Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Pat... I send you my sympathy and also empathize with you. I had a very similar experience when I lost my mother in 1986. You will always miss her but then come to realize that she is in a better place and just cherixh the memories and never forget what she taught you and what you shared together. Anger is one of the steps we must go through before we reach the acceptance of death.. You have PLS to aim it at so give it all you got!!! It will pass and then you can get back to more positive thinking... All those tears you shed are saved in a bottle in a real special place so keep them flowing for a while and that too will pass. ...My prayers are with you...God bless you Jeanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 > I try to be positive & work very hard at it. I realize that even > though I have this yukey disease I have much to be thankful for!! > Some times I get angry & very sad. >>> Hi Pat, you've been in my thoughts so much lately, knowing all that you've been going through. I know all too well how the stress, grief, and the anger makes your PLS worse and adds to the emotional burden you're already carrying. It must be an incredible loss when you lose not only a Mom, but also a Mom who has been your " friend " ....even though both of my parents have been gone for quite sometime, I have no idea what it's like to lose one who was a friend...or even a good parent for that matter. both of my parents were abusive to all three of us kids and I was the only one to still stay by my mom's side when she died. I didn't feel the loss of a friend or even the loss of a Mom, but I keenly felt the loss of " what-could-have-been " . so, when i hear of someone losing a parent that they were close to, I imagine the grief and realize that i can never truly know it or feel it, but I do feel the grief for the one left behind. so i guess this is a very long way of saying that i hope you take comfort in knowing what you meant to each other and that those feelings and memories will never be lost. take gentle care of yourself and try not to let all of this affect your PLS too badly. big hugs to you, maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 i think you and i are the only descendings on the list mine started with slurred speech and has progressed to no speech and very little walking i am now waiting for my power chair i think i have progressive descending Positive Attitude > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 In my research on PLS I have found a couple of things about " us " . Of the 5-600 diagnosed cases of PLS in the US only about 20% are descending, most start in the throat. Of this 20% about 80% have the very aggressive form of PLS. So I always tell my doctors that they are very lucky to have me in their office, do they know I'm only one of about 80 people in the country with this!!! ;-). I use humor for everything, I figure you can cry or laugh about it, I prefer to laugh (ok, sometimes it maybe forced ;-). The only difference is mine started in the left shoulder/arm, worked it's way down to take out most of my left side then marched across to my right side and started noticing problems with swallowing. Finally the last thing has been problems with my speech, I have to concentrate on talking so it is fatiguing also... Finally do you have extreme fatigue like me? If so ask your neur. about going on Provigal. I find the more tired I am, the worse all my symptoms are. hang in there, dale Re: Positive Attitude > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Dale, I agree wholeheartedly about having a positive attitude and being able to laugh at yourself. I certainly don't take myself very serioulsy and never have, except when it is very important. Even then, I can look back and see the humor revolving around the situation. Now, I sit here after falling at work Thursday evening at 5:58 pm. The time had to be documented and I was just getting ready to take my 6:00 pm meds. I turned from the computer and walked toward the sink so I could get some water. Next thing I knew I was on the floor with blood coming out of a gash in the back of my head. My left hip also hurt: That is the one that was replaced. Now, when I fall because of PLS, I can still laugh afterward, but this one was related to PLS only in the fact that I could not move one foot forward to stop myself nor could I put out my arms to keep myself from hitting the corner of the cabinet in the Nursing Office. I actually tripped over a rise in the vinyl flooring in that office. There are several that I know about and I avoid them. This is a new one. I am still able to laugh however. One of my group members came up while I was still on the floor bleeding and asked if I was still going to hold the group. Duh! The doctor was notified when it happened and it took it 40 minutes to come over and look at me. (He was doing his rounds.) The Main Office had told him a patient had fallen and injured himself. The nurse, who was holding a cloth against my head to slow/stop the bleeding, called again and told him I was a staff member. Of course, he was on the worst behavioral problem ward at the time and said he would be there in a few minutes. Now, I was going into shock, breaking into a cold sweat. My color had drained and I was completely pale. He came into the office, looked at me from the door and asked if I hurt enough to go to the hospital. The nurse and attendant who were taking care of me, looked at each other and both told him to make that decision after he had examined me. At that time I couldn't really say anything coherent, but the same thought was running through my head that they were having. If I was in shock, which was obvious, yes, I did have to go to ER. After he left, having filled out papers for me to go to ER, I was able to talk. The nurse, attendant and I began laughing about what had just happened with the doctor. None of us were charitable. The attendant said she was afraid that I was getting hysterical on her because I had started laughing while I was lying there. The patient's question about still having group got me started and brought up other memories of unbelieveable questions I have been asked out there. I wasn't getting hysterical, just laughing at the memories and also the sight of myself lying on the floor with blood running through my fingers (I put my hand back on the spot that had hit the cabinet.) Patients and staff both ran and got towels and wet washcloths for me. Just before they tried to put up on a chair, I began to go into shock and had a wet cloth put on my forehead. I got several X-rays of my hip, pelvis, and shoulder and 7 stitches in my head. Friday morning I was barely able to walk around and sleep came rather easily. That really helped. Now my left side is very sore and parts of my right side, especially my neck, are also sore. I never did get the headache I was expecting. My memory may be bad, but I don't remember hurting this much from falls I have taken that were directly PLS linked. Maybe my body had just healed. Back to the point: Throughout all this I maintained a positive attitude and knew that everything will be alright. It may be several days, but I will be fine. I really wish the " video cameras that record everything done at the hosptal " that several of my patient believe do exist actually did so I could see the whole thing over again. Tripping over a 3 inch hump in the flooring -- Yeah! That is an experience. I thought I probably looked silly to everyone, but the person who drove me to the hospital told me that he had tripped over some of the other " humps " in the flooring and he thought it was getting dangerous. Now he tells me! We had a few laughs during the 10 minute ride about the things the hospital believes is important and the things they don't seem to care about, but that would take too long to explain and this had gone on enough. I am still sore and have a doctor's appointment Monday morning. They called me before I had a chance to call them. Wonder if knowing the doctor personally has anything to do with this? Hope your day is much better and everyone who took the time to read this has a great day, also. Mike Gray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 That was a bad one, like when I wrote before, you have the falls, the majority it seems at least for me thank heavens, that are the laughable ones, no hurts (not talking pride here). But then you have ones like yours, serious and face it Mike, if you hadn't had PLS you probably would have stumbled a little, looked at what you caught your foot on and gotten your drink. But even in those, like you, I joke about them, it's the only way I can cope! Sounds like I should get you and my wife together to discuss concussions! You didn't have any doggie poop to get rid of did you??? Hope all is better soon, dale Positive Attitude > Dale, > > I agree wholeheartedly about having a positive attitude and being able > to laugh at yourself. I certainly don't take myself very serioulsy and > never have, except when it is very important. Even then, I can look back > and see the humor revolving around the situation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Dale, No doggie poop, but a lot of other poop to deal with :-X . I don't believe I got a concussion out of this. Asked about it, and was given a sheet of paper telling my wife what to look for. None of it has happened so far. Thank God for that! Mike dale wrote: >That was a bad one, like when I wrote before, you have the falls, the >majority it seems at least for me thank heavens, that are the laughable >ones, no hurts (not talking pride here). But then you have ones like yours, >serious and face it Mike, if you hadn't had PLS you probably would have >stumbled a little, looked at what you caught your foot on and gotten your >drink. But even in those, like you, I joke about them, it's the only way I >can cope! > >Sounds like I should get you and my wife together to discuss concussions! >You didn't have any doggie poop to get rid of did you??? > >Hope all is better soon, >dale > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Wow Mike, Sounds like you had a pretty bad day. I hope you are feeling better. It does a person good to have a good attitude about things, rather than getting upset. Good for you. I too had an experience with hitting my head. I had one of those bad nights where my legs were in knots. I got up to do some streches and not wake my hubby. I got to my chair to start streching and felt really light headed, I tried to get to the front of my chair to sit down. The next thing was me waking up on the floor with my head on the bricks where our wood stove is. I put my hand to my head and it was full of blood. I went to my bedroom door and told my hubby I needed help. The poor guy he felt so bad that he didnt wake up when I fell. I just laughed at the ordeal, he couldnt under stand that. I told him its better to laugh than sit there and cry about it. Sandy Quote Link to comment Share on other sites More sharing options...
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