Re: [TMIC] Good Morning All
it is wonderful to hear that resemblances of rest have entertained your company Dalton. Not fearing any return of spasm but enjoying the moment is always refreshing. May we all be in our own maturity as these beautiful things we see in their maturity.the leaves of time we are,,,blessed with many colors. From: pat cooley patticoole...@gmail.com To: Dalton Garis malugss...@gmail.com Cc: Transverse Myelitis tmic-list@eskimo.com Sent: Saturday, October 8, 2011 10:54 AM Subject: Re: [TMIC] Good Morning All Dalton I am so glad you are getting some relief from those horrible seizures you experience. I am sure our emotions play a big part in our physical problems. I sure hope it continues. This time of the year is my favorite. I live in middle Wisconsin in the country. Our leaves are just so beautiful and I just love the smell of the crushed leaves on the ground. I just wish this couldl go on longer. It won't be long and our trees will be bare. But, then we have spring to look forward to. The hot weather doesn't bother me, but I sure do hate the cold. Patti - Wisconsin On Sat, Oct 8, 2011 at 9:36 AM, Dalton Garis malugss...@gmail.com wrote: I'm in; I have learned so much here. By the way, I went more than two weeks without a seizure attack, those fits that stiffened me up across the back so that I slid off the chair onto the floor like a pine board. It has been since 9 January 2010 when I got the first one and I have been gurneyed many times with seizures since. I got a bad one the other day, however, from the fantastic joy I felt being back in New England in the fall, with its pungent scents of wet leaves, and all the colors, and the sun beams playing in their midst. The pure joy just exploded in my head and I seized up. But since leaving that furnace country the Gulf Middle East, the spells and fits have become fewer. Only after a shower or heavy emotional or physical exertion do I have to worry about seizing up. Thanks, all, Dalton From: Patricia Cooley patticoole...@gmail.com Date: Sat, 8 Oct 2011 09:28:29 -0500 To: Transverse Myelitis tmic-list@eskimo.com Subject: [TMIC] Good Morning All Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 8 Oct 2011 07:30:39 -0700 I have been on this site since the summer of 2008. I am so glad to see more activity here. I am on the TM facebook sites, but I miss so many of the people here who don't FB. I hope we see a lot more postings from all of you. At times all the posting on FB is just over whelming. Patti - Wisconsin
Re: [TMIC] My son Chris OFF TOPIC
many prayers From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Saturday, October 8, 2011 8:50 PM Subject: Re: [TMIC] My son Chris OFF TOPIC Re: [TMIC] My son Chris OFF TOPIC So very sorry to read this! My deepest condolences. May you be granted strength and comfort in this difficult time. Akua MY SON CHRIS DIED LAST NIGHT. HE WAS DIABETIC AND DID NOT TAKE CARE OF HIMSELF. HE WAS 36 YEARS OLD. I DON'T KNOW HOW I WILL BE ABLE TO BURY HIM. THE LORD WILL MAKE A WAY SOMEHOW. MY SECOND DAUGHTER PAM DIED LAST DEC 1, 2010. SORRY I JUST NEED TO EXPRESS MYSELF JANE/SPLENDORA TX --
Re: [TMIC] Pyrrhic Victory?
Not sure about your area but where I live our local high school has a commuinity service requirement for the kids to graduate. That may be another place to check for help with no cost involved. Lynne --- On Sat, 10/8/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] Pyrrhic Victory? To: pjv1...@chartermi.net, PAMELA S subers...@msn.com Cc: jcs...@yahoo.com, a...@artfarm.com, TMC Group tmic-list@eskimo.com Date: Saturday, October 8, 2011, 11:03 AM Excellent idea - the churches are always looking for people they can help. Janice From: pjv1...@chartermi.net Sent: Saturday, October 08, 2011 8:30 AM To: PAMELA S Cc: jcs...@yahoo.com ; a...@artfarm.com ; TMC Group Subject: RE: [TMIC] Pyrrhic Victory? I have those same thoughts when I read the things Akua goes thru day to day. I remember the first time I went grocery shopping after TM. My 76 year old (at the time) Mom took me and a 9 year old boy carried the bags from the car to the house. I would do your grocery shopping if I lived near you. Akua, have you contacted a local church? Most people don't know where to find an individual who needs a helping hand. See if you local paper would start a column of people in need. Not financial, but physical labor needs. The paper might run it in their want ad columns free of charge to the person seeking help as a charitable endavor. Patti - Michigan On Thu, Oct 6, 2011 at 8:38 PM, PAMELA S wrote: No kidding! Akua; if I lived close by I would vacuum your floor. I can do that now. Pam ___ Date: Thu, 6 Oct 2011 04:39:41 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] Pyrrhic Victory? To: a...@artfarm.com; tmic-list@eskimo.com it is a sad thing that this is done in regulated areas as well as unregulated areas in our lives. this is the very mindset that has brought our country to the embarrassing financial situation we are in.waste,fraud,,greed greed greed. and we the people suffer loss of what would be good service because of it,and in the economical way we have to go we need service. service is costly but if it is a good service and done with dignity it doesn't matter what type of service,it adds quality to all our lives. the Christian bible has a book tagged proverbs and it is full of service suggestions that win every single time. Prosper and live long Akua,,I understand your struggle. Be it implied,imposed,self imposed,or whatever a struggle is a struggle and everyone doesn't look for the good of his fellow citizen. spread some honey out when ever you can,,it attracts worker bees. crap just attracts biting flies. God knows i have had the flies! ___ From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Thursday, October 6, 2011 1:32 AM Subject: [TMIC] Pyrrhic Victory? I have an aide come once a week for two hours. I would like more time and more help as those two hours are spent grocery shopping, so I get no help around the house. But I can't afford more. The Home Health Care agency charges $25 an hour for her and I was fortunate to be granted a subsidy from United Way, so I only have to pay half. But that's still $25 a week additional for groceries. They had a nurse come every six months. This I never understood, as she either harassed my aide and made me lose part of the precious two hours as she asked inane questions, or she came and asked me to show her my care plan. The last time the nurse was here in the spring, she insulted and threatened me. I swore she would not enter my house again and I wrote a letter about what occurred, but decided against sending it. Two weeks ago the nurse called me, and in her usual rude and cavalier way,left a message telling me told me she would be over the next day. I called and said would not be available. Then i called the agency and said that I did not want anymore dealings with this person and could they please find someone else to send. The head of the agency said they only had one person to do this. I said i didn't understand why this had to be done... why was a nurse necessary? I reminded her that i had used their services for 3 years now, that i was very happy with my aide, but was not going to voluntarily submit myself to insult and distress. The head went on to try to persuade me/dissuade me by telling me that their one other nurse covered another territory. To which i had nothing to say. This was their requirement and it made no sense to me. This week she called me and left a message saying call her. I really dislike messages that don't have information and when i returned the call-- 90 minutes later, she was to be out of the office for the next two days. I was directed to the second in command who said that i was going to be reclassified. Reclassified? I said i have one person,
[TMIC] How can a spouse help?
Dear TM support group, My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing. He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. Any advice would be greatly appreciated. Warm regards, Andrea
Re: [TMIC] How can a spouse help?
LYRICA !!!; USE LYRICA FAST. IT IS THE ONLY MED THAT STOPPED THE PAIN. THEN REMIND YOUR DEAR HUSBAND THAT WE ARE GIVEN A BODY IN WHICH TO GROW A SOUL. Dalton From: Andrea and...@cleverendeavours.co.uk Date: Mon, 10 Oct 2011 14:38:19 +0100 To: tmic-list@eskimo.com Subject: [TMIC] How can a spouse help? Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 10 Oct 2011 06:40:37 -0700 Dear TM support group, My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. Any advice would be greatly appreciated. Warm regards, Andrea
Re: [TMIC] How can a spouse help?
Andrea I am so sorry for the pain and suffering your husband and you are experiencing. I say you because even though it is your husband with TM, I know you suffer along with him. I am also a victim of TM and have been since 2008. Each one of us has different difficulties and pain. Some are very severe and like me it is always there but I have become used to it. I know so many people can't understand the pain as we may look very normal for the most part. Some are able to walk normally, and then some of us must use canes/walkers/wheelchairs. Is he under the care of a neurologist or pain specialist? You may have to try several to find one who is able to help him. We welcome all caregivers here as you need our support just as much as your hubby. Please feel free to ask all and any questions you may have. There is nothing too embarassing to ask as we have people here who can relate and may have advice for you. We also have a private Facebook group with quite a few of people from the UK. If you are interested, please let me know. Patti in Wisconsin .On Mon, Oct 10, 2011 at 8:38 AM, Andrea and...@cleverendeavours.co.ukwrote: Dear TM support group, ** ** My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. ** ** Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. ** ** Any advice would be greatly appreciated. Warm regards, Andrea ** **
Re: [TMIC] How can a spouse help?
Andrea, You have been going through hell and I am so sorry. Is he in contact with his neurologist very often? He sounds like he may need a change in meds. Most of us have had to change meds after finding one or two that don’t work well.There is a med for spasming which is Baclofen that I use. Some use another med. Also, I use Neurontin for nerve pain and it works well, but many have found greater relief with Lyrica. He needs to get with his neuro and try some new things or maybe the strength may need to be changed. He is probably intensely angry right now, and being his wife, you are catching it all. It is a huge adjustment that takes time.Most of us are on an antidepressant.I am on Zoloft, others take something else. Again, if he is already on something for depression and it is not helping, call the neuro and get the strength adjusted or change meds.Be persistent – if he doesn’t seem to help you, get another neuro. He is in his own hell right now too.The loss of his life as he has always known it is really tough to take. Stay in close touch with your doctors and don’t think that this is just the way it has to be. With the right meds, you can get improvement. Is he able to walk or care for himself at all?Please stay in touch with us, we all want to help. Janice From: Andrea Sent: Monday, October 10, 2011 8:38 AM To: tmic-list@eskimo.com Subject: [TMIC] How can a spouse help? Dear TM support group, My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. Any advice would be greatly appreciated. Warm regards, Andrea
Re: [TMIC] Pyrrhic Victory?
Maybe try Scout Troups'?? - Original Message - From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Monday, October 10, 2011 9:11:05 AM Subject: Re: [TMIC] Pyrrhic Victory? Not sure about your area but where I live our local high school has a commuinity service requirement for the kids to graduate. That may be another place to check for help with no cost involved. Lynne --- On Sat, 10/8/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] Pyrrhic Victory? To: pjv1...@chartermi.net, PAMELA S subers...@msn.com Cc: jcs...@yahoo.com, a...@artfarm.com, TMC Group tmic-list@eskimo.com Date: Saturday, October 8, 2011, 11:03 AM Excellent idea - the churches are always looking for people they can help. Janice From: pjv1...@chartermi.net Sent: Saturday, October 08, 2011 8:30 AM To: PAMELA S Cc: jcs...@yahoo.com ; a...@artfarm.com ; TMC Group Subject: RE: [TMIC] Pyrrhic Victory? I have those same thoughts when I read the things Akua goes thru day to day. I remember the first time I went grocery shopping after TM. My 76 year old (at the time) Mom took me and a 9 year old boy carried the bags from the car to the house. I would do your grocery shopping if I lived near you. Akua, have you contacted a local church? Most people don't know where to find an individual who needs a helping hand. See if you local paper would start a column of people in need. Not financial, but physical labor needs. The paper might run it in their want ad columns free of charge to the person seeking help as a charitable endavor. Patti - Michigan On Thu, Oct 6, 2011 at 8:38 PM, PAMELA S wrote: No kidding! Akua; if I lived close by I would vacuum your floor. I can do that now. Pam ___ Date: Thu, 6 Oct 2011 04:39:41 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] Pyrrhic Victory? To: a...@artfarm.com; tmic-list@eskimo.com it is a sad thing that this is done in regulated areas as well as unregulated areas in our lives. this is the very mindset that has brought our country to the embarrassing financial situation we are in.waste,fraud,,greed greed greed. and we the people suffer loss of what would be good service because of it,and in the economical way we have to go we need service. service is costly but if it is a good service and done with dignity it doesn't matter what type of service,it adds quality to all our lives. the Christian bible has a book tagged proverbs and it is full of service suggestions that win every single time. Prosper and live long Akua,,I understand your struggle. Be it implied,imposed,self imposed,or whatever a struggle is a struggle and everyone doesn't look for the good of his fellow citizen. spread some honey out when ever you can,,it attracts worker bees. crap just attracts biting flies. God knows i have had the flies! ___ From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Thursday, October 6, 2011 1:32 AM Subject: [TMIC] Pyrrhic Victory? I have an aide come once a week for two hours. I would like more time and more help as those two hours are spent grocery shopping, so I get no help around the house. But I can't afford more. The Home Health Care agency charges $25 an hour for her and I was fortunate to be granted a subsidy from United Way, so I only have to pay half. But that's still $25 a week additional for groceries. They had a nurse come every six months. This I never understood, as she either harassed my aide and made me lose part of the precious two hours as she asked inane questions, or she came and asked me to show her my care plan. The last time the nurse was here in the spring, she insulted and threatened me. I swore she would not enter my house again and I wrote a letter about what occurred, but decided against sending it. Two weeks ago the nurse called me, and in her usual rude and cavalier way,left a message telling me told me she would be over the next day. I called and said would not be available. Then i called the agency and said that I did not want anymore dealings with this person and could they please find someone else to send. The head of the agency said they only had one person to do this. I said i didn't understand why this had to be done... why was a nurse necessary? I reminded her that i had used their services for 3 years now, that i was very happy with my aide, but was not going to voluntarily submit myself to insult and distress. The head went on to try to persuade me/dissuade me by telling me that their one other nurse covered another territory. To which i had nothing to say. This was their requirement and it made no sense to me. This week she called me and left a message saying call her. I really dislike messages that don't have information and when i returned the
[TMIC] Donkey Story TM
This really isn't off topic because each and every one of us that is dealing with TM (in whatever way) needs to follow this donkey's way of thinking: One day a farmer's donkey fell down into a well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn't worth it to retrieve the donkey. He invited all his neighbors to come over and help him. They all grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down. A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw. With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up. As the farmer's neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off! MORAL : Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up. Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up. Remember the five simple rules to be happy: 1. Free your heart from hatred - Forgive. 2. Free your mind from worries - Most never happens. 3. Live simply and appreciate what you have. 4. Give more. 5. Expect less from people but more from God. You have two choices... smile and close this page, or pass this along to someone else to share the lesson . God bless us all! Emily Meyers Columbus, NJ image002.jpg
[TMIC] Beyond Words, a book about life with TM
Hi all, I have had TM since the turn of the century, the year 2000 that is. I , like you, found this listserve when I needed it most and found answers to questions, support and most of all others who were going through what I was and understood my pain---on many levels. One of my most valuable tips helped me be able to pee. Still, if i turn my head to the right and yawn I can urinate. Life's small miracles. I will be forever grateful. I am oxygen dependent, my lesion was at C2-6. As I read this morning's post from Andrea I am reminded of that black hole we all found ourselves in in the beginning. Such a hard place. And it is possible to crawl out of that hard place. I am an artist and over the years with TM I did a series of pen and ink drawings that reflected how I was feeling. I was fortunate to have had help from others in putting them into a book called Beyond Words, An Artful Expression of Chronic Pain and Grief. I would like to give anyone with TM one of my books. I know you will see yourself and your struggle in it. There is hope in the end. My life is good again and I am a stronger person. I have a website at beyondwordsthebook.com --it shows the book and few of the drawings. My address is Sue Zieke W6694 Ramsdell Rd. Spooner, Wi 54801. It costs me $4.62 to ship one book first class. If you would like one send me the postage and I will send you the book. We are survivors. Sue
Re: [TMIC] How can a spouse help?
On Mon, Oct 10, 2011 at 12:08 PM, Barbara H. barbara...@gmail.com wrote: Dear Andrea, I'm so sorry to hear that your family is going through this. It definitely takes a while to adjust. I would echo what others have said about seeing a neurologist to let him know whatever meds he is on aren't helping with the pain. It may lessen over time -- for me pain was only an occasional thing, not constant, but after 16+ years it's not a regular problem any more. Physical therapy helped me immensely with movement and balance -- I don't know if help in those areas would help with pain as well. I mainly just wanted to encourage you not to take his anger personally. Different people react differently to TM, and anger can be a stage of grief in adjusting to what he has lost. Should he take it out on you? No, and hopefully some day soon he will see that. But you are the closest person to him and the one with whom he can most easily let down his guard, so you tend to be the recipient. We're here for you -- whether you have questions or just need to vent. Barbara H. http://barbarah,wordpress.com On Mon, Oct 10, 2011 at 9:38 AM, Andrea and...@cleverendeavours.co.ukwrote: Dear TM support group, ** ** My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. ** ** Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. ** ** Any advice would be greatly appreciated. Warm regards, Andrea ** **
Re: [TMIC] My son Chris OFF TOPIC
My condolences to you and your family. God will make a way somehow just keep the faith. Ella
RE: [TMIC] How can a spouse help?
Hello Andrea; I know you are going to get lots of responses. I just lost the person who was my partner to death. However; I had been married before, and he didn't tolerate my problems well. Yes, people do look at you and say, but you look healthy. I've had this problem since 1992, with two subsequent episodes or flares that were debilitating. Yet, each time I went back to work at a certain point as an RN. You don't mention what your husband is trying. It sounds like he gets around. I always got to where I could walk again, but it was very fatiguing. And, the fatigue has never went away. Nor has the pain from the tight banding to the burning and tingling with frequent stabbing pains here and there. Anger...it happens to me if I take gaberpantin or Neuronitn. I've been told a lot of people have this reaction. Depression. It is so common with TM, I have a heck of a time convincing neurologists I'm not depressed. I really liked Cymbalta but I can't tolerate it or Lyrica due to my diabetes. But, it works really good for those who can tolerate it. Celexa or Lexapro helps a lot with my trouble concentrating and remembering things. I got to where I couldn't sleep. And, the twitching and jerking and inability to get comfortable can play havoc on ones sex life. Requip was the answer for me. I don't twitch near as bad. I used to take baclofen but it didn't work after a while. I take Vicodin for the burning in my feet. Sheets drive me nuts. And, with this last episode CPAP became necessary. Believe it or not, being able to breathe at night really improved my mood swings. It had never occurred to me that not breathing at night was a problem. I'm not that big. nuvigil gets me going in the day, but the physical fatigue remains. Cramping and charlie horse every night if I've been active for, I guess it's going on 20 years. But, if I can sleep good, it doesn't get on my nerves so bad. Bending, reaching under things, getting things from under the bed, make me dizzy. Dizzy equals sick or very irritable for me. I didn't realize that this was influencing me to avoid certain activities for awhile. Bottom line is there are some alternatives, but you probably have to be proactive. I've heard can't do anything and live with it or at least you're walking and you can squeeze and push on neuro checks from many doctors. And, that is frustrating for someone who is in constant pain and has no energy. (Vertigo is a miserable way to be, too.) But, finally, I have found something that works for me. And, it is a big relief. If I understood you right, you said 6 months. I have all three times saw changes at about 1 year. Hang in there. It is hard. You need a way to sound off and release frustration. Caregivers can become ill, too. Please look out for yourself. Pam Date: Mon, 10 Oct 2011 14:38:19 +0100 From: and...@cleverendeavours.co.uk To: tmic-list@eskimo.com Subject: [TMIC] How can a spouse help? Dear TM support group, My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. Any advice would be greatly appreciated. Warm regards, Andrea
RE: [TMIC] How can a spouse help?
Andrea, You are a special spouse - searching the 'net for answers and asking how you can help show how much you care for you husband and the future of your family. I have had TM for eight years and have constant pain. However, I enjoy my life in spite of it. I had a good neurologist who cared about my level of pain and suggested different meds and doses until we found a combination that kept the pain at a bearable level. Oddly, the first medication that I was prescribed when diagnosed with TM (alng with the steroid regimine) was an antidepressant. The doctor in the rehab hospital suggested it along with the all the therapy I needed. It took me 3 to 4 weeks before I admitted that I was in pain, because I thought the pain was a good sign that I was recovering from TM. Huh! I usually will not talk about my pain or give an honest answer. Oddly, I ended up seeking psychiatric help after having TM for six years. My husband and I were going thru numerous life changes and I needed professional help in understanding why I was loosing control of my life. My husband told me that he was jealous that I got to talk to someone and my therapist suggested that she see him in order to help me. We both benefitted from the therapy. The antidepressant that I take (Cymbalta) is also prescribed in the U.S. for pain so I get a double benefit from it. I hated hearing that people still had pain after years of TM and I thought that I was stronger than that and I would be one of those to beat this illness. Well, I am beating it every single day. However, I have had to reach out to other TMers for the day to day problems and to professionals for the medications and various therapies. There is no good answer to the how are you today question. Possibly you could ask instead - Is there anything I can do for you today? Inspite of TM I have a good life! There is hope that he will get better - I never got worse. Keep in touch. We are a caring group of people who are here to support each other. Patti - Michigan (USA) i On Mon, Oct 10, 2011 at 9:38 AM, Andrea wrote: Dear TM support group, My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. Any advice would be greatly appreciated. Warm regards, Andrea
Re: [TMIC] How can a spouse help?
It helps to be heard, so perhaps a support group would be helpful. I found the most comfort from people who said it's horrible, unfair and awful vs. those who inanely suggested that I cheer up, buck up, or for example sent me videos of limbless people dancing. I'm in a wheelchair and can't walk, and or move my legs -- but that doesn't mediate the utter insensitivity of so many, they don't know that on top of all this cann not, is a burning hell of pain, it HURTS constantly and unremittingly So it must be super hard for your husband with no external tell. Meditation has helped me, not even meditation to be honest, but reading about meditation and deep breathing. At onset, I could barely sleep for pain. I found pain relief in LDN -- low dose naltrexone. It's my only TM related drug and I'm very grateful for it. You're in the UK a place that I think has better and more thorough health care than has been my experience. Physical therapy, when I've gotten it, has been helpful. Acupuncture relieved pain. If i could walk, I would go swimming five times a week, I would sauna and hot tub/whirlpool -- a therapy inaccessible to me. Neuromuscular stimulation may help. Magnets may help. I think oxygen would help me, but I've yet to convince any physician to order it for me. You husband is fortunate to have a partner and family that cares. I don't. OTOH, I can imagine the daily rub of living with others who have your old self thier mind and expectations, expectations that you can no longer meet. So there is a daily psychological pain in disappointing others -- that's the only thing my aloneness spares me. I commend you for caring and reaching out on his behalf. May we all heal and be well. Akua --
RE: [TMIC] Pyrrhic Victory?
I've written the governor before and after he was elected, as well as every relevant legislator from congress to county. I've shared here the stories of asking scout troops for someone to shovel my sidewalks of snow-- for pay! and not getting any response. I also reported previously rolling past a parking lot full of buses with lifts -- for Pathways. I asked them if they would assist but as I'm not DD, they wouldn't. They and another local provider said they couldn't help me because of insurance. So then i called United Way and began to explore the idea of United Way undertaking the difference in insurance so that these existing, capitalized, nonprofits, might offer paratransit and the occasional support services. That got nowhere, which is what led to my now two year struggle to start the nonprofit the struggle is not in the administrivia, but in finding local people to serve on the board, at least long enough for me to file the papers but that's another story. The only untried suggestion and contact is HS guidance counselors. Though at the moment I'm a bit tapped out on cold calling and begging to get something I'll have to pay for. Looking through the human services stuff, it seems a lot of stuff is geared towards developmental disability, deafness, blindness, and homelessness. For people who become disabled, most of the resources are geared toward putting them back to work. Or helping them focus on being independent on their own. I'm not finding a lot of exceptions for folks who can't become independent with their disability. What makes the difference in a quad or para and a child who was born with CP? I'm not sure I get it. Does the governor have ombudsmen? This seems to be an oversight. --
