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netgypsy last won the day on August 10 2012

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About netgypsy

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  • Birthday 01/01/1970
  1. netgypsy

    Parkinson's & Falling Down

    There are several things that can make you fall. Sinemet relaxes both voluntary and involuntary blood vessels and can cause a drop in blood pressure. The thing that best helped me was one of those elastic back support belts you find at Home Depot or Lowes. I had particular problems with fainting after eating. I do two things - hydrate at meals - a full 15 ounces or so of water - and I tighten the belt up before I get up to walk away from the table. Check your blood pressure regularly and particularly check it when you lie down because it turned out mine went very high when I lay down so I use a nitroglycerine patch when I lie to down to keep it low. I take it off in the morning before I get up and wait a few minutes, drink a glass of water, then get up slowly. If I'm feeling faint I tighten the belt which I wear under my outer shirt but over a tshirt as it's not pleasant directly on the skin. Now if it's vertigo or balance you can go to vestibular or balance therapy. Find a really good facility that has this thing like an elevator where you wear a harness and it moves around. I did two months of vestibular therapy because I couldn't tell which way was "up". I was listing about 15 degrees off center and didn't even know it even though my family told me. The therapists had me sit on one of those large exercise balls and sit so I though I was vertical and then they showed me what I looked like in a mirror. It was amazing. I was leaning to one side. In two months I was all fixed and my balance was now fine and I didn't even need a cane. Also if you aren't taking enough sinemet your muscles won't respond adequately and although you know how to adjust to balance, you won't be able to. Mirapex and REquip frequently do not do a good job with the symptoms of PD so if you aren't satisfied that they are doing the job they should do, get back to your neurologist and request sinemet. It is the ONLY drug that really helps because you have a dopamine deficiency and it is the only drug that has dopamine in it other than Stalevo. Stalevo does too but it has an additional drug in it and I had problems with stalevo - I would drop to the floor after eating with no warning. It used to be thought that sinemet was toxic and cause PD to progress. THIS IS NOT TRUE. Check in the ask the Doctor section and read the study. Sinemet is for PWP like insulin is for a true diabetic. You don't have enough and you need to supplement. Dopamine is a natural substance your brain produces. PWP have a deficiency. So DON'T be afraid of sinemet. The dyskinesias are very minimal if you are dosed correctly. I'm happy to have my feet move a little because it means I can move normally - that the dopamine has made it to my brain. Good luck to finding a solution. Don't just try to live with it. All the PD symptoms can be controlled.
  2. netgypsy

    Good morning!!

    Operant conditioning - who has trained whom? I kept hearing this sound like a bass drum - a loud booming. I looked for a car going by with a loud sound system. None. I knew all the horses had food and hay. Then I looked out the window and saw my very first mare standing by the giant water tub which had been filled recently. I ran out quickly and looked. Sure enough it was empty and she was kicking it with her foot making it boom so loudly it could be heard all over the neighborhood. I apologized when I got the "look" from her and started the garden hose. And we think animals are our pets? More likely we're their servants.
  3. netgypsy

    New to site but not new to PWP

    We had a family member who also had bilateral dbs with the Foote/Okun team and they are amazing. He was soooo thrilled with the results. We lost him recently to a seizure that stopped his heart which had been damaged by rheumatic fever as a young man but the seizure had nothing to do with the dbs but an upper respiratory infection and fever he had the previous week. His only advice - get the dbs as soon as you can. The sooner the better. It really works but the tuneups are gradual so you don't get the full effect for several months so be patient but be sure to tell the docs what is going on.
  4. netgypsy


    Shame on them. My neurologist just said possible PD and sent me to a physical therapist who was fantastic. The one thing I would do differently was avoid agonists all together. You have the symptoms because you are deficient in a natural chemical, dopamine, and sinemet gives you this chemical. I waited far too long to start on it and got my life back when I did. SINEMET IS NOT TOXIC AND DOES NOT CAUSE pd TO PROGRESS. Check Dr. Okun's post on this. I would go on it with first symptoms that were problematic. I took azilect but it didn't help and made me faint but does help some people. Being a doctor does not mean you are knowledgeable about PD or that you are even very intelligent. The primary attribute is a good memory, not compassion or being a creative thinker. Fine a good movement disorder center PLEASE. You can get your life back.
  5. netgypsy

    (really)Alternate therapies

    This is like a diabetic trying to find an alternative for insulin. THERE IS NONE. BUT YOU CAN OPTIMIZE YOUR HEALTH WHICH HELPS EVERYONE. Sorry but this is so sad when sinemet works so well and if you exercise and stay active and tweak your dosage and watch your diet you can be NORMAL! Exercise is really really good for PWP. The better your overall health the better you'll do PD or no PD. Now there are foods with dopamine in them. A powder with a weird name and fava beans. But the powder has no known concentration so it's better to use regular sinemet as a rescue dose if you start shaking or freezing. Sinemet stops the freezing, the shaking, the drooling, the trouble swallowing and so, in the right dose if you really have PD. This is variable from person to person of course but it is the BEST MED OUT THERE FOR PD. IT IS NATURAL, MADE BY YOUR BODY. IT IS NOT TOXIC. IT DOES NOT CAUSE PD TO PROGRESS. You're just deficient in dopamine and need a boost. No it's not perfect but it works really well when done right. If it isn't working for you, change doctors.
  6. PLEASE READ DR. OKUN'S POST in ASK the DOCTOR on SINEMET IS NOT TOXIC AND DOES NOT CAUSE PD TO PROGRESS!!! Everyone I know who takes sinemet had dyskinesias and they are NOT a PROBLEM. They tell you the dopamine has made it to your brain. They don't make you writhe like Michael J Fox on a very old interview. He was overmedicated. In my case my right foot will tap a bit. It looks like I'm just a bit antsy or bored. It's very very slight and I welcome it because it tells me I can function normally. There are many ways you optimize your meds. All this stuff about 5 years and a time frame when when sinemet no longer works are totally BOGUS. PD is progressive. No matter what meds you take, it will progress. If you never take sinemet, just sit frozen in wheel chair, then start on sinemet it will work, but not as well as if you started it when you first had symptoms. It's like diabetes - tweaking the dosage is difficult but you can do it. Just like getting the right amount of insulin is tricky. You don't not take insulin because the disease is going to progress and you will have to adjust the dosage to control it and you might have side effects. At least if you overdose a bit on sinemet you don't die like you can with insulin. You'll just have a bit more foot tapping or hand tapping or whichever you happen to get with sinemet. Sinemet WORKS REALLY WELL. It just takes time to get the right dosage. We badly need a patch but since there isn't one, you just experiment until you get it optimized. FORGET ALL THIS CRAP about what sinemet is going to do to you. It's not the sinemet, it's the PD that is the problem.
  7. netgypsy

    Good morning!!

    Just checking back in after several months. We lost our family member who had the double dbs but not from that surgery. (We have four family members with PD) He had a freak combination of things happen over several months and a seizure stopped his heart. CPR was administered immediately but there was no electrical activity from his heart. It's possible that it happened because he had rheumatic fever as a young man and his pacing mechanism was damaged but he had just been cleared by his cardiologist after wearing a monitor for 24 hours. The family experience with his case causes us to make several recommendations that would have helped him. First of all as soon as symptoms become any kind of problem, take SINEMET. He also took agonists for too long, had compulsions from them and was not functioning well at all until he finally began taking sinemet. Second - if at all possible get dbs as young as you can. It made a huge difference with him. He was so pleased with how well he was functioning. The UF team is fantastic. The older you are, the less time you'll have to be normal. No not everyone is a candidate but they have an excellent screening program. There are generally very few problems with it as they are extremely careful and capable. Third - deal with your other health problems, particularly those common with PD such as vitamin and mineral deficiencies. He also had osteoporosis but it was treated successfully for a long long time. He did fall and break his femur but he tripped and landed so hard on a tile floor the impact was audible in the other end of the house. Fourth - if you have a fainting problem, hydrate and for immediate help, get one of those elastic back protection belts that use velcro to cinch them up. They really work until the water kicks in. Fifth - Constipation can KILL. Treat it aggressively. Another family member lost her mother because of it and the seizure that killed this PWP was brought on by constipation. He hyperventilated, then pushed hard and it brought on the seizure. His case was not due to a lack of treatment but to a brief but severe upper respiratory infection a week earlier where a fever caused him to be delirious and disoriented for a couple of days. He swallowed water but not his meds and this was not discovered until the next morning when the meds were on his pillow as he didn't swallow them. A freak occurrence. I'll put this in another thread but wanted to share it because he had bad advice on the meds in particular and didn't get the dbs soon enough in his opinion. Hope you guys are doing well and be sure to read Dr. Okun's post that says SINEMET IS NOT TOXIC AND DOES NOT CAUSE PD TO PROGRESS! AND IT WORKS REALLY WELL IF YOU REALLY HAVE PD. Good luck to all.
  8. netgypsy

    levodopa and dyskinesias

    I take between 300 and 400 mg of sinemet CR every 5 to six hours. If I feel a bit off before the next dose is due I'll add 50mg of regular sinemet. At night I take again 300 to 400 mg of sinemet CR. That said, I'll usually notice my right foot tap a bit when it kicks in. It looks like I'm impatient so it's not bothersome and in fact I look forward to it happening because it means I'll be pretty normal for a while. I really like the CR a LOT better but you do have to be careful you don't overdose on it. Even with six hour intervals it can build up in the late afternoon and I'm most annoying when I'm overdosed. My major problem has been fainting because the sinemet not only loosens my voluntary muscles but also all the rest and my blood pressure drops, especially after eating. This is managed by drinking a glass of water and sometimes I wear one of those elastic back belts. If you adjust your diet and timing of eating you can keep your sinemet does down fairly low and be quite normal. I used to take 200mg sinemet CR every two hours but I was pretty overdosed by the afternoon and I've been able to cut back a lot and do just fine. No agonists. I wish I had never taken an agonist. Had terrible problems with them and stayed on them far too long. Sleepy, stupid and compulsive on agonists as well as having all the PD symtoms. You don't know just how badly you are functioning with agonists until you switch to sinemet. It's unreal.
  9. netgypsy


    You can't imagine how much better you will think and function if you get off mirapex and go on sinemet. It is old science that sinemet cause PD to progress faster. It doesn't. Not taking dopamine/sinemet when you have a dopamine deficiency is like telling a diabetic not to take insulin until they reach a certain age. Silly. I lost three years of my life to an agonist - requip - and I can't get them back and they caused my health to deteriorate and I also had major compulsions. It took me six months to get off requip because of the terrible anxiety and just getting the sinemet dosage optimized. More and more neurologists are advising their young onset patients to go on sinemet. The problem is not the drug, it's the delivery system which is your digestive system so you do have to time your eating, watch what you eat and so on but it is just soooo much better to be able to move normally, think normally, not have to chug all sorts of laxatives, no longer did I have swallowing problems. It makes me so angry that I wasn't properly informed about sinemet and had all those old ideas about it causing PD to progress so I was afraid to take it. Sinemet WORKS and works well. If the agonists work without serious side affects, GREAT. If they don't, there is something MUCH BETTER available and change doctors if they don't agree.
  10. This is like telling a diabetic to avoid taking insulin before 70. Makes no sense whatsoever since there is no hard evidence that taking sinemet either causes PD to progress or in any way reduces the quality of life. Many young onset PWP are taking sinemet at very young ages because quite frankly it's the only thing that really works. I wish I had gone to sinemet much earlier than I did. i lost three years of my life to Requip. It makes many many people sleepy and stupid and pretty much on autopilot and we won't even go into the compulsions it causes. I sure would change movement disorder centers FAST. I went on sinemet much earlier than 70 and got my life back. Be careful cutting back on requip and the other agonists too. They can cause terrible anxiety attacks. I was a basket case for about six months making the change and nearly drove my SO crazy with anxiety problems. Many neurtologists are starting PD patients on sinemet just as soon as PD symptoms cause any problems with quality of life. It WORKS and the side effects can be minimized by optimizing your health, watching diet and and adjusting dosage until it's right.
  11. netgypsy

    Ingesting Stalevo

    WE have a family member who does the same thing - chews sinemet CR's. The only thing we have been able to do is give them one at a time. It is is swallowed whole we can give half of another. If it gets chewed we just don't give any more for about 4 hours and we give food immediately to slow it down a bit since it's a bit more than the normal regular sinemet dosage for this person. This isn't perfect but works fairly well. For short acting sinemet it's easy to dissolve them in soda, applesauce, apple/cherry butter which is really sticky, and a number of other things - even ice cream. you can dissolve them in less than 1 ml of water, then mix with whatever the person likes. We have prescriptions for both the controlled release and the regular so we can adjust when we have a problem which is usually when the person is sleepy or very very tired. So I would suggest that you use a dosage of stalevo that is low enough so that if it dissolves or is chewed, it will be equivalent to the 3 hour regular sinemet dosage. then you don't have to worry when it happens. Good luck and come on over to the open forum and let us know what you try and how it works because we all have these problems when we get brain fog and our caregivers/partners/SO's are always happy to hear new strategies to use on their not always cooperative loved ones with PD
  12. netgypsy

    Temporary or Short Term use Medications

    Something for both of you to think about. Would it be reasonable for a diabetic to cut back on insulin below the amount needed to properly handle their nutritional needs? No it wouldn't be. Yes the diabetic can reduce sugar and carb intake, eat a healthy diet, exercise and so on but the diabetic is MISSING A NATURAL SUBSTANCE that is found in a normal person. The same thing is true of a person with Parkinson's. Sinemet (not requip) provides the NATURAL CHEMICAL YOUR BRAIN IS MISSING. It is NOT a DRUG like penicillin, used to kill bacteria or something. IF you really have PD, you are MISSING NATURAL BRAIN CHEMICAL and sinemet provides it. You will overall be healthier IF YOU INTAKE the CORRECT amount of dopamine. And this is the problem with PWP. Unfortunately the delivery system is flawed because Parkinson's affects the digestion as well as everything else - slows it down - so the chemical does not always get to the brain in the needed amount BUT you CAN optimize it with several tricks, use a sinemet CR which lasts from 6 to 8 hours, tweak your diet and timing of your food, to get the best possible function of your body. If you were deficient in vitamin D, wouldn't you take a supplement or get a bit more sun eat more foods with vitamin D in them? It's the same thing with PD. You are deficient in dopamine. It's that simple. Sinemet provides dopamine. Again it's that simple. It doesn't cause PD to progress faster, it doesn't make your life shorter and the side affects CAN BE MANAGED. There are people on here who have been taking sinemet for 20 years or more who are running marathons. Notice I didn't say winning them but I've never been able to finish a marathon and I've always been very athletic and active so this tells you that you can take sinemet for many many years and it never stops working. Yes it's very tricky to get your dosage optimized but you CAN DO IT and keep your life normal. Life is progressive and so is PD. All you can do is optimize your health in all possible ways and take exactly the amount of sinemet required for your body to function normally. And do look into dbs. It does work really well if you have good response to dopamine. Good luck and come on over to the young onset and open forums. A lot of your questions will get answered there also. Aren't we lucky that Dr. Okun and others are willing to take the time to help us with this ever changing challenge we face daily.
  13. netgypsy

    Lessons Learned From Falls in PD

    I fall a lot and was once asked by a medical professional why I didn't use a cane or walking aid. I told her "Because when I need it I wouldn't know what to do with it or I wouldn't think I needed it, and most of the time I don't need it." The problem is med failure which means poor coordination and brain fog simultaneously, or the superman syndrome where you aren't aware that you're impaired because you feel great. WHERE IS THAT SINEMET PATCH????? Using the digestive system as a delivery vehicle is really dumb when the problem it is designed to help causes digestive system malfunction. How about an inhaler??? Suppository???? Mouth tissue absorption??? Even a tiny pump like diabetics have would be preferable to never knowing when you'll have med failure.
  14. Family member was prescribed protonix for possible GI bleed. After about three weeks he had four seizures over a six day period lasting about 15 seconds each. We stopped the protonix but today he had a shaking episode that lasted nearly an hour. He was conscious and lucid. He could control his body during the episode. It was very similar to when he accidentally took 3 sinemet CR's a couple of years ago. My question is, how long after ceasing a medication can it still cause a seizure. He is also on lovenox, folate, B12, milk of magnesia, calcium citrate plus D and calcitriol for low D levels and sinemet CR for PD, nitroglycerine patch for supine hypertension.) Thanks!
  15. A family member with bilateral dbs gpi recently was suspected to have a bleeding ulcer and was treated with protonix. After about three weeks on protonix he had four seizures - about 15 seconds in duration - included loss of consciousness over a period of six days, ending on Sunday Oct 30. His temperature varied from 100.6 to 99.6,was only elevated for perhaps 24 hours and he had no seizure during the time it was elevated but he had mild bronchial congestion but didn't feel ill. He had a flu shot a couple of weeks ago. After reading the lit. on protonix which indicated it could cause seizures, the drug was stopped two days ago and there have been no more seizures of that type but today he had a shaking episode that lasted nearly an hour. He was conscious and lucid. The only time he's had this type of shaking was when he took three sinemet CR's at once. Could the protonix have caused this shaking episode or could it be because he inadvertently chewed a single sinemet CR. He seems to be much more sensitive to sinemet in the last few months. We have lowered his sinemet intake to about 2/3 of what it was before. His last DBS was six months ago. thanks for any additional advice on this strange occurrence. He is currently wearing a holter monitor to check his heart reaction to these episodes and to exercise and his GP is ordering an MRI of the brain but we want to be sure we haven't missed something they should be checking.