Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Jim & Peg: Fred doesn't have the heavy feeling, but not being able to roll over in bed by himself, he hasn't been able to do for along time now. He said it's not really a feeling of being heavy , it's more a feeling of being paralysis. Take Care Vera ************************** Members of the Shy Drager List, Peg has been complaining for the last week or so about feeling "heavy." She says this is different from feeling tired or feeling faint. She says she is having a hard time moving her arms and legs and a hard time rolling over in bed. I can still get her up and get her to the bathroom but little else. Have any other caregivers had patients who complained about being heavy. Any other thoughts. Peg and Jim from Guam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Dear Jim: Bob complained about a "heavy feeling" quite some time ago. He used to toss and turn, snore and take all the covers by pulling them to him and turning over. He has not turned over in bed for almost 3 years and lays so quiet that I sometimes get up and worry and make sure he is breathing. He can't even put his legs over the side without my help. It seems incredible that he can walk 4 or 5 steps with me holding on his safety belt (sort of safety - it's up under his armpits) and lately he has even gone as many as 10+ steps. Everybody progresses differently but the heavy feeling went on for a while and he didn't want to move much after that. For a man who tossed and turned he doesn't even move in his hospital bed. Take Care, Pat from Framingham MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Jim- My legs feel like red \wood trees when I wake. i do 30-45 minutes (same routine; some days it takes longer) f exercise before I even try, with help from Terri, to get out off bed. One of ithe best is dragging (alternating legs) my foot up the bed toward my butt, which requiree lifting the knee. The first one is murder but they get easier over 20 repetitions. Maybe this will help. Good luck and best regards. Say Hi to Peg. Terri sends hugs. Moller Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 The feeling of heavy has been a big complaint of Speedy . He feels as though his feet a legs weigh 100's of pounds each. He has not been able to roll over for about 2 years. Marilyn > > Reply-To: shydrager > Date: Wed, 26 Jun 2002 19:05:25 +1000 (GST) > To: shydrager > Subject: Feeling " heavy " > > Members of the Shy Drager List, > > Peg has been complaining for the last week or so about feeling " heavy. " She > says this is different from feeling tired or feeling faint. She says she is > having a hard time moving her arms and legs and a hard time rolling over in > bed. I can still get her up and get her to the bathroom but little else. > > Have any other caregivers had patients who complained about being heavy. Any > other thoughts. > > Peg and Jim from Guam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 Greetings Carol, > His has come and gone from time to time > without any intervention. Ditto. =jbf= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Bill and Deborah: First off, two 25/100s is not a large dose of Sinemet.Ken took that much at once and more for many years. It is possible to make Sinemet into a liquid which will work faster that the pill alone. I am not sure of the formula, but many people with Parkinson's use it, and I will get it and post it. I think it might be even more effective than melting them in your mouth before swallowing them. I do know that some people have found them whole in their stools which indicates they were no absorbed. These are the people whose doctors have suggested using the liquid form. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 You are not alone with this feeling. I often describe it to as someone having filled my arms and legs up with concrete. Too heavy to lift. It is much worse the day before a rain storm or when the barometric pressure is changing in a downward direction. I have to get to move my legs or arms for me. It reminds me of the actors/actresses in Awakenings...where they were frozen in place, unable to move, because of their lack of Dopamine. The heaviness makes me feel like a statue. Unable to move regardless of what level of discomfort my body has frozen in. Legs to heavy to support my weight, head to heavy to hold up, arms to heavy to move and hands too heavy to hold a glass. It is a terrible feeling. The ONLY thing that I have found to work for me in this situation, and it is just a temporary fix, is to let 2 regular Sinemet 25/100's melt under my tongue. I'm usually able to move in about 15-20 minutes once I do this. I'm not a doctor and am not telling anyone that they should try this. Talk to your physician before trying this. I'm just letting you know what has worked for me. I think the heaviness is a sudden loss of dopamine and that is why the Sinemet works. Hugs, Deborah aka Tenacity --------------------------------------------------------------------- Members of the Shy Drager List, Peg has been complaining for the last week or so about feeling " heavy. " She says this is different from feeling tired or feeling faint. She says she is having a hard time moving her arms and legs and a hard time rolling over in bed. I can still get her up and get her to the bathroom but little else. Have any other caregivers had patients who complained about being heavy. Any other thoughts. Peg and Jim from Guam _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Deborah, Who told you to let 2 25/100's melt under your tongue? That is for nitro pills, but I have not heard of it for MSA or even PD. Sinemet is hard on teeth I know. Taking two 25/100's by mouth and even swallowing them, should give anyone a sudden jolt in 20 minutes. Talk to your doctor about giving you Comtan with a regular Sinemet, too much carbidopa and levodopa can cause unwanted side effects. Sinemet in large doses tends to cut the useful life of it's ability to help you and the minimum is recommended. Not too that they were giving high doses in Awarkenings and the people only responded for a short time before losing the help it gave them. That was a true story. Take care, Bill Werre ------------------------------------------------------------------------------ Deborah Setzer wrote: > You are not alone with this feeling. I often describe it to as > someone having filled my arms and legs up with concrete. Too heavy to lift. > It is much worse the day before a rain storm or when the barometric > pressure is changing in a downward direction. I have to get to move > my legs or arms for me. > > It reminds me of the actors/actresses in Awakenings...where they were frozen > in place, unable to move, because of their lack of Dopamine. The heaviness > makes me feel like a statue. Unable to move regardless of what level of > discomfort my body has frozen in. Legs to heavy to support my weight, head > to heavy to hold up, arms to heavy to move and hands too heavy to hold a > glass. It is a terrible feeling. > > The ONLY thing that I have found to work for me in this situation, and it is > just a temporary fix, is to let 2 regular Sinemet 25/100's melt under my > tongue. I'm usually able to move in about 15-20 minutes once I do this. > I'm not a doctor and am not telling anyone that they should try this. Talk > to your physician before trying this. I'm just letting you know what has > worked for me. I think the heaviness is a sudden loss of dopamine and that > is why the Sinemet works. > > Hugs, > Deborah aka Tenacity > --------------------------------------------------------------------- > Members of the Shy Drager List, > > Peg has been complaining for the last week or so about feeling " heavy. " She > says this is different from feeling tired or feeling faint. She says she is > having a hard time moving her arms and legs and a hard time rolling over in > bed. I can still get her up and get her to the bathroom but little else. > > Have any other caregivers had patients who complained about being heavy. Any > other thoughts. > > Peg and Jim from Guam > > _________________________________________________________________ > Join the world’s largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Barbara, I think " liquid Sinemet " was essentially orange juice (8 oz) with a 25/100 Sinemet and about 10 mg of vitamin C all disolved in a glass. I would add a packet of Citrocel or Metamucil to fight constipation. Originally they made up a whole days dose in the morning but that creates some problems with equal dosing. If you drop a Sinemet into a glass it dissolves within seconds so I don't see how it could go through the system whole. However a fiber pill will not dissolve in water usually. Liquid Sinemet DOES get into the system faster. Most people with MSA have less response to Sinemet as they go over 8 pills (25/100) a day. But that is subjective from people I have talked to here on the site. Remember that Ken had LBD which is closer to PD than MSA. And more responsive to Sinemet. Our neuro also tried to keep Charlotte's Sinemet as low as possible yet enough to fight rigidity. Many people with PD even have less response to levadopa after 10 years of use. Comtan helps it get into the brain and turn to dopamine which is want actually helps you. Take care, Bill Werre ================================== kmcrae@... wrote: > Bill and Deborah: > First off, two 25/100s is not a large dose of Sinemet.Ken took that > much at once and more for many years. It is possible to make Sinemet into a > liquid which will work faster that the pill alone. I am not sure of the > formula, but many people with Parkinson's use it, and I will get it and post > it. I think it might be even more effective than melting them in your mouth > before swallowing them. I do know that some people have found them whole in > their stools which indicates they were no absorbed. These are the people > whose doctors have suggested using the liquid form. > Barbara > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Bill, My former neuro Dr. Jankovic in Houston was the one who told me to use the regular Sinemet sublingually when freezing episodes or extreme rigidity occurs. (thus the heaviness) I take Sinemet CR 50/200 every 4 hours. Comtan does no good for me at all. Tried it more than one time for several months. No definable difference between Sinemet w/or w/o Comtan. Reduced the dosage of Sinemet CR to 25/100 when I was on Comtan... no benefit. I only have minimal effect of Sinemet and because of all of the other problems that I have had with medication, it is the only med I take for the PD+ symptoms. My other 2 meds are to prevent hives from taking Sinemet. Thus, I can find no relief from my constant pain. Hugs, Deborah ----------------------------------------------- Deborah, Who told you to let 2 25/100's melt under your tongue? That is for nitro pills, but I have not heard of it for MSA or even PD. Sinemet is hard on teeth I know. Taking two 25/100's by mouth and even swallowing them, should give anyone a sudden jolt in 20 minutes. Talk to your doctor about giving you Comtan with a regular Sinemet, too much carbidopa and levodopa can cause unwanted side effects. Sinemet in large doses tends to cut the useful life of it's ability to help you and the minimum is recommended. Not too that they were giving high doses in Awakenings and the people only responded for a short time before losing the help it gave them. That was a true story. Take care, Bill Werre ------------------------------------------------------------------------------ Deborah Setzer wrote: > You are not alone with this feeling. I often describe it to as > someone having filled my arms and legs up with concrete. Too heavy to lift. > It is much worse the day before a rain storm or when the barometric > pressure is changing in a downward direction. I have to get to move > my legs or arms for me. > > It reminds me of the actors/actresses in Awakenings...where they were frozen > in place, unable to move, because of their lack of Dopamine. The heaviness > makes me feel like a statue. Unable to move regardless of what level of > discomfort my body has frozen in. Legs to heavy to support my weight, head > to heavy to hold up, arms to heavy to move and hands too heavy to hold a > glass. It is a terrible feeling. > > The ONLY thing that I have found to work for me in this situation, and it is > just a temporary fix, is to let 2 regular Sinemet 25/100's melt under my > tongue. I'm usually able to move in about 15-20 minutes once I do this. > I'm not a doctor and am not telling anyone that they should try this. Talk > to your physician before trying this. I'm just letting you know what has > worked for me. I think the heaviness is a sudden loss of dopamine and that > is why the Sinemet works. > > Hugs, > Deborah aka Tenacity > --------------------------------------------------------------------- > Members of the Shy Drager List, > > Peg has been complaining for the last week or so about feeling " heavy. " She > says this is different from feeling tired or feeling faint. She says she is > having a hard time moving her arms and legs and a hard time rolling over in > bed. I can still get her up and get her to the bathroom but little else. > > Have any other caregivers had patients who complained about being heavy. Any > other thoughts. > > Peg and Jim from Guam > > _________________________________________________________________ > Join the world’s largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Deborah, Where is the pain? Have they identified what is causing the Pain? Pain is NOT a primary symptom of MSA. It is usually a secondary symptom caused by dystonia. If you take a Sinemet 50/200 CR AND within 4 hours take two regular Sinemet 25/100's - that is more levadopa than I have ever heard of anyone (including Ken ) taking. Do you get dyskinesia (involuntary movement) after taking the Sinemet under the tongue? What are the other meds you take to prevent hives? Many people end freezing by using alternate methods - I have seen someone just put their foot in front of a frozen patients foot and askk them to step over it. Another person uses a laser pointer to put a spot on the ground to step over. On pain, most here have been at least somewhat sucessful with anti-spasm or anti-cramp meds. Take care, Bill Werre ---------------------------------------------------------------------------- Deborah Setzer wrote: > Bill, > > My former neuro Dr. Jankovic in Houston was the one who told me to use the > regular Sinemet sublingually when freezing episodes or extreme rigidity > occurs. (thus the heaviness) I take Sinemet CR 50/200 every 4 hours. Comtan > does no good for me at all. Tried it more than one time for several months. > No definable difference between Sinemet w/or w/o Comtan. Reduced the > dosage of Sinemet CR to 25/100 when I was on Comtan... no benefit. I only > have minimal effect of Sinemet and because of all of the other problems that > I have had with medication, it is the only med I take for the PD+ symptoms. > My other 2 meds are to prevent hives from taking Sinemet. Thus, I can find > no relief from my constant pain. > > Hugs, > Deborah > ----------------------------------------------- > > Deborah, > > Who told you to let 2 25/100's melt under your tongue? That is for nitro > pills, > but I have not heard of it for MSA or even PD. Sinemet is hard on teeth I > know. Taking two 25/100's by mouth and even swallowing them, should give > anyone > a sudden jolt in 20 minutes. Talk to your doctor about giving you Comtan > with a > regular Sinemet, too much carbidopa and levodopa can cause unwanted side > effects. Sinemet in large doses tends to cut the useful life of it's > ability to > help you and the minimum is recommended. Not too that they were giving high > doses in Awakenings and the people only responded for a short time before > losing the help it gave them. That was a true story. > > Take care, Bill Werre > > ------------------------------------------------------------------------------ > > Deborah Setzer wrote: > > > You are not alone with this feeling. I often describe it to as > > someone having filled my arms and legs up with concrete. Too heavy to > lift. > > It is much worse the day before a rain storm or when the barometric > > pressure is changing in a downward direction. I have to get to > move > > my legs or arms for me. > > > > It reminds me of the actors/actresses in Awakenings...where they were > frozen > > in place, unable to move, because of their lack of Dopamine. The > heaviness > > makes me feel like a statue. Unable to move regardless of what level of > > discomfort my body has frozen in. Legs to heavy to support my weight, > head > > to heavy to hold up, arms to heavy to move and hands too heavy to hold a > > glass. It is a terrible feeling. > > > > The ONLY thing that I have found to work for me in this situation, and it > is > > just a temporary fix, is to let 2 regular Sinemet 25/100's melt under my > > tongue. I'm usually able to move in about 15-20 minutes once I do this. > > I'm not a doctor and am not telling anyone that they should try this. > Talk > > to your physician before trying this. I'm just letting you know what has > > worked for me. I think the heaviness is a sudden loss of dopamine and > that > > is why the Sinemet works. > > > > Hugs, > > Deborah aka Tenacity > > --------------------------------------------------------------------- > > Members of the Shy Drager List, > > > > Peg has been complaining for the last week or so about feeling " heavy. " > She > > says this is different from feeling tired or feeling faint. She says she > is > > having a hard time moving her arms and legs and a hard time rolling over > in > > bed. I can still get her up and get her to the bathroom but little else. > > > > Have any other caregivers had patients who complained about being heavy. > Any > > other thoughts. > > > > Peg and Jim from Guam > > > > _________________________________________________________________ > > Join the world’s largest e-mail service with MSN Hotmail. > > http://www.hotmail.com > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Greetings Bill! I concur that most of my pain is from cramping muscles. And yes, I use Zanaflex to help with that. However, especially with MSA-C, or the OPCA form, peripheral neuropathy is not unusual. This can lead to TERRIBLE tingling and lightning pains. I quote this from the emedicine.com article on Sporadic OPCA: http://www.emedicine.com/neuro/topic282.htm Here are two specific quotes within it, which seem to perfectly describe my symptoms: " Physical: Cerebellar signs and extrapyramidal signs are the predominant signs of OPCA and the defining features of SPA. In addition, peripheral neuropathy is common... " " Nonpyramidal signs, such as amyotrophy, fasciculations, peripheral neuropathy, lightning pains, and pes cavus, are more common in sporadic OPCA than familial OPCA... " Perhaps it's not the sharp pain of muscle cramps, or the chronic pain of someone with cancer. But trust me. This tingling is awful when it gets bad. There is no where to go to get away from it. Neurontin helps. But it persists in spite of Neurontin. But I do admit, this does not seem to be terribly common for most folks with MSA. And for that I am grateful, since I would not wish it on anyone. You will also note in that article: " Autonomic failure is associated more commonly with sporadic OPCA than familial OPCA. " " Postural hypotension may predominate among the clinical features. " So, there is a clear connection with MSA, even if MSA-C is not diagnosed. You also mention about freezing episodes and some assistive techniques. Though I would pass along something interesting I found. Some assistance dog agencies train their dogs to help Parkinson's patients for the same problem. The dog is trained to tap the foot of the person that freezes. The light tap causes the person to reflexively lift their foot. This seems to do the trick. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
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