52 Year old male, with PD since 2001, sug... - Cure Parkinson's

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52 Year old male, with PD since 2001, sugar-holic that may cause my symptoms to be worse. How about you?

munrue52 profile image
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Hi My name is Mark and I am 52 years old and I have been diagnosed with PD since 2001. I am at the point now where the amount of Sinemet I take is becoming too large for me to handle the side effects. I have 1-3 panic attack a day. I am wondering if anyone has more PD symptoms after eating a lot of sugary foods. I do not have Diabetes, although my Mom did and me Dad was borderline. My problem is I am a sugarholic. I love cookies, sweet cereal, ice cream, cake, almost any desert. So, somebody tell me if they have the same issue here that I have.

Thank You!

Mark

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silvestrov profile image
silvestrov

I do not have full internet access so I cannot post links but I think you should be taking the combination of acetyl l carnitine & alpha lipoic acid. Not only is it good for PD it also helps to regulate blood sugar levels and it is also good for diabetic neuropathy. I take the vitacost brand and it is a good value. ALA & ALCAR should be taken on an empty stomach say between breakfast & lunch and lunch & dinner. If it causes stomach upset (it can cause anxiety so don't take it later in the day) take it with protein free breakfast and lunch. PWP should eat protein light meals for breakfast and lunch to not interfere with the absorption of levodopa.

silvestrov profile image
silvestrov

Here is a good link to the effects of acetyl l carnitine, alpha lipoic acid and carnosine on "New Findings in the Fight Against Diabetes" and "Preventing Cognitive Decline":

lifeextension.com/magazine/...

Alpha lipoic acid & acetyl l carnitine for PD:

"Most notably, we found that when combined, LA and ALC worked at 100-1000-fold lower concentrations than they did individually."

ncbi.nlm.nih.gov/pubmed/204...

Here are the applications and warnings about alpha lipoic acid:

umm.edu/health/medical/altm...

Also, 500 mg of carnosine 3 times a day for PD:

"Another study examined the effect of 1.5g of carnosine daily for 30 days in Parkinson’s patients treated with L-Dopa. The addition of carnosine to the treatment regimen significantly improved neurological symptoms, with a 36 percent improvement in symptoms compared to a 16 percent improvement in the control group. Clinical signs of Parkinson’s disease, including decreased bodily movements, and rigidity of extremities, were also significantly improved. This improvement in the “everyday activity” of Parkinson’s patients allows them more independence and better quality of life, leading the authors of the study to conclude that carnosine is a reasonable way of improving the treatment of Parkinson’s disease and decreasing the possible toxic effects of standard drug therapy."

vitaminretailer.com/l-carno...

nourilo profile image
nourilo in reply to silvestrov

Silvestrov, can you give us a complete list of meds and supplements that you are taking? Thanks.

silvestrov profile image
silvestrov in reply to nourilo

Certainly...mind you it is lengthy and recently I tried cutting back only to have some muscles in my left shoulder & face start to twitch. Back to the high doses.

salmon oil. Cod liver oil , flax seed oil, evening primrose oil, Black yea extract. EGCG. Acetyl l carnitine alpha lipoic acid Coq10. Vitamin C. Quercetin, wobenzym N, Riboflavin, thiamine, methylcobalamin, folate, niacinamide. Theanine, melatonin, magnesium threonate, magnesium chloride, selenomethionine, zinc ororate, iodine in the form of organic kelp or nascent iodine. Bacalin, ginsing, n-acetylcysteine.

I have also taken/experimented taking carnosine. PEAK ATP - it gave me too much energy and made me shake .. same story for pyruvate.

I rotate a number of herbs and the list includes. Black tea, Mucuna pruriens extract EGCG, Cat's Claw, Polygonum multiform, ling zhi mushroom, ginsing yohimbine - it made me twitch. Resveratrol & pterodtilbene. Piperine.

I don't take all of them now bit many of them.

I could elaborate if you want further explanation.

jenniferdunstan profile image
jenniferdunstan in reply to silvestrov

Thank you for your thoughtful response. I will purchase these supplements today. Do you have a favorite supplement website you use for these?

silvestrov profile image
silvestrov in reply to jenniferdunstan

One good website is Nutrabio because all their products are pharmaceutical grade and they (usually) come in capsule or powder form.

nutrabio.com/

Which specific supplements are you thinking of taking?

silvestrov profile image
silvestrov

Mark,

I did some research earlier and found several articles that specifically relate to hyperglycemia and its effects on levodopa. The following link 'levodopa screws up your blood sugar...' has several studies on the effect of blood sugar on levodopa (and visa versa):

neurotalk.org/archive/index...

Additionally, I found a thread from diabetes India entitled: '16 Herbs for control of diabetes--------'. Every person with Parkinson's has some sort of additional problem which may exacerbate treatment of their condition. In your case it may be blood sugar. My theory of treating PD and a separate (contributing) physical problem is to treat both of them with the very same amino acids, herbs, vitamins and minerals. By doing this you need not have a separate protocol for each - the therapy is one and the same. On the Indian diabetes tread I looked at the list and, of the first 5 I investigated, #1 and #5 can treat blood sugar imbalances and Parkinson's disease.

1) fenugreek - since the rationale for treating diabetes is in the above link I will only post the study relating fenugreek to PD:

Efficacy and safety of standardized extract of Trigonella foenum-graecum L seeds as an adjuvant to L-Dopa in the management of patients with Parkinson's disease.

"In conclusion, IBHB can be useful adjuvant treatment with L-Dopa in management of PD patients."

ncbi.nlm.nih.gov/pubmed/235...

5) allicin from garlic

Allicin Protects PC12 Cells Against 6-OHDA-Induced Oxidative Stress and Mitochondrial Dysfunction via Regulating Mitochondrial Dynamics.

CONCLUSION:

"In summary, our data strongly suggested that allicin treatment can exert protective effects against PD related neuronal injury through inhibiting oxidative stress and mitochondrial dysfunction with dynamic changes."

ncbi.nlm.nih.gov/pubmed/260...

________________________________________________________________________________________

In addition to this info there are the supplements I previously listed, acetyl l carnitine, alpha lipoic acid and L-carnosine.

Are there any other substances which are good for PD and blood sugar tolerance?

Magnesium and iodine.

Magnesium and diabetes:

Oral magnesium supplementation improves insulin sensitivity and metabolic control in type 2 diabetic subjects: a randomized double-blind controlled trial.

CONCLUSIONS:

Oral supplementation with MgCl(2) solution restores serum magnesium levels, improving insulin sensitivity and metabolic control in type 2 diabetic patients with decreased serum magnesium levels.

ncbi.nlm.nih.gov/pubmed/126...

The interesting part of the above study is they used magnesium chloride for oral supplementation. Magnesium chloride is a liquid and it can also be sprayed on the skin thus bypassing the stomach and is then absorbed at a cellular level.

Dr. Sircus is a huge advocate of magnesium chloride for Parkinson's disease and here are several articles he penned about MgCl(2) for diabetes and PD.

Diabetes: drsircus.com/medicine/magne...

Parkinson's: drsircus.com/medicine/parki...

Interestingly enough, Dr. Sircus is also a great advocate of iodine in PD and the information is in the same article. Dr. Sircus recommends using nascent iodine. Nascent iodine is atomic iodine and the thyroid (and body) interprets it as iodine. Potassium iodide, the standard iodine supplement, requires conversion to become elemental iodine. This the body requires higher quantities of potassium iodide than nascent iodine to have a similar effect.

What about iodine and diabetes?

Urinary iodine is associated with insulin resistance in subjects with diabetes mellitus type 2.

ncbi.nlm.nih.gov/pubmed/232...

Harold Foster's

"Parkinson’s Disease, Multiple Sclerosis and Amyotrophic Lateral Sclerosis: The Iodine-Dopachrome-Glutamate Hypothesis"

orthomolecular.org/library/...

______________________________________________________________________________________

Constipation is a common problem for Parkinson's disease patients and psyllium, Plantago ovata, is a known aid to relieve constipation. Is it good for PD?

A randomised clinical trial to evaluate the effects of Plantago ovata husk in Parkinson patients: changes in levodopa pharmacokinetics and biochemical parameters

Conclusions

"Plantago ovata husk administration caused a smoothing and homogenization of levodopa absorption, providing more stable concentrations and final higher levels, resulting in a great benefit for patients."

Diabetes:

Effects of psyllium on glucose and serum lipid responses in men with type 2 diabetes and hypercholesterolemia1,2,3

"Conclusion: The addition of psyllium to a traditional diet for persons with diabetes is safe, is well tolerated, and improves glycemic and lipid control in men with type 2 diabetes and hypercholesterolemia."

ajcn.nutrition.org/content/...

I know I am 'throwing' a lot at you but it is good to get information early on than take several years to discover it.

Best wishes and if you have any questions throw them this way.

Rich

munrue52 profile image
munrue52 in reply to silvestrov

Thanks so much for all of this info! I will be looking this over.

Mark

silvestrov profile image
silvestrov in reply to munrue52

My pleasure. The beauty of nutrients is they can have multiple and simultaneous biological effects in the body. After I posted the second batch of information I discovered that the amino acid taurine has potential application to both PD and diabetes.

Reduced plasma taurine level in Parkinson's disease: association with motor severity and levodopa treatment.

CONCLUSION:

:Our study supports that taurine may play important roles in the pathophysiology of PD and the disturbances caused by chronic levodopa administration."

ncbi.nlm.nih.gov/pubmed/260...

Taurine ameliorates hyperglycemia and dyslipidemia by reducing insulin resistance and leptin level in Otsuka Long-Evans Tokushima fatty (OLETF) rats with long-term diabetes

nature.com/emm/journal/v44/...

The potential usefulness of taurine on diabetes mellitus and its complications

ncbi.nlm.nih.gov/pmc/articl...

Bridielena profile image
Bridielena

Hello

I think I have.. Yesterday I ate a full box of chocolates over a few hours then got stuck into minties (lollies) while relaxing in front of the TV......I eat sweets till I'm feeling ill usually......my mouth feels dry and the roof tender.....BUT I always go back to the regime. Love Ice Creams, Coca Cola, Ginger Beer. The last two I never drank until about 12 months ago....disliked soft drinks all my life. Not keen on Cake or biscuits although love savoury biscuits, potato chips and cheese Doritos. Do try to eat regular meals and keep away from red meat.......mainly vegetables and fruit and oh!! Love flavoured milk, particularly Caramel and Banana.....drink coffee and tea.......not green tea though.

Reading back over the above, I think I need help.....YES I reckon I'm addicted to sugar...oh after 50 years of not adding sugar to tea or coffee, I now add 4/5 teaspoons of sugar.....this only started about same time I began on the Coca Cola merry go round.... AND I have lost weight nor do I believe I have Diabetes.

I reckon I'm not alone and nor are you with this problem.

I'm 69 and diagnosed 2005. Managing PD quite well except in the morning when I can't move until first dose of meds....Madopar....around 5/6 am.

Can anyone advise.....no need to really....I know what I have to do.

HGE

silvestrov profile image
silvestrov in reply to Bridielena

What makes this thread so interesting is it is nothing new. With some internet research I found a previous thread on HealthUnlocked in regards to blood sugar and Parkinson's disease:

healthunlocked.com/parkinso...

This thread is from 4 years ago! Also, within the posting there is another forum discussion which speaks of the relationship between PD, diabetes and blood sugar levels:

neurotalk.org/parkinson-s-d...

I only read page 1 (of 7) in the thread and one PD/diabetes poster noted:

"I'm finding if I can keep my blood sugar in the 5.5 range my meds work just like the pharmacy says they should, but if my reading is over 6 when its time to take them, some slowness to kick in, and if over 7 forget it!"

HGE, perhaps you may want to purchase a glucose meter to see if you have fluctuations in the effectiveness of Sinemet (levodopa of whatever kind) in conjunction with your blood sugar levels. I know you stated you are not a diabetic but with your consumption of 'sweets' and dairy products, they may effect blood sugar levels (thus effecting levodopa effectiveness).

Plus, it seems that there is a negative feedback loop going on with levodopa and serum glucose levels. If levodopa works well at normal blood sugar levels but levodopa has a hyperglycemic effect in some people. So an effect of levodopa is to limit its own effectiveness by raising blood sugar levels.

From on of the links I posted I read that:

neurotalk.org/archive/index...

"Notably, hyperglycemic effects of levodopa and dopamine have been documented in humans and laboratory animals .... ....Levodopa and its metabolite dopamine have been shown to cause hyperglycemia in humans in a number of studies...."

and....

"First, if you use levodopa, you should be aware that it is among the medications that, in some people, can lead to elevated blood glucose. Therefore, it will be extra-important for you to check your blood sugar frequently, to determine whether it is a factor for you.

"

Kathrynne Holden, MS, RD

visit the "Discussion Corner" at the National Parkinson Foundation parkinson.org

And finally, here are the recommendations that Kathrynne Holden, MS, RD

makes about diabetes, diet and PD (in answering several questions)

"Proteins in food can significantly block the absorption of the levodopa in Sinemet. In some people, milk proteins are especially formidable in this respect – some have stated that a single glass of milk in the morning can block their doses of Sinemet for the rest of the day.

"

"Have you noticed, when dairy products are given, if the PD symptoms increase, along with the pain in the legs and back? If so, I would consider it very possible that she is particularly sensitive to milk proteins, and they are blocking the effects of the Sinemet. This could mean increased rigidity or cramping as you describe."

"If this is the case, then she should avoid milk, yogurt, cheese, cottage cheese, and other dairy products. Instead, see if she will accept a soy or rice milk substitute, such as Rice Dream or soymilk; this can be very useful for putting on cereal, in coffee, or even drinking plain. Be sure to get the kind that is fortified with calcium and vitamin D, as it will be important for her to get enough of these."

"Regarding the pain, unfortunately, the term is very vague; PD is associated with many kinds of pain – muscle/joint ache, cramping/dystonia, etc. If the pain she experiences tends to occur more often when the Sinemet wears off then it could be “wearing-off dystonia,” a kind of cramping that is often reduced when the next dose of Sinemet takes effect. There are several things that have been successful for some people, but unfortunately, not for all:"

- quinine; this must be prescribed by her doctor

- large doses of vitamin E, usually starting with 1500-2000 IU/day for one or two weeks; if the dystonia lessens, then the amount of vitamin E is lowered by about 100 IU/day, until the pain begins to return. That amount of vitamin E is then determined to be the useful amount for that person

- calcium/magnesium/potassium – these minerals are all involved in muscle contraction and relaxation. If intake is insufficient, it can lead to a kind of cramping known as “tetany.” Also, if dystonia occurs, deficiencies of these minerals can make dystonia much worse. So, if the Sinemet absorption was blocked by milk, resulting in dystonia, and mineral deficiencies were also present, the pain could be exacerbated. I would ask her doctor to refer her to a registered dietitian who can determine whether her intake is adequate, and whether supplements might be helpful. Calcium citrate (especially if crushed) is better absorbed than calcium carbonate, and also does not constipate.

"First, if you use levodopa, you should be aware that it is among the medications that, in some people, can lead to elevated blood glucose. Therefore, it will be extra-important for you to check your blood sugar frequently, to determine whether it is a factor for you."

"Carbohydrates should be unrefined for the most part -- whole grains rather than white bread/crackers, cooked dried beans, fresh fruits rather than those canned in syrup, etc. This will be very helpful with regard to PD, because these are high in fiber, which is beneficial for constipation, as well as blood pressure, and the heart."

"I recommend several servings of fish per week, it too benefits both those with PD and those with diabetes, having high-quality protein, B12, and omega-3 fatty acids that protect both the nervous system and the heart."

"Cinnamon has been found to help control blood glucose, and could be a good resource for you."

"I recommend you ask your endocrinologist for a referral to a registered dietitian who is a certified diabetes educator. S/he can help you plan a healthful diet for diabetes, and if willing, can also address any PD-related questions to me via this forum."

Bridielena profile image
Bridielena in reply to silvestrov

Thank you so much for taking me seriously.

I am printing this out to take to Mike, my Neurologist with whom I am catching up on the 25th of the month.

My husband was rather disappointed in me opening up to you all but he doesn't have PD.

It is complicated though.

silvestrov profile image
silvestrov in reply to Bridielena

Here are the 3 studies noted in a form about PD, diabetes, levodopa/carbidopa and blood sugar.

The relationship between diabetes mellitus and Parkinson's disease.

Sandyk R1.

Abstract

It has been reported that 50% to 80% of patients with Parkinson's disease have abnormal glucose tolerance which may be further exacerbated by levodopa therapy. Little is known about the impact of chronic hyperglycemia on the severity of the motor manifestations and the course of the disease as well as its impact on the efficacy of levodopa or other dopaminergic drugs. This issue, which has been largely ignored, is of clinical relevance since animal studies indicate that chronic hyperglycemia decreases striatal dopaminergic transmission and increases the sensitivity of postsynaptic dopamine receptors. In addition, evidence from experimental animal studies indicates that diabetic rats are resistant to the locomotor and behavioral effects of the dopamine agonist amphetamine. The resistance to the central effects of amphetamine is largely restored with chronic insulin therapy. In the present communication, I propose that in Parkinson's disease diabetes may exacerbate the severity of the motor disability and attenuate the therapeutic efficacy of levodopa or other dopaminergic agents as well as increase the risk of levodopa-induced motor dyskinesias. Thus, it is advocated that Parkinsonian patients should be routinely screened for evidence of glucose intolerance and that if found aggressive treatment of the hyperglycemia may improve the response to levodopa and potentially diminish the risk of levodopa-induced motor dyskinesias.

ncbi.nlm.nih.gov/pubmed/808...

_________________________________________________________________

Levodopa with carbidopa diminishes glycogen concentration, glycogen synthase activity, and insulin-stimulated glucose transport in rat skeletal muscle.

Smith JL1, Ju JS, Saha BM, Racette BA, Fisher JS.

Abstract

We hypothesized that levodopa with carbidopa, a common therapy for patients with Parkinson's disease, might contribute to the high prevalence of insulin resistance reported in patients with Parkinson's disease. We examined the effects of levodopa-carbidopa on glycogen concentration, glycogen synthase activity, and insulin-stimulated glucose transport in skeletal muscle, the predominant insulin-responsive tissue. In isolated muscle, levodopa-carbidopa completely prevented insulin-stimulated glycogen accumulation and glucose transport. The levodopa-carbidopa effects were blocked by propranolol, a beta-adrenergic antagonist. Levodopa-carbidopa also inhibited the insulin-stimulated increase in glycogen synthase activity, whereas propranolol attenuated this effect. Insulin-stimulated tyrosine phosphorylation of insulin receptor substrate (IRS)-1 was reduced by levodopa-carbidopa, although Akt phosphorylation was unaffected by levodopa-carbidopa. A single in vivo dose of levodopa-carbidopa increased skeletal muscle cAMP concentrations, diminished glycogen synthase activity, and reduced tyrosine phosphorylation of IRS-1. A separate set of rats was treated intragastrically twice daily for 4 wk with levodopa-carbidopa. After 4 wk of treatment, oral glucose tolerance was reduced in rats treated with drugs compared with control animals. Muscles from drug-treated rats contained at least 15% less glycogen and approximately 50% lower glycogen synthase activity compared with muscles from control rats. The data demonstrate beta-adrenergic-dependent inhibition of insulin action by levodopa-carbidopa and suggest that unrecognized insulin resistance may exist in chronically treated patients with Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/152...

____________________________________________________________________

Diabetes and mitochondrial function: role of hyperglycemia and oxidative stress.

Rolo AP1, Palmeira CM.

Abstract

Hyperglycemia resulting from uncontrolled glucose regulation is widely recognized as the causal link between diabetes and diabetic complications. Four major molecular mechanisms have been implicated in hyperglycemia-induced tissue damage: activation of protein kinase C (PKC) isoforms via de novo synthesis of the lipid second messenger diacylglycerol (DAG), increased hexosamine pathway flux, increased advanced glycation end product (AGE) formation, and increased polyol pathway flux. Hyperglycemia-induced overproduction of superoxide is the causal link between high glucose and the pathways responsible for hyperglycemic damage. In fact, diabetes is typically accompanied by increased production of free radicals and/or impaired antioxidant defense capabilities, indicating a central contribution for reactive oxygen species (ROS) in the onset, progression, and pathological consequences of diabetes. Besides oxidative stress, a growing body of evidence has demonstrated a link between various disturbances in mitochondrial functioning and type 2 diabetes. Mutations in mitochondrial DNA (mtDNA) and decreases in mtDNA copy number have been linked to the pathogenesis of type 2 diabetes. The study of the relationship of mtDNA to type 2 diabetes has revealed the influence of the mitochondria on nuclear-encoded glucose transporters, glucose-stimulated insulin secretion, and nuclear-encoded uncoupling proteins (UCPs) in beta-cell glucose toxicity. This review focuses on a range of mitochondrial factors important in the pathogenesis of diabetes. We review the published literature regarding the direct effects of hyperglycemia on mitochondrial function and suggest the possibility of regulation of mitochondrial function at a transcriptional level in response to hyperglycemia. The main goal of this review is to include a fresh consideration of pathways involved in hyperglycemia-induced diabetic complications.

ncbi.nlm.nih.gov/pubmed/164...

pen1 profile image
pen1 in reply to Bridielena

I definitely identity with sugar addiction . Made worse because protein stops madopar working so I nibble on carbs ALL the time. Even get up in the night to eat

I've gone up 4 dress sizes and hate the sight of myself and hate myself even more for not having the willpower to stop. I know both the cravings and lack of willpower are PD related. I really wish the medical profession would realise that PD has as many psychological effects as physical . I can work out the physical stuff myself most of the time (judt as well as no neuro appt for 2 years and been trying to get appt with gp since January - NHS is in its death throes ) but I find the psychological effects much harder to handle .

.

Bridielena profile image
Bridielena in reply to pen1

Oh gosh Pen1. Here in Queensland where I was born and live we have extraordinary services available. My Neurologist even tries to keep in touch while I'm travelling by mobile phone.....if I'm in the remotest of places in Outback Australia he just keeps on until we connect. It is so reassuring.

I'm thrusting down Minties as I type.....I know I won't stop until I'm feeling quite ill......thank goodness I haven't put on weight....never has been a problem. I have a lot of Dyskinesia (?) My local GP says that's why I have lost weight as my torso is constantly being tormented.

I'm determined to stop this gorging and once all gone won't buy when I'm at the grocery store tomorrow.

I'm now having treatment with an Osteopath who is giving me relief for pain particularly in the lower back and she is on the Warpath with me and my Diet.....I have always had to be pushed into doing the correct thing for myself so now she's doing the pushing. She wants me to start taking L Tyrosine for Brain Health and there's a good connection for doing so but I want to talk it over with Mike. (My Neurologist)

By the way both my Neurologist and Osteopath are English and I feel privileged to have their services.

Take care

HGE

JohnPepper profile image
JohnPepper

Hi Munrue. There is no Pd medication on the market that does anything to slow down or stop the progression of Pd. Therefore, whether you are taking any Pd medication or not, your Pd is still continuing to get worse all the time.

Pd medication is designed to mask one or two of the symptoms. That does not mean that this will work for you.

If the medication you are taking does not mask any of your symptoms within a short period of time, then STOP TAKING it.

If you have been taking Pd medication for quite a while and you don’t think it is doing anything to mask any of your symptoms then slowly reduce the medication by maybe half a pill each week until it is finished. Make a note of what changes you can notice and cease reducing that medication at that point, until you feel that you have adjusted to that level of medication.

If you are on more than one medication for Pd then reduce one at a time in the suggested manner.

Don’t be ashamed to tell your neurologist what you are doing. If he/she tells you that you must or should not reduce the medication then ask him/her what it is doing for you? Refer to paragraph 1.

Good luck!

John

Hikoi profile image
Hikoi in reply to JohnPepper

I don't get how this relates to Munrue's question about sugar John?

JohnPepper profile image
JohnPepper in reply to Hikoi

Hi Hikoi. The way I read his question he has two problems, the first is taking too much sinemet and the second it the sugar problem.

I like to bring to the attention of all users of sinemet and similar medications that they do nothing to slow down the progression of Pd, so why take them? The sinemet may or may not influence the craving for sugar, I don't know.

Anybody asking the second question should know the answer already, stop eating foods that contain sugar. If he had been diagnosed with diabetes he would have already been told to do that. So why wait unntl he has diabetes?

Regards

John

Hikoi profile image
Hikoi in reply to JohnPepper

I see. I have never been told that sinimet or any drug stops PD progression and never seen it written down that it does. I'm surprised that you think people have that idea.

JohnPepper profile image
JohnPepper in reply to Hikoi

H Hikoi. I think that patients take the medication the doctor prescribess, without question. Some find immediate positive effects. Some find no positive or negative results and some find side effects either serious or minor.

I doubt if many patients think that the medication is not meant to at least slow down the progression of the Pd. I do think that many patients in fact do thnk that the medication will slow down the proogression of the Pd.

I have not come across any patient who has been told anything about the effect of any of the Pd medication, other than "It may help you with some of your symptoms"

The fact that I have never heard of a doctor who has said, up front, "This will do nothing to slow down the progression of your Pd", is not surprising. I wonder how many patients would take the medication if they were told this?

I seem to be the only patient who voices this fact. I wonder why?

John

october61 profile image
october61

Hello Mark,

Since 2005 I have had a problem with eggs. If I eat an omelette I might as well go straight to bed because, I will be unable to function for a few hours. Since 2015 beer has become the same, I cannot tolerate the after effects. In my experience too much of anything makes me feel like sh#t!

I visited a Nutritionist in 2014 to try and improve my health, she told me that sugar is the new enemy. Talk with a Nutritionist, it may bring you some answers.

Take care,

Paul Cook

Dear2016 profile image
Dear2016

My Al has followed this pathway with sugar, saying it gives him a boost. Probably half or more of his daily intake comes from sweets. He used to drink coffee to gain the same uplifting feeling.

JohnPepper profile image
JohnPepper

Hi Hikoi. What do I stand to gain by telling lies? What does anybody stand to gain by misleading other people? If what I am saying i not true. then why am I bothering to say it?

Come on Hikoi, you may have nefarious reasons to not want other people to believe what I am saying, so perhaps you can tell us what they are!

John

Hikoi profile image
Hikoi in reply to JohnPepper

John I have never said, nor believe you purposely tell lies.

I do think your knowledge is often outdated and can be misleading. I don't agree that many patients think medication will slow progression.

JohnPepper profile image
JohnPepper in reply to Hikoi

Hi Hikoi. Like my photo here I sometimes come over in the wrong way. Perhaps you can enlighten me on what knowledge I have is outdated please. Are yo referring to medication or GDNF or exercise?

It is not a case of thinking that all patients think that their medication is keeping the Pd at bay but there are plenty who do and that should not be the situation. Everybody should be aware that none of the medication is slowing down the progression of their Pd and they need to do something that really can do so.

I thank you for your response

John

silvestrov profile image
silvestrov

I discovered the following study entitled:

Taste preferences in Parkinson's disease patients

chemse.oxfordjournals.org/c...

I investigates if PwP have different preferences than a control group in regards to either salt or sugar.

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