Re: [TMIC] OT Nursing Homes
*Kevin, * *I am aghast that they are still badgering you and your Mother about going into a nursing home. It makes me so angry. Kevin, you are lucid and in control of your faculties, and as long as you and your Mother are able to take care of your physical needs (Be it on your own, or with help.) they will have an extremely difficult time trying to force the two of you into a home. Please email me and let me know what's going on. It's been a long time since I've heard from you. * *Love, * *Grace* * *
Re: [TMIC] I'm fessing up - continued
Barbara, Soo glad that Daniel has come back so strong!! I think if one of us has a unhappy event, then all of us feel it. Terrible time for his schooling, but he survived and was allowed to make up his tests, etc. so that's a load off his back!! Anyway, thanks for the update. Prayers answered. Hugs, jan My heart is so warmed by all of your responses, too many to respond to individually. Many struggle with some of the same issues as I do of going good for a while and then slacking off. And, winter is of course the hardest time for us to think about exercise when we are more achy than usual. I have been thinking about this though, and I think that it is more important during the winter than ever, if that's possible. During the winter many of us have depression issues that are deeper than usual, due to having stronger or different aches and pains. The weather is also very depressing, and many suffer from SAD. When we exercise we are doing something positive for ourselves and often the aches and pains are reduced at least a bit by moving, if we are careful not to overdo it. So, come on everyone, join in... We've got a good group of us that have chosen to try to get our exercise programs going again. We're all here for support, isn't that what this group is for??? Big hugs to all, Barbara A in Auburn CA
Re: [TMIC] sympom check question
Linda, Isn't it amazing that a matter as simple as emptying your bladder can go haywire..we are so unaware of the functions of our bodiesthat we do automatically, until we can't do them! What a learning curve tm has given us!Glad for you that you have some returning feeling/ability to go on your own. I remember how frustrated I was during the time I had to self cath, no feeling and no way to tell where the catheter should go..Looking back, I have so many stories to tell that today are really! funny .but, definitely weren't then!!! I guess I should tell that I was a complete to the t8, paralyzed from breast level down...with pt and no knowledge that I might not get back my ability to walk, etc, I was walking within 4 months with a walker. Today with residuals that others can't see, (except in this bitter cold,) I'm one of the walking wounded. Hugs, janh Stillwater, OK A lot of us have bladder issues with TM. When TM hit me, it took me a full day and a half to realizethat I hadn't gone. I just didn't have any feeling. So I put myself on a "potty" schedule. My doc sent me to a Urologist in Seattle who was very familiar with TM. I had the neurogenic bladder test (not that pleasant), but really glad I had it. I was told that my bladder was not emptying completely - in fact, hardly at all, but since I couldn't feel it, how would I know. So I was taught to self-cath. I have done this for almost 8 years now. However, by some miracle, in the last year I have gotten some feeling back and find I only have to cath maybe twice a day. The rest of the time I can just go on my own. I know it is said for the most part after 2 years whatever we're left with is what it is. But I really have not found that to be completely true. Many areas of my body have improved, a wonderful surprise, and then some things have pretty much been the same. It sounds like you may not have all your feeling back yet. And read any of the posts on the Message Forum - the bladder is usually the slowest to come back. But never give up. It sounds like your bladder may be doing a variety of things?? Did you have any tests when you saw the urologist? Are you on bladder meds? Ok - got some questions for you to answerThis is great - it's how we can help each other. Linda
Re: [TMIC] I'm fessing up
Hi Rob, This reminds me of how much I miss being in the water. We do not have an indoor pool in our area, so I need to find one in a nearby area to get some water exercise in on a regular basis. You are so right about feeling so good about the movement we can get in water that we cannot get on land. I was never able to swim, just never learned. Actually, I never liked my face in the water, and until a few years ago, I totally avoided it. I was splashed in the face a good deal as a kid and hated it so much. I now will put my face in the water and I make my version of attempting to swim. I am a lousy kicker, but I give it the effort. My legs get tired so fast though. I have always been a great floater, lol. Hugs, Barbara A in Auburn CA -Original Message- From: Robert Pall rp...@neillsupply.com To: Barbara Alma balmat...@aol.com; tmic-l...@eskimo.net Sent: Mon, Jan 11, 2010 5:03 am Subject: RE: [TMIC] I'm fessing up As per Dr. Kerr's advice I have been swimming 3-4 times per week for about an hour each time. I have been doing this for about six month after basically stopping exercise for a couple of years. I am amazed at how much better I am feeling since I began this regimen. I have more energy, feel stronger, and have lost nearly 20 lbs. I was foolish to stop exercising believing it was doing nothing for my TM symptoms. The fact that I am in better shape and lighter have definitlty helped my TM symptoms and probably more important the cardio workout is helping my general health overall. Finally it is a wonderful feeling to be able to do things in water that we find impossible to do on land (such as running). I have found the underwater MP3 player I use and listen to all my doo-wop has made the workouts feel easier and more fun. Anyone interested in such a device let me know and i will advise where it can be purchased. All the best! Rob in Frigid New Jersey From: Barbara Alma [mailto:balmat...@aol.com] Sent: Friday, January 08, 2010 6:21 PM To: tmic-l...@eskimo.net Subject: [TMIC] I'm fessing up Ok guys - here I go again. I've laxed off again on my exercises. Seems that I do this so often, and I know that I am not the only one and that is why I am making this confession public. Maybe this will help me to stay focused for a while at least, knowing that other eyes are on me, lol. And, maybe it'll get some of you moving it again. I have been sick since the last week of October, with various bouts of a bug, what appeared to be some allergies, a cold or two, the flu 2x and now just getting over a mild case of pneumonia. I think the last of which was just a breakdown of my body over the stress of our son Daniel being so sick. So, I did not had more than about 8 days of well days if I am lucky since then. During this time I missed a 1st birthday party for my first great niece, a wedding, and a weeks vacation in San Diego. Happily I had 2 well days at Christmas. Sick the day after, lol. I started riding my recumbent bike the other day and already I feel some strength coming back, and believe me, I have gotten weaker over this time. So, if any of you, and I know that there have got to be more than a few of you, have also been getting lax on your exercises, please get back into the swing of things again. Our bodies need it, and it is such a boost to see even a slight improvement. If nothing else, we need to keep moving and you'll feel like you are doing something good for yourself. I picked my bike up for $50 on Craigslist.com last year. If any of you live in an area that has a Craigslist city listed anywhere near you, you'd be so surprised on what you can buy there. Tons of exercise and mobility stuff. Take care and here's to a healthier and stronger 2010. Hugs, Barbara A in Auburn CA
Re: [TMIC] sympom check question
Patti, We are pretty similar in bladder and leg feeling.I use a 4-prong cane and probably always will, but I have gone from paralyzed to walking. Can't complain, but sometimes my mind goes on overdrive and I sure wish for the old days. But, at least, we all have each other. It was really rough going before I found you guys. Janice From: Patricia Cooley Sent: Sunday, January 10, 2010 11:38 AM To: 'Alton Ryder' ; 'L T CHERPESKI' Cc: 'randy rankin' ; 'Janice Nichols' ; 'tmic list' Subject: RE: [TMIC] sympom check question According to my neurologist, mine is at T-10. At first, my legs were useless. After about 2-3 days they got me up and sort of walking. After 4 weeks in P.T., I was doing pretty good in a walker so they discharged me. I went for P.T. for about 5 months and improved so very much. They were trying to get me to use a cane, which scared me to death since I have a problem with my balance. I am sure I almost broke bones in my therapist's hands while she was helping me. I also have bladder and bowel problems. I don't have the feeling when I have to urinate, but put myself on a potty schedule which works pretty well. I have noticed that when my bladder has become full, and I haven't gone for a while, I get a sensation that I have come to recognize as a need to go. I take acidophilus once a day and that helps keep me regular. My good leg is my left one. I don't have any feeling in parts of my feet (toes and top of my feet) so I have to be careful if I walk without shoes. My legs feel as they I have a bag of cement in my calves, but I do have some feeling in the skin. I went back to work part time a year ago, and since then I have been able to walk in the house without a walker or cane. Never thought I would ever get to that point. The worse thing is the neuropathy in my feet. They feel so cold they burn. All in all, I feel pretty lucky or I should say blessed that it isn't worse or that my pain so far is manageable. I hope this helps others who were affect in the T-spine. Patti - Wisconsin From: Alton Ryder [mailto:a-ry...@comcast.net] Sent: Sunday, January 10, 2010 8:48 AM To: L T CHERPESKI Cc: randy rankin; Janice Nichols; tmic list Subject: Re: [TMIC] sympom check question My damage was at T9-T10. All symptoms were below, none above. Bowels recovered immediately. Bladder also then it failed; I've had a Foley indwelling catheter for years Left leg control and sensation have recovered completely. Right leg sensations below mid-calf are, after a decade, still screwed up. Right foot/ankle spasticity was so severely and apparently permanently out of control that surgery was required to restore utility by cutting all tendons and using a foot/ankle brace. Alton On Jan 9, 2010, at 10:54 PM, L T CHERPESKI wrote: ask those who were hit in the T-spine
Re: [TMIC] sympom check question
I think you have to unsubscribe yourself, we can't do it for you. -- From: M Davis mdavis...@cox.net Sent: Sunday, January 10, 2010 10:25 PM To: pjv1...@chartermi.net; randy rankin rj_ran...@yahoo.com; Barbara H. barbara...@gmail.com; Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] sympom check question please take my name off your list. unsubscribe me, PLEASE - Original Message - From: pjv1...@chartermi.net To: randy rankin rj_ran...@yahoo.com; Barbara H. barbara...@gmail.com; Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Sent: Saturday, January 09, 2010 12:20 PM Subject: Re: [TMIC] sympom check question Janice Nichols jan...@centurytel.net wrote: How high up did you all get hit by TM? Give me the part of the body, not the #.Thanks, Janice From: Barbara H. Sent: Saturday, January 09, 2010 10:40 AM To: randy rankin Cc: tmic-list@eskimo.com Subject: Re: [TMIC] sympom check question Yes, I have experienced electric shock symptoms in different places. It was most disturbing on the back of my head -- I really thought something was going wrong inside. But it was just a nerve in the muscles misfiring and setting off that jolt. Barbara H. http://barbarah.wordpress.com On Fri, Jan 8, 2010 at 3:39 PM, randy rankin rj_ran...@yahoo.com wrote: I would like to know if any of you have had the following symptom(s) I try to read everything people write and this might have already been addressed Yesterday, I had a power electric shock to my entire right arm to the tip of my fingers. It wasn't a moving sensation. The entire arm just felt like I just grabed an electric wire. The only motion that I made before it happened was to raise my RIGHT arm up to write on a board. I think I raised my head upwards to look at the board. less than two hours later the same even happened to my RIGHT arm except I looked down, from a seated position, and reach to get my cell phone. The second that I touched the phone and just started to curl my fingers around it a more powerful electrical shock hit my entire right arm. It hurt and frightened me. Has anyone exprienced this? The back of my neck has been hurting. It does NOT hurt to move my neck except to look down. I can't stand that.
Re: [TMIC] sympom check question
I need to join in on this conversation. Linda, I am where you are at with cathing twice a day, morning and night, and pretty well empting out during the day. You really give me hope that I will do even better. I started out cathing 4 times a day and then setting the alarm at nite to get up every few hours to go again. So I have graduated somewhat.I don't set the alarm anymore, but sometimes my bladder doesn't seem to need me to be awake to do it's thing.Always wear protection! I go in a couple of weeks for my 3-year urology checkup. I could tell you a few good stories to on learning to cath! Janice From: Jan Hargrove Sent: Monday, January 11, 2010 10:58 AM To: L T CHERPESKI ; Gary Thomas ; pjv1...@chartermi.net ; randy rankin ; Barbara H. ; Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] sympom check question Linda, Isn't it amazing that a matter as simple as emptying your bladder can go haywire..we are so unaware of the functions of our bodies that we do automatically, until we can't do them! What a learning curve tm has given us! Glad for you that you have some returning feeling/ability to go on your own. I remember how frustrated I was during the time I had to self cath, no feeling and no way to tell where the catheter should go.. Looking back, I have so many stories to tell that today are really! funny .but, definitely weren't then!!! I guess I should tell that I was a complete to the t8, paralyzed from breast level down...with pt and no knowledge that I might not get back my ability to walk, etc, I was walking within 4 months with a walker. Today with residuals that others can't see, (except in this bitter cold,) I'm one of the walking wounded. Hugs, janh Stillwater, OK A lot of us have bladder issues with TM. When TM hit me, it took me a full day and a half to realize that I hadn't gone. I just didn't have any feeling. So I put myself on a potty schedule. My doc sent me to a Urologist in Seattle who was very familiar with TM. I had the neurogenic bladder test (not that pleasant), but really glad I had it. I was told that my bladder was not emptying completely - in fact, hardly at all, but since I couldn't feel it, how would I know. So I was taught to self-cath. I have done this for almost 8 years now. However, by some miracle, in the last year I have gotten some feeling back and find I only have to cath maybe twice a day. The rest of the time I can just go on my own. I know it is said for the most part after 2 years whatever we're left with is what it is. But I really have not found that to be completely true. Many areas of my body have improved, a wonderful surprise, and then some things have pretty much been the same. It sounds like you may not have all your feeling back yet. And read any of the posts on the Message Forum - the bladder is usually the slowest to come back. But never give up. It sounds like your bladder may be doing a variety of things?? Did you have any tests when you saw the urologist? Are you on bladder meds? Ok - got some questions for you to answer This is great - it's how we can help each other. Linda Emoticon1.gif
Re: [TMIC] sympom check question
Well, first of all I am really amazed by your progress Jan, and so very happy for you. I've got some pretty funny stories about learning to cath that were NOT funny at the time. At the time, I thought boy you've really sunk to the lowest point now! Then it didn't take too long to realize that all of that stuff was old hat to these gals. They dealt with it every day. I actually told the learning to cath story to my mom and sisters - oh my gosh, we all laughed so hard we had to mop the tears off our faces. Janice, you definitely have improved if you're down to cathing twice a day. That is really great to hear. Cathing had just become a new normal part of my life. And then in the last year something just changed - and this is after 7 years of not feeling anything. There is always room for hope. That goes for all of us, whatever our challenges are. Be sure to ask your urologist a lot of questions and let him know exactly what your bladder had been and how it is now. These urologists have a lot of info up their sleeves. I'm looking forward to hearing what he has to say. Oh by the way, I can remember at night dreaming that I was wetting the bed. The next thing I knew I was sitting up in bed, startled - not realizing why until the very last second - if you get my drift. But that doesn't happen anymore, and that's what I'm hoping for you. That it just gets better over time. It's really quite amazing to think back to the beginning and see how far we've come. I know some days don't feel that way - I've had many and I'm sure most of us have. I know one thing for sure, I wouldn't want to go through the horrible shock of what happened in the beginning. For sure it's a day that none of us will ever forget. Linda - Original Message - From: Janice Nicholsmailto:jan...@centurytel.net To: Jan Hargrovemailto:jmh1...@sbcglobal.net ; L T CHERPESKImailto:cherp...@msn.com ; Gary Thomasmailto:gbthomas8...@sbcglobal.net ; pjv1...@chartermi.netmailto:pjv1...@chartermi.net ; randy rankinmailto:rj_ran...@yahoo.com ; Barbara H.mailto:barbara...@gmail.com Cc: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Monday, January 11, 2010 8:24 PM Subject: Re: [TMIC] sympom check question I need to join in on this conversation. Linda, I am where you are at with cathing twice a day, morning and night, and pretty well empting out during the day. You really give me hope that I will do even better. I started out cathing 4 times a day and then setting the alarm at nite to get up every few hours to go again.So I have graduated somewhat.I don't set the alarm anymore, but sometimes my bladder doesn't seem to need me to be awake to do it's thing.Always wear protection! I go in a couple of weeks for my 3-year urology checkup. I could tell you a few good stories to on learning to cath! Janice From: Jan Hargrovemailto:jmh1...@sbcglobal.net Sent: Monday, January 11, 2010 10:58 AM To: L T CHERPESKImailto:cherp...@msn.com ; Gary Thomasmailto:gbthomas8...@sbcglobal.net ; pjv1...@chartermi.netmailto:pjv1...@chartermi.net ; randy rankinmailto:rj_ran...@yahoo.com ; Barbara H.mailto:barbara...@gmail.com ; Janice Nicholsmailto:jan...@centurytel.net Cc: tmic-list@eskimo.commailto:tmic-list@eskimo.com Subject: Re: [TMIC] sympom check question Linda, Isn't it amazing that a matter as simple as emptying your bladder can go haywire..we are so unaware of the functions of our bodies that we do automatically, until we can't do them! What a learning curve tm has given us! Glad for you that you have some returning feeling/ability to go on your own. I remember how frustrated I was during the time I had to self cath, no feeling and no way to tell where the catheter should go.. Looking back, I have so many stories to tell that today are really! funny .but, definitely weren't then!!! I guess I should tell that I was a complete to the t8, paralyzed from breast level down...with pt and no knowledge that I might not get back my ability to walk, etc, I was walking within 4 months with a walker. Today with residuals that others can't see, (except in this bitter cold,) I'm one of the walking wounded. Hugs, janh Stillwater, OK -- A lot of us have bladder issues with TM. When TM hit me, it took me a full day and a half to realize that I hadn't gone. I just didn't have any feeling. So I put myself on a potty schedule. My doc sent me to a Urologist in Seattle who was very familiar with TM. I had the neurogenic bladder test (not that pleasant), but really glad I had it. I was told that my bladder was not emptying completely - in fact, hardly at all, but since I couldn't feel it, how would I know. So I was taught to self-cath. I have done this for almost 8 years now.
