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04-28-2007, 01:14 PM | #1 | ||
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Member
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Hi:
More than a year ago I was on a clinical trial (precept 1347) which has now been discontnued. The study involved brain scans, blood work, urinalysis etc. I was to see my PD every three months, get a refill of the medication under study and to get a brain scan at Yale Hospital every two years. After this study was discontinued I was invited to participate in a follow up, which I readily accepted. I had my first visit last week. This took about an hour and a half and consisted of blood work (including DNA analysis), vital signs, a lengthy questionaire, memory, subtracting from 100 by sevens, etc. I think we have all taken this test. I took mine almost 4 years ago when I was first diagnosed. However, there was one test that was added. I was given a smell test. This consisted of a number of scratch cards, each of which held a unique scent. I was to scratch one of the cards, smell it and identify the scent. I couldn't smell anything even though I was assured that the scents were very strong and easily recognizable. The clinical coordinator was very surprised that I couldn't smell anything. I was under the impression that the loss of smell was a feature of Parkinson's Disease. Could someone enlighten me on this? Thanks Lloyd |
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04-28-2007, 02:02 PM | #2 | |||
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In Remembrance
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...and not much else. Like you, I have long understood that the sense of smell is lost early on.
A point or two of relevance- Using the Lewy body as a marker (the "gold" standard), a German researcher named Braak has determined that the first anatomical evidence of PD occurs in two places - the stomach wall and the olfactory bulb. From there the Lewy bodies march like little footprints up the nerves toward the brain. Also- The olfactory bulb and its nerves are an entry point for heavy metals from the environment, My smeller quit so long ago that I don't even remember when.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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04-28-2007, 02:05 PM | #3 | |||
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Member aka Dianna Wood
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Dear Burkle,
If you were like me, and had a genetic mutation, your olfactory (sense of smell) would be intact. Most idiopathic Parkinson's disease have loss of smell as one of the earlier signs on the disease. Vicky |
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04-28-2007, 10:57 PM | #4 | |||
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Member
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Not only is it lost it's very disoriented. I used to smell things that didn't exist in the area.. One example was I would smell burning toast every night as I drove home from work. Sometimes I will smell something and the smell gets stuck in my head and I can smell it for days. Some colognes and perfumes do this. Fortunaltley I havn't experienced it with any negative smells. I think it affects our sense of taste as well. Strange disease ya know.
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I would never die for my beliefs because I might be wrong. Bertrand Russell |
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04-29-2007, 03:35 AM | #5 | |||
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Member
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Quote:
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04-29-2007, 08:49 AM | #6 | ||
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Member
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From what I've read in the medical literature (and this has been discussed before), the olfactory system is "ripe" for being "highjacked" by the dopaminergic system for it's ability to be transfomed into a dopamine producing area of the brain. In other words the cells of the olfactory system can be "turned on" by gene mechanisms to produce dopamine and develop dendrites to deliver the dopamine neurotransmitter to cells in the substantia nigra and other nearby structures in the immediate area in the forebrain. While this helps the dopaminergic system to function, it is a "last ditch effort" that the brain uses to get extra dopamine for the greater need of movement. Thus the sense of smell is "sacrificed" as it is considered by evolution to be "secondarily in neccessity" to the need for dopaminergic transmission. In this process the olfactory neurons lose their ability to function as they were designed for. I am surprised by this, as I would have thought smell to be more important than "taste". However, this may be a manifestation of the nature of the olfactoy bulb itself; it's ability to morph into a dopamine producing structure; it's abilities to produce outgrowths that reach the areas of dopamine uptake. cs
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04-29-2007, 09:23 AM | #7 | |||
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In Remembrance
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You all can't sense the odor, aroma, scent, perfume, fragrance, bouquet, whiff, pong (UK, informal), waft?
if you can't smell much of anything -then you can not taste of much of anything... I was told along time ago that I should take zinc, and I have no problems with my sense of smell. thankfully! and that the symptoms are actually caused by zinc deficiency. Zinc is found in all tissues and especially in the eye, kidney, brain, liver, muscle and reproductive organs. It aids the healing of burns, wounds and other minor skin disorders, is useful for bone development and maintaining a healthy resistance to disease and in the reduction of inflammation or body odour. Food Sources of Zinc Natural food sources of zinc include oysters, red meat and poultry, beans, nuts, whole grains, pumpkin seed or sunflower seeds. Herbs that contain zinc include alfalfa, burdock root, cayenne, chamomile, chickweed, dandelion, eyebright, fennel seed, hops, milk thistle, mullein, nettle, parsley, rose hips, sage, sarsaparilla, skullcap, and wild yam. Benefits and Functions of Zinc Zinc is needed for: Functioning of many (over 200) enzymes; Strong immune system; Zinc is an essential element in human beings, necessary for sustaining life. Deficiencies of zinc have marked effects on weight gain in animals. Zinc is found in insulin, zinc finger proteins, and such enzymes as superoxide dismutase. According to some sources, taking zinc tablets may provide some immunity against colds and flu, although this is disputed. Eyesight, taste, smell and memory are also connected with zinc and a deficiency in zinc can cause malfunctions of these organs and functions. Dosage You should be able to get all the zinc you need from your daily diet. This is approximately: 5.5 to 9.5 mg a day for men 4 to 7 mg a day for women What are the deficiency symptoms of Zinc? Too little zinc can result in enlarged prostate, impaired sexual functions, dandruff, hair loss, poor sense of taste and smell, and stretch marks that commonly appear after extreme growth spurts such as in pregnancy and adolescence. In males, zinc is important for the production of semen. Up to 5 mg of zinc is lost during ejaculation. Defiencies in zinc in males can lead to reduced sperm count and sex drive. Frequent ejaculations can lead to zinc defiency. Overdosage Signs of Zinc Taking high doses of zinc reduces the amount of copper the body can absorb. This can lead to anaemia and to weakening of the bones. Excessive intake is not a common problem but especially if zinc supplements are taken over an extended period of time, can reduce the absorption of Copper (so Copper supplements may also be appropriate). too much copper Wilson's disease! which the doctors rule out when dxd'ing PD. Zinc Deficiency Acrodermatitis enteropathica Metal fume fever
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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04-29-2007, 02:10 PM | #8 | |||
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Member
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Like Rosemary and Teresa I have smell hallucinations, have had them for years before dx, and I also suffer from lingering smells, and I mean suffer - good and/or bad smells seem to enter my brain, and after several days of breathing and inhaling the same smell, even a good smell becomes unbearable.
On the other hand, if I can avoid smelling perfumes and certain chemicals, my nose still works, and I can smell everything perfectly well. I can also taste everything except when I am tired. When I am tired, everything smells and tastes either like air and water, or everything smells and tastes completely wrong. Supposedly I have ordinary, idiopathic PD - (idiotic.........!) birte |
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04-29-2007, 04:21 PM | #9 | |||
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In Remembrance
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The detoxifying of heaving metals is what they are
doing for Autism -caused by vaccines with -"MERCURY" if the vaccines donot have to be refridgerated they have mercury in them this is a very informative link~ *lightbulb http://web.utk.edu/~ehss/pdf/metals.pdf
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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04-29-2007, 05:53 PM | #10 | |||
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In Remembrance
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Some random thoughts-
1) Odors are purportedly one of the strongest of triggers for memory. 2) If smell disappears early on and Lewy bodies show up years later yet still in advance of other anatomical change, what was going on during all those years between? 3) Maybe aromatherapy should not be dismissed so readily. 4) The mention of zinc- I had a mineral analysis done a year ago. The only thing that came in low was zinc.
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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