutchinson]

Ted, is there any disease that you cannot link with vitamin D deficiency? As you are fully aware there are over 900+different tissues in the body with Vitamin D receptors. These receptors perform over 200+ different gene reactions. There are therefore thousands of different conditions that will arise because of our failure to attain and maintain the natural level of Vitamin D status our bodies strive to achieve when our skin has access to direct sunlight.

You know as well as I do that our muscle fibres and our brain neurons are powered by Calcium and Magnesium. Calcium tenses our muscle fibres and magnesium relaxes, Calcium excites our neurones and magnesium calms them. I am sure we all know that 80nmol/l Vitamin D is needed to optimise the uptake of calcium and magnesium is absorption is also governed by D status.

Now look at the monthly pattern of Vitamin D status for the average UK adult (http://www.ajcn.org/cgi/content/full/85/3/860) and explain to me which month of the year is the basic requirement for Vitamin D status necessary for optimum calcium absorption met in full?

can think of a reason someone with parkinson's would have lower vitamin D levels than a healthy person - they are less likely to go out and be exposed to sunlight. Perhaps if you read the full text of Vitamin D and neurocognitive dysfunction: Preventing “D”ecline? (http://www.ncbi.nlm.nih.gov/pubmed/18579197) you would better understand the many roles of vitamin D in the brain.

And you should know that correlation doesn't equal causation.But common sense should be sufficient to inform us that if a certain substance is fundamental to the way our brains cope with inflammation and neurotoxicity then a shortage of that substance will not help optimum brain function.

Also Ted, did you read to the bottom of the NHS choices article? I'll copy and paste for you in case you didn't:Who posted the first link to Parkinson's disease and vitamin D NHS CHOICES article on the subject. in message 8 of this thread. And those readers who followed the link will see that my comment on that article was accepted by the NHS as valid and reasonable and is there for all to see. I don't see your contribution to that discussion?


I'm also amazed that someone can claim that parkinson's disease and alzheimer's are entirely preventable through nutrition. So would I be. I have NEVER EVER said that Parkinsons and Alzheimer's are entirely preventable through nutrition. Nor am I aware of anyone who had ever made that ridiculous suggestion. If you are implying that I have perhaps you could post a link the occasion. Even when blind drunk or manically high I doubt I would be so idiotic. Only someone totally ignorant of Vitamin D synthesis would consider nutrition as a major source of Vitamin D.

The cholesterol link is again an association - it doesn't prove anything, but it can point us in a direction for further investigation. I would like to know why it took them seven years to get the paper published. You clearly do not understand that the journals that published research are dependent on advertising nor where the major source of advertising is derived from.

If anyone wants a short summary of each of the sections of the Jennifer S. Buella and Bess Dawson-Hughes article I linked to above please PM me. Obviously for copyright reasons I cannot send you the full text but I am happy to give you a more detailed summary of each of the sections than would be appropriate here. I find trying to convert scientific language to a level more intelligible to the average reader is useful to me as it consolidates my understanding of what I have just read.

[moneysaving pharmacist]

So would I be. I have NEVER EVER said that Parkinsons and Alzheimer's are entirely preventable through nutrition. Nor am I aware of anyone who had ever made that ridiculous suggestion. If you are implying that I have perhaps you could post a link the occasion. Even when blind drunk or manically high I doubt I would be so idiotic. Only someone totally ignorant of Vitamin D synthesis would consider nutrition as a major source of Vitamin D.

If you read the Mike Adams article you linked to, in the second paragraph under the heading 'why vitamin D is a miracle nutrient for the brain' he states:

[quote]Thus, it is no surprise that patients who lacked sufficient levels of vitamin D would suffer poor brain function and eventually be diagnosed with neurological disorders such as Parkinson's or Alzheimer's, both of which are entirely preventable through nutrition./[quote]

Secondly, the fact that your comment was accepted on the NHS choices website is not relevant. If you read the terms and conditions for comments on articles (http://www.nhs.uk/Commentspolicy/Pages/comments%20on%20articles.aspx), it does say that comments have to be correct and in fact comments are moderated by an outside, independent, company. Having a comment published on the NHS choices website can not be construed as having the approval of the NHS.

Also Ted, what qualifications do you have? I'm sure you know that a little knowledge can be a dangerous thing.

[Ted_Hutchinson]

If you read the Mike Adams article you linked to, in the second paragraph under the heading 'why vitamin D is a miracle nutrient for the brain' he states:
Well I have to admit in that respect I know Mike Adams is wrong. We only have to take the Mohammed Ali Parkinson's example to see that it almost certainly was not his diet but the repeated blows to his head that were most likely cause the damage. Where I live the incidence of Parkinson's seems to be higher in agricultural workers and thus the issue of sprays/pesticides may possibly be involved.
I think it is simply ludicrous to say that all cases of Parkinson's and Alzheimer's are preventable by diet but the fact I post a link to an article does not necessarily mean I support every word/sentence within that article. Only that I think it is generally interesting and relevant to the thread. I'd never make any progress if I had to clarify my understanding of every single paper I provide links to or point out where I disagreed with that particular author.

I'd certainly never make such a claim and I'm sorry I didn't spot Mike Adam's howler.

Also Ted, what qualifications do you have? I'm sure you know that a little knowledge can be a dangerous thing. But surely what is worse than not having any qualifications is thinking you do understand issues because you have been trained.
If we look another NHS Choices article (http://www.nhs.uk/news/2008/10October/Pages/Yoghurtfightscancerclaim.aspx) that I haven't yet been able to reply to as the comments box has not appeared, we see the typical scientists' analysis and reply. But as a lay person I read the article with my knowledge of Vitamin D and I think something totally different explains why Bladder cancer, (which occurs less frequently the nearer to the equator your live) occurs less frequently among Swedish regular Yoghurt eaters.

I know that Swedish Milk and Yoghurt products are fortified with vitamin D.

So I think the most likely reason for those regularly consuming Swedish yoghurt having lower bladder cancer is probably related to the slightly higher vitamin D status they would have over people who consumed less fortified yoghurt.

I can't prove that my explanation of this particular finding is better or worse than the scientists and academics but I think it is absolutely reasonable and logical. It makes sense to me and I think anyone with common sense would agree that my suggestion as to the mechanism underlying the association of Swedish Yoghurt and lower bladder cancer incidence is worth considering. I cannot possibly think that considering other explanations and viewpoints can ever be dangerous, either in this instance or any other.

I think these days health professionals have got to come to grips with the idea that everyone can get hold of information as easily as they can. It's not the acquisition of knowledge that is important. No one can remember everything so what matters is ability to find the information you need when you want it. What matters is to think through the problem to the fundamental issues. If I had relied on my health professionals I would be in a wheelchair now. The fact I'm healthier than I have been for the past 20yrs is down to my use of the internet and my persistence in looking at all possible solutions.

I think the trouble with health professionals is that you are not trained to rigorously question your superiors or learn from past experience.
You keep on making the same mistakes and not learning from them.

Hence the fact Taubes can make you all look fools. But it doesn't matter if it's diabetes, heart disease or cancer. So many people are dying or suffering unnecessarily simply from the out of date medical dogma that is handed out to them. It's a tragedy you don't seem able to learn from your mistakes.

We have clashed in the past over the issue of statins. I think this article justifies my stance that there may be better and safer ways of dealing with the underlying problem. (http://www.lipidworld.com/content/pdf/1476-511x-7-37.pdf)

The current blog from Dr Davis on Disease Engineering (http://heartscanblog.blogspot.com/2008/10/disease-engineering.html)shows where UK medicine is heading and why it is bad for our health.

[Lurking Lawyer]

My dad was diagnosed recently as being having early stage Parkinson's Disease. To make matters worse, at the age of 62 it looks like he's about to be made redundant. Getting a job at that age after 37 years with the same employer would have been hard enough but I think that the recent diagnosis essentially means that he's taken enforced early retirement.

My parents have never been well off. They have a bit of money in the bank inherited when Mum's parents died (mid five figures, I'd guess - not really sure) but I can see hard times ahead for them. My heart goes out to Mum - I know how difficult can be at the best of times, without having to add financial worries to all of that.

Just wondering whether anyone with experience of PD in their family knows how it is viewed in terms of qualifying for Incapacity Benefit? As things stand, Dad has good days and not so good days so I suppose he can, in theory, work - albeit not in the same way as an able-bodied person, and PD will inevitably have a greater impact on that.

I'm also aware that IB is about to be replaced by Employment and Support Allowance. I suppose it's too early for anyone to have experience of how PD is treated for the purposes of qualifying for ESA?

Thanks in advance for any help.

[Skint_Catt]

My Dad retired before his Parkinsons was diagnosed, so sorry I can't help. My parents have just aapplied for Attendance Allowance though - the Parkinsons nurse should be able to advise a little on what he should be entitled to or see www.entitledto.co.uk (http://www.entitledto.co.uk)

C xx

[Ted_Hutchinson]

JAs things stand, Dad has good days and not so good days so I suppose he can, in theory, work - albeit not in the same way as an able-bodied person, and PD will inevitably have a greater impact on that.

I'm also aware that IB is about to be replaced by Employment and Support Allowance. I suppose it's too early for anyone to have experience of how PD is treated for the purposes of qualifying for ESA?May I suggest you invest in a copy of The Disability Alliance ESA guide (http://www.disabilityalliance.org/esaguide.htm) It's only £2.00 for people on benefit. Their website information is pretty good as well. I also think it's worth joining BenefitsandWork (http://www.benefitsandwork.co.uk/content/category/13/25/45/) I've only got months to go before I reach pension age so just hoping I don't hear from the DWP before pension date but certainly if I did I would rejoin BenefitsandWork as you do need to be sure you present your case in a way that doesn't allow any room for doubt. Knowing how the rules are supposed to be interpreted enables you to see where they may have been misapplied. The forum at Benefits and work was always quite helpful in the past but it's a while since I've been there.

It may indeed be worth keeping a diary of his "Not so good" days so that when it comes to completing the assessment forms the replies can be clear and authoritative and not open to misinterpretation.