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#1 em45

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Posted 17 November 2012 - 03:07 AM

Hello there..Seems like I have a big problem here not sure how to fix this ..well i know how it's just difficult. In the last 12months i have lost 2 stone in weight not by trying partially maybe but weight fell off very quickly..however my big problem now over past 6 months i've started to take sugar in my miiky once black sugarless coffee i started with 2 spoons of sugar wasn't enough 3 not enough as i could get no sweet taste ..have to hide this as i know i used to comment on sugar intake to my family.
I mentioned this to my doc who said well ' you know what to do cut out the sugar'' i know doc is right plus 2 of my siblings have diabetes all more reason.. weight is still ok but how could it be ?? with all that sugar..

Thank you
Em

#2 Kathrynne Holden, MS

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Posted 18 November 2012 - 05:45 PM

Dear Friend,
Your unexplained weight loss is definitely a concern, and I would discuss this candidly with your doctor. You may have developed a metabolic condition that needs to be addressed. This is particularly true in light of your sudden increased sugar intake, and your inability to taste sweetness without large amounts of sugar.

With PD, the sense of smell (olfactory sense) is often diminished, and when we are unable to smell food, we also lose some of the ability to taste food. We can usually taste sweetness better than salty, sour or bitter, and so we may develop a desire for sweet foods in preference to others. But your doctor should first confirm that there is no underlying condition causing your weight loss and craving for sweets; then refer you to a dietitian who can help you plan better eating habits.

I hope this is helpful, but if not, let me know.
Best regards,

Kathrynne Holden, MS

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#3 em45

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Posted 19 November 2012 - 09:50 AM

Thank you for your reply..I meant to tell you that I have Parkinson's now just over 7years at the moment i am on eldepryl 5g/once daily, Stalevo 75g/ 3daily and Stalevo 50g/ 2daily and Artane 3/daily.


Thanks again em

#4 Kathrynne Holden, MS

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Posted 20 November 2012 - 05:49 PM

This need for sugar is very common among folks with PD; even people who never cared for sweets before may develop a craving for it. No one knows exactly why this occurs. Some believe it is because of the decreased ability to smell and taste food. Others note that the brain is the greatest user of glucose of all the body's organs, and sugar is rapidly broken down into glucose which then can be used by the brain. Still others state that sugar seems to speed levodopa absorption.

You might try substituting healthful sweets for the sugar -- honey, fruits, maple syrup, for example -- rather than the empty calories of sugar.

Weight loss can sometimes reduce the risk for diabetes, so in that sense the weight lost can be a positive. Of greater concern, I believe, is that your weight loss was largely unplanned. It may well be good for your well-being in general, if you needed to lose some weight. But the fact that it has occurred unintentionally signals something is not right. Some frequent causes of weight loss include:

- nausea - reduces desire to eat
- tremor, dyskinesia, dystonia – may burn extra calories
- loss of the senses of smell and taste
- loss of appetite
-- sometimes due to medications
-- sometimes due to depression
- loss of manual dexterity
- eating very slowly, unable to finish meals; often because chewing and swallowing becomes tiring
- fear of choking
- difficulty swallowing

Do any of these seem to apply in your case? Sometimes, as PD progresses, medications themselves can diminish the appetite. Do you think you are eating less of a quantity of food than you were a year ago?

Let me know your thoughts; I don't know whether I can provide any insights, but I'll do my best.
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#5 em45

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Posted 21 November 2012 - 06:00 AM

Thank you so much yet again have not seen my doc yet, (next week)

Anyway, yes i am eating less of a quantity of food now as i was a year ago.,and yes very slow to eat ..if i am eating with my siblings or whoever the first thing they do is chop up my food as a few months ago i experienced trouble with swallowing that scares me a bit. Plus as i am left handed and pd is in my left hand i cannot use a fork and knife like normal so i guess it puts me off....
loss of smell and taste also plays a part, and yes depression..
Thank you for understanding there's times i stop and think this can't be normal.
Em

#6 Kathrynne Holden, MS

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Posted 23 November 2012 - 07:51 PM

Dear Em,
At this point in time, I do not think that the increase in sugar is a primary concern. True, it is empty calories, and can increase spikes in blood glucose. But I believe there are more important issues that need to be addressed, as soon as possible.

The difficulty with swallowing could be a condition called “dysphagia,” which is not uncommon among people with PD. The muscles that move food down the esophagus can slow down, and also the valve at the base of the esophagus (the “esophageal sphincter”) can become rather stubborn. It is very important that you ask your physician for a referral to a speech clinician/speech pathologist for a swallowing evaluation. The speech pathologist can determine whether you are at risk for choking, and can demonstrate safe swallowing techniques that will protect you.

Also, your physician can refer you to an occupational therapist, who can provide you with better eating utensils that will make it easier for you to use knife and fork. This may help you with the slowed eating.

Depression is not uncommon among people with PD. It can be due to PD itself, but I would ask your physician to do blood tests for serum B12 and vitamin D3, as both of these can be depleted in PD, and can be a cause of depression. Also, I recommend servings of fatty fish such as salmon, sardines, and mackerel several times weekly. If you cannot tolerate fish, then a good-quality fish oil supplement, containing a total of about 900 mg of DHA and EPA can help greatly. Deficiency of the omega-3 fatty acids found in fish can lead to various forms of mental illness including depression; but this can be reversed by restoring the balance of omega-3 fatty acids.

Regarding the loss of smell and taste, this does happen to nearly everyone, as we age, and can affect our food choices. Try to choose some foods that are particularly appealing, and include others that are especially nutritious and not overly-processed, such as fruits and vegetables even if they are less appealing.

Finally, be sure to take the Stalevo at least 30 minutes before meals, so that the levodopa is absorbed into the bloodstream well ahead of proteins in the meal. Protein can block absorption of the levodopa, such that PD symptoms are less well controlled. Allowing the levodopa to be well absorbed will help to reduce PD symptoms and may make it easier for you to eat, chew, and swallow as well.

Let me know if this is useful for you, and let me know how your physician responds. I will help further if I can.
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Kathrynne Holden, MS

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#7 em45

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Posted 24 November 2012 - 03:38 PM

Yes thank you i shall ask my doctor about the blood tests you mentioned and about the occupational therapist..

All i can say is a big thank you at least i can do something, as in have a good chat with the doctor

and i will keep you posted
Em

#8 jb49

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Posted 25 November 2012 - 07:34 AM

Wowsers, I just read this thread and it is packed full of information. Your answers to Em reinforced things that I knew and don't pay enough attention to like getting the levodopa onto the bus and sitting down before meals rather then having to jostle with the protein crowd for a seat. New information includes the fact that the brain uses sugar and low B12 levels can lead to depression. Thank you both, jb
Don't be hard on yourself, try your best and be strong!

#9 Kathrynne Holden, MS

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Posted 25 November 2012 - 07:39 PM

Em, I'll be looking forward to hearing more; please also ask your doctor about a test for serum homocysteine. This is a substance that results from metabolizing our food, and is normally cleared from the blood. But long-time users of levodopa (such as Stalevo) have been found to have elevated levels of homocysteine, and it can in time lead to depression, cardiovascular disease, and stroke. Your doctor can check for this when conducting blood tests for B12 and vitamin D3.

I am also very concerned about the possibility of dysphagia and a referral to a speech pathologist. I hope this will be helpful for you, and I look forward to your further comments.
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#10 Kathrynne Holden, MS

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Posted 25 November 2012 - 07:42 PM

JB, it's always so good to hear from you, and good to think that some information might be useful to you. I hope we'll be hearing from you oftener, you're a bright light on the forum. ;-)
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#11 em45

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Posted 28 November 2012 - 08:16 AM

Hello there and thanks again, is it ok with you if i were to print off page to show my doctor..as there quiet a bit of information to remember.?

much appreciated
Em

#12 Kathrynne Holden, MS

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Posted 28 November 2012 - 06:37 PM

Em, you most certainly can print out the information for your doctor, that's what we're here for. Here is some information s/he may like to have:


Homocysteine, B vitamins, and Parkinson's disease
by Kathrynne Holden, MS, RD

What is homocysteine?

Homocysteine is an amino acid found in the bloodstream; it is naturally
produced in small amounts by the human body from its precursor,
methionine. The body also removes homocysteine from the blood, using the B
vitamins folate, B12, and B6. An amount of homocysteine between 5 and 15
micromoles per liter of blood is considered normal; amounts greater than
that are considered "hyperhomocysteinemia" or elevated homocysteine.

Why is elevated homocysteine a problem?

The relationship between homocysteine and diseases is not clearly
understood at this time. However, researchers have discovered that
homocysteine can prevent the formation of nitric oxide, a substance that
keeps blood vessels pliable and prevents formation of atherosclerosis.
Thus, homocysteine could be implicated in cardiovascular disease, strokes,
and heart attacks.

Homocysteine may also be associated with memory impairment. In a study of
elderly individuals, elevated homocysteine was associated with cognitive
impairment (poorer ability to read, learn, remember, and understand) while
high levels of folate and vitamin B12 were associated with improved
cognition. Other researchers studied 1092 people aged 68 to 97, and found
that those whose homocysteine levels were over 14 micromoles per liter had
twice the risk of developing Alzheimer's disease as those with lower
levels.

The findings are based on a study of 1,092 people from
68 to 97 who were initially healthy and free of dementia. Their
homocysteine levels were measured and their health was monitored for
eight years. At the end of the study, 111 individuals had dementia,
including 83 with Alzheimer's. People whose homocysteine levels were
higher than 14 micromoles per liter of blood, one- fourth of the
participants, had nearly twice the Alzheimer's risk of those with lower
levels.

What about people with Parkinson's disease?

Some scientists found that people with PD who had been using levodopa for
some time had higher levels of homocysteine than newly-diagnosed PD
patients who had not begun treatment with levodopa. In another study,
using mice, researchers found that on a low-folate diet the mice had
increased levels of homocysteine. They speculate that increased
homocysteine can worsen oxidative stress on the neurons that produce
dopamine, and make them more easily damaged by environmental toxins.

Some degree of cognitive impairment, ranging from mild memory loss to
various types of dementias, is common among people with PD, more so than
in the general population. While not all cognitive impairment is related
to nutrient deficiency, some cases may well be, especially as people with
PD often change their eating habits in unsatisfactory ways.

In an article "Homocysteine and Atherosclerotic Heart Disease: A New and
'Unusual Suspect,'" Michelle Taylor-Chinn writes:

..... clinicians are advised to assess fasting homocysteine levels only
in high-risk patients -- including those with arterial occlusive disease,
hypothyroidism, impaired kidney function, systemic lupus erythematosus, or
a significant family history of premature atherosclerosis. Elderly
patients should also be considered for testing, as should patients who
receive certain medications or therapy (eg, theophylline, methotrexate,
levodopa, niacin [vitamin B3], nitrous oxide exposure). [Clinician Reviews
10(10):45-57, 2000. © 2000 Clinicians Publishing Group]

Because many people with PD meet one or more of these risk factors
(i.e., age, use of levodopa, and possibly other conditions), I recommend
that you discuss testing for homocysteine with your physician. Older
people in particular may not absorb vitamin B12 sufficiently from food,
and should be assessed for possible deficiency. I also advise an eating
pattern that includes vegetables, whole-grain and fortified breads and
cereals, fruits, dried beans, peas, and lentils, and fish.

-- Kathrynne Holden, MS, RD
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

O'Suilleabhain PE, Sung V, Hernandez C, Lacritz L, Dewey RB Jr,
Bottiglieri T, Diaz-Arrastia R. Elevated plasma homocysteine level in
patients with Parkinson disease: motor, affective, and cognitive
associations. Arch Neurol. 2004 Jun;61(6):865-8.

Muller T, Renger K, Kuhn W. Levodopa-associated increase of homocysteine
levels and sural axonal neurodegeneration. Arch Neurol. 2004
May;61(5):657-60.

Sachdev P. Homocysteine and neuropsychiatric disorders. Rev Bras
Psiquiatr. 2004 Mar;26(1):50-6

Lokk J. Treatment with levodopa can affect latent vitamin B 12 and folic
acid deficiency. Patients with Parkinson disease runt the risk of elevated
homocysteine levels. Lakartidningen. 2003 Aug 28;100(35):2674-7.

Teunissen CE, Lutjohann D, von Bergmann K, Verhey F, Vreeling F, Wauters
A, Bosmans E, Bosma H, van Boxtel MP, Maes M, Delanghe J, Blom HJ, Verbeek
MM, Rieckmann P, De Bruijn C, Steinbusch HW, de Vente J. Combination of
serum markers related to several mechanisms in Alzheimer's disease.
Neurobiol Aging. 2003 Nov;24(7):893-902.

Miller JW, Selhub J, Nadeau MR, Thomas CA, Feldman RG, Wolf PA. Effect of
L-dopa on plasma homocysteine in PD patients: relationship to B-vitamin
status. Neurology. 2003 Apr 8;60(7):1125-9.

McIlroy SP, Dynan KB, Lawson JT, Patterson CC, Passmore AP. Moderately
elevated plasma homocysteine, methylenetetrahydrofolate reductase
genotype, and risk for stroke, vascular dementia, and Alzheimer disease in
Northern Ireland. Stroke. 2002 Oct;33(10):2351-6.

Herrmann W, Knapp JP. Hyperhomocysteinemia: a new risk factor for
degenerative diseases. Clin Lab 2002;48(9-10):471-81.

Kelly PJ, Furie KL. Management and Prevention of Stroke Associated with
Elevated Homocysteine. Curr Treat Options Cardiovasc Med 2002
Oct;4(5):363-371.

Kelly PJ, Rosand J, Kistler JP, Shih VE, Silveira S, Plomaritoglou A,
Furie KL. Homocysteine, MTHFR 677C-->T polymorphism, and risk of ischemic
stroke: results of a meta-analysis. Neurology 2002 Aug 27;59(4):529-36.

Cindy J. Warren CJ. Emergent Cardiovascular Risk Factor: Homocysteine.
Prog Cardiovasc Nurs 17(1):35-41, 2002.
======================================================

Although this study found that levels of vitamin D were often low in early-onset PD and increased slightly over time, nonetheless, deficiency of vit. D is associated with depression, falls, and other concerns, and it would be well to establish your current serum level.


Public release date: 14-Mar-2011

Contact: Jennifer Johnson
jrjohn9@emory.edu
404-727-5696
JAMA and Archives Journals
Vitamin D insufficiency high among patients with early Parkinson disease

CHICAGO – Patients with a recent onset of Parkinson disease have a high prevalence of vitamin D insufficiency, but vitamin D concentrations do not appear to decline during the progression of the disease, according to a report in the March issue of Archives of Neurology, one of the JAMA/Archives journals.

Vitamin D is now considered a hormone that regulates a number of physiological processes. "Vitamin D insufficiency has been associated with a variety of clinical disorders and chronic diseases, including impaired balance, decreased muscle strength, mood and cognitive dysfunction, autoimmune disorders such as multiple sclerosis and diabetes (types 1 and 2), and certain forms of cancer," the authors write as background information in the article. "Vitamin D insufficiency has been reported to be more common in patients with Parkinson disease (PD) than in healthy control subjects, but it is not clear whether having a chronic disease causing reduced mobility contributes to this relatively high prevalence."

Marian L. Evatt, M.D., M.S., of Emory University School of Medicine and the Atlanta Veterans Affairs Medical Center, and colleagues examined the prevalence of vitamin D insufficiency in untreated patients with early PD, diagnosed within five years of entry into the study. They conducted a survey study of vitamin D status in stored blood samples from patients with PD who were enrolled in the placebo group of the Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism (DATATOP) trial.

The authors found a high prevalence of vitamin D insufficiency and deficiency in 157 study participants with early, untreated PD. At the baseline visit, most study participants (69.4 percent) had vitamin D insufficiency and more than a quarter (26.1 percent) had vitamin D deficiency. "At the end point/final visit, these percentages fell to 51.6 percent and 7 percent, respectively."

"Contrary to our expectation that vitamin D levels might decrease over time because of disease-related inactivity and reduced sun exposure, vitamin D levels increased over the study period," the authors write. "These findings are consistent with the possibility that long-term insufficiency is present before the clinical manifestations of PD and may play a role in the pathogenesis of PD."

Vitamin D insufficiency in patients with early PD was similar or higher than the prevalence reported in previous studies.

"We confirm a high prevalence of vitamin D insufficiency in patients with recent onset of PD, during the early clinical stages in which patients do not require symptomatic therapy," the authors conclude. "Furthermore, vitamin D concentrations did not decrease but instead increased slightly over the course of follow-up. This provides evidence that during early PD, vitamin D concentrations do not decrease with disease progression."

###

(Arch Neurol, 2011;68[3]:314-319. Available pre-embargo to the media at www.jamamedia.org.)

Editor's Note: Please see the article for additional information, including other authors, financial contributions and affiliations, financial disclosures, funding and support, etc.

http://www.eurekaler...j-vdi031111.php
Best regards,

Kathrynne Holden, MS

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#13 em45

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Posted 30 November 2012 - 12:12 PM

Hi Doc/ Kathrynne..Only me again..been to my doc today and she was impressed and happy with the information as a lot of us know that not all doctors are high up on such information regarding PD and other illnesses/ conditions.

However i have to wait until next week to have bloods done so will keep you informed .

Thank you once again
Em

#14 Kathrynne Holden, MS

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Posted 30 November 2012 - 05:07 PM

Thanks for updating us, Em, and I do hope the information was useful for your doctor. I'll look forward to hearing about your blood tests and will be hoping they are all top-notch.
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#15 em45

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Posted 22 December 2012 - 10:56 AM

Hello Kathrynne/Doc

Got blood test results back only yesterday doc phoned me, anyway Vitamin D quiet low so doc has put me on IDÉOS chewable tablets..never heard of them, she just told me to go back after Christmas..so will see how things go.
instead of thanking you this time lol..best wishes to you and yours for Christmas.
Em.

#16 Kathrynne Holden, MS

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Posted 01 January 2013 - 04:38 PM

Em, I am sorry to be so long in responding, but very happy to know your doctor is resolving the concern with low serum vitamin D. Please do continue to keep us informed. Christmas was very peaceful and happy here and I hope yours was also; and I wish you a most Happy New Year!
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