RE: [TMIC] MS
Hi Janice - TM - 8/2002 then MS - 2/2008 BERNARD BUTCHER From: Janice [mailto:jan...@centurytel.net] Sent: Thursday, March 12, 2009 7:04 PM To: transverse myelitis Subject: [TMIC] MS I am curious to know how many of you with TM also are dealing with MS. I know there are similarities between the two, but I think some of you may have actually been diagnosed with both. One first and later on, the other. Just curious, Janice
RE: [TMIC] Implantable pumps
I have had my baclofen pump for about a year and a half now. I dont think it works any better at controling the spasms than the oral baclofen does, but I dont have the brain fog as bad as I did when taking the pills. The main problem I have with the pump is the cost. My insurance covers 80% of cost so every time I have to go in for a refill (every three months) it costs me about $350. Plus I have to drive about 150 miles round trip to have it filled and / or adjusted. The level I am at right now is not as effective as I would like, but when we tried turning it up I was unable to empty out my bladder so had to go back down. As far as infections have had no problems there. But the surgery itself was miserable. Between the almost 6 incision in the front where the actual pump is and the 3 incision on back where the catheter was inserted into spine I was in alot of pain for the first week. It is also very difficult to find cloths that dont cling to the pump and make it stand out like a sore thumb. The pump has to be replaced every 5 years, and when that time comes I don't think I will have another one put in, will just have them take this one out. Lynne From: gor...@earthlink.net [mailto:gor...@earthlink.net] Sent: Thursday, March 12, 2009 12:49 PM To: tmic-list@eskimo.com Subject: [TMIC] Implantable pumps I want to get some feedback on the implantable pump (intrathecal) that provides meds directly into the spine. Any problems with infection? Cost on Medicare - 80/20 or 100% ? Convenient to have, or a pain with upkeep, maintenance, whatever problems you may have had? Did it work (regardless of the med, but it would be nice to know)? I am looking at pain relief, and probably anti-spasmodic being delivered via this device. Thanks for your input. mt
Re: [TMIC] Implantable pumps
I don't have a pump but are you asking about a Baclofen pump? In a message dated 3/12/2009 12:49:47 P.M. Eastern Daylight Time, gor...@earthlink.net writes: I want to get some feedback on the implantable pump (intrathecal) that provides meds directly into the spine. Any problems with infection? Cost on Medicare - 80/20 or 100% ? Convenient to have, or a pain with upkeep, maintenance, whatever problems you may have had? Did it work (regardless of the med, but it would be nice to know)? I am looking at pain relief, and probably anti-spasmodic being delivered via this device. Thanks for your input. mt **Worried about job security? Check out the 5 safest jobs in a recession. (http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare0002)
[TMIC] Mottos
Trudy said in the How to Dance in the Rain thread, When I was first injured someone I had never met sent me a book called You Gotta Keep Dancin by Tim Hansel That's my motto! I fall down, I get up and I keep on dancing!!! For some reason that brought to mind something that's often said at our house. I still have balance issues, so sometimes I'll be swaying almost too far over, and my oldest son will say, Stay upright! And I'll say, That's one of my goals in life! I thought it would be fun to share -- anyone else have any mottos or regular sayings around your house? Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1220439616x1201372437/aol?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID %3D62%26bcd%3DfebemailfooterNO62)
[TMIC] I just talked to Jude
She is doing pretty good and says hello to all. I'd say she is doing 'fine' (told me to hold on while you hear all this kissy kissy noise), she was telling her husband goodbye. LOL Ella **Worried about job security? Check out the 5 safest jobs in a recession. (http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare0002)
Re: [TMIC] Jude is back in the hospital
I did and she thanks you ..Ella In a message dated 3/13/2009 8:45:15 A.M. Eastern Daylight Time, jillybean60...@yahoo.com writes: When you talk to her please tell her I said Hi and that I will be praying for her! **Worried about job security? Check out the 5 safest jobs in a recession. (http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare0002)
[TMIC] Transportation Survey
As I am paralyzed by TM and in a manual wheelchair, most of my hell has been around the lack of transportation and access. The barriers magnify the pain... when there is no barrier, there is no pain... anyway, in case any of you are similarly challenged, I thought you might be interested in this. Most of my time is spent writing and fighting for access yet to be gained In conjunction with a grant received from the Federal Transit Administration, Meeting the Challenge, Inc. is conducting a national survey designed to collect information from people with disabilities regarding their experiences with public transportation. Information gathered will be used to determine what barriers still exist in public transportation for people with disabilities and will be used to create Americans with Disabilities Act (ADA) technical assistance materials directed toward alleviating those barriers. This on-line survey can be accessed from this link: http://mtcinc.transit.sgizmo.com/http://mtcinc.transit.sgizmo.com . It will take from 5 to 15 minutes to complete. If you know someone who does not have internet access and would like to participate the survey can be completed by phone by calling Meeting the Challenge at 800-864-4264 (select menu choice #2), Monday through Friday between 9 AM and 4 PM (MT). If you prefer a paper copy of the survey, call the same phone number. Responses to the survey will be collected through March 31. Please forward this e-mail to any individuals with a disability or to any groups serving individuals with disabilities that you feel would be appropriate respondents. We thank you for your participation and assistance! Cristi L. Harris Special Projects Director Meeting the Challenge, Inc Colorado Springs, CO (719) 444-0252 ext. 108 char...@mtc-inc.com mailto:%20char...@mtc-inc.commailto:%20char...@mtc-inc.com -- http://www.akuadesigns.etsy.com
Re: [TMIC] I pray
beautiful ...brings peace and love to my heart. From: kimr1...@bellsouth.net kimr1...@bellsouth.net To: tmic-list@eskimo.com Sent: Friday, March 13, 2009 1:41:10 PM Subject: [TMIC] I pray As I sat relaxing I decided to talk with the Lord; I needed to feel His answers- for He does answer...when we pray. I thought of you too, my friend; and told God...how I felt; I knew He would understand- although, I am not eloquent. My Lord takes these heartfelt feelings- sometimes, accompanied with tears, and uses His answers, when needed- by those for whom my heart pleads for. If you should feel His gentle hug- Loving you un-expectedly today, that may have been His answer- to that prayer...my heart sent His way! Submitted and Written by Carol E. Mott
Re: [TMIC] Jude is back in the hospital
Ella, thank you for the update. You are so kind, caring and a blessing. My thoughts, prayers and love go out to Jude ... he is so kind, loving and comforting. She gives me strength as does the rest of our TM family. Jude, May God Bless you and keep you in the palm of his hands. Thank you Ella for sending this on to Jude. Catherine From: alle...@aol.com alle...@aol.com To: tmic-list@eskimo.com . Sent: Friday, March 13, 2009 1:32:07 PM Subject: Re: [TMIC] Jude is back in the hospital I did and she thanks you ..Ella In a message dated 3/13/2009 8:45:15 A.M. Eastern Daylight Time, jillybean60...@yahoo.com writes: When you talk to her please tell her I said Hi and that I will be praying for her! Worried about job security? Check out the 5 safest jobs in a recession.
[TMIC] Friday funnies from doctors
1. A man comes into the ER and yells, My wife's going to have her baby in the cab! I grabbed my stuff, rushed out to the cab, Lifted the lady's dress, and began to take off her underwear. Suddenly I noticed that there were several cabs ---and I was in the wrong one. Submitted by Dr. Mark MacDonald,San Francisco 2. At the beginning of my shift I placed a stethoscope on an elderly and slightly deaf female patient's anterior chest wall. Big breaths, I instructed. Yes, they used to be, replied the patient. Submitted by Dr. Richard Byrnes, Seattle , WA 3. One day I had to be the bearer of bad news when I told a Wife that her husband had died of a massive myocardial infarct. Not more than five minutes later, I heard her reporting to the rest of the family that he had died of a massive internal fart. Submitted by Dr. Susan Steinberg 4. During a patient's two week follow-up appointment with his cardiologist, he informed me, his doctor, that he was having trouble with one of his medications. Which one? I asked. The patch, the Nurse told me to put on a new one every six hours and now I'm running out of places to put it! I had him quickly undress and discovered what I hoped I wouldn't see. Yes, the man had over fifty patches on his body! The instructions now include removal of the old patch before applying a new one. Submitted by Dr. Rebecca St. Clair,Norfolk , VA 5. While acquainting myself with a new elderly patient, I asked, How long have you been bedridden? After a look of complete confusion she answeredWhy, not for about twenty years - when my husband was alive. Submitted by Dr. Steven Swanson- Corvallis , OR 6. I was performing rounds at the hospital one morning and while checking up on a woman I asked, So how's your breakfast this morning? It's very good, except for the Kentucky Jelly. I can't seem to get used to the taste the patient replied. I then asked to see the jelly and the woman produced a foil packet labeled KY Jelly. Submitted by Dr. Leonard Kransdorf,Detroit, MI 7. A nurse was on duty in the Emergency Room when a young woman with purple hair styled into a punk rocker Mohawk, sporting a variety of tattoos, and wearing strange clothing, entered. It was quickly determined that the patient had acute appendicitis, so she was scheduled for immediate surgery. When she was completely disrobed on the operating table, the staff noticed that her pubic hair had been dyed green, and above it there was a tattoo that read, Keep off the grass. Once the surgery was completed, the surgeon wrote a short note on the patient's dressing, which said, Sorry, had to mow the lawn. Submitted by RN no name
Re: [TMIC] Mottos
This is Janice in Missouri. After reading this message, I couldn't pass up the phrase my husband uses with me. I tend to overdo and he is always after me to be careful - I fall periodically.Anyway, he says Don't be stupid, stupid!He is teasing me, but he is also warning me not to try something that could land me on the floor. - Original Message - From: jharpe...@aol.com To: tmic-list@eskimo.com Sent: Friday, March 13, 2009 12:13 PM Subject: [TMIC] Mottos Trudy said in the How to Dance in the Rain thread, When I was first injured someone I had never met sent me a book called You Gotta Keep Dancin by Tim Hansel That's my motto! I fall down, I get up and I keep on dancing!!! For some reason that brought to mind something that's often said at our house. I still have balance issues, so sometimes I'll be swaying almost too far over, and my oldest son will say, Stay upright! And I'll say, That's one of my goals in life! I thought it would be fun to share -- anyone else have any mottos or regular sayings around your house? Barbara H. http://barbarah.wordpress.com/ -- A Good Credit Score is 700 or Above. See yours in just 2 easy steps!
[TMIC] When God
When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen. Either He'll catch you when you fall, or He'll teach you how to fly! 'The power of one sentence! God is going to shift things around for you today and let things work in your favor. If you believe, send it. If you don't believe, delete it. God closes doors no man can open God opens doors no man can close PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR WHAT YOU SAID IN YOUR LIFE, ~BUT~THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL
Re: [TMIC] Implantable pumps
I have told a couple of people, but I am going to tell anyone interested in what I use for nerve pain. I have a spinal cord stimulator implanted in my back by my Pain Management doctor. There is a needle-like thing put in the spine with leaders coming off of it. They are attached to a generator lower on my back (very small incision). I then use a magnet to turn the sensations on and off according to pain level, etc. It covers the pain before it can reach my brain telling me that I have pain. So, drugs are never used. This is expensive, but insurance covers a lot of it. This is definitely not the pump that some of you are talking about. As for spasms, which used to really keep me awake at nite, I take Neurontin and Baclofen at different times in the evening. That has taken care of that problem. Just thought I'd through this into the discussion. If any questions, let me know. Janice - Original Message - From: lynne myers To: tmic Sent: Friday, March 13, 2009 8:08 AM Subject: RE: [TMIC] Implantable pumps I have had my baclofen pump for about a year and a half now. I dont think it works any better at controling the spasms than the oral baclofen does, but I dont have the brain fog as bad as I did when taking the pills. The main problem I have with the pump is the cost. My insurance covers 80% of cost so every time I have to go in for a refill (every three months) it costs me about $350. Plus I have to drive about 150 miles round trip to have it filled and / or adjusted. The level I am at right now is not as effective as I would like, but when we tried turning it up I was unable to empty out my bladder so had to go back down. As far as infections have had no problems there. But the surgery itself was miserable. Between the almost 6 incision in the front where the actual pump is and the 3 incision on back where the catheter was inserted into spine I was in alot of pain for the first week. It is also very difficult to find cloths that dont cling to the pump and make it stand out like a sore thumb. The pump has to be replaced every 5 years, and when that time comes I don't think I will have another one put in, will just have them take this one out. Lynne -- From: gor...@earthlink.net [mailto:gor...@earthlink.net] Sent: Thursday, March 12, 2009 12:49 PM To: tmic-list@eskimo.com Subject: [TMIC] Implantable pumps I want to get some feedback on the implantable pump (intrathecal) that provides meds directly into the spine. Any problems with infection? Cost on Medicare - 80/20 or 100% ? Convenient to have, or a pain with upkeep, maintenance, whatever problems you may have had? Did it work (regardless of the med, but it would be nice to know)? I am looking at pain relief, and probably anti-spasmodic being delivered via this device. Thanks for your input. mt
