Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 I have been meaning to write for a while but it takes a lot of energy but had several things that I wanted to write so here goes. First, Monday was the two-year anniversary of the real start of this journey, my left side just went away and then fell on my face. Part of me is amazed that it's been two years, and the other part goes, only two years, it seems like a lifetime. What a strange trip it has been. Wednesday they lowered my baclofen a little more and I am telling the difference. The brain fog and the exhaustion are starting to lessen. I'm at least as good as I was in June, unfortunately the stiffness has stayed and so I am pretty glued to my wheelchair. The doctor says I may never get back to even as good as I was in June but if I can get rid of the brain fog it is still worth it. I also let my last PT sessions, I have maxed out to my insurance so I must be cured! It made me realize how screwed I am in that the PT persons were getting very nice to me. There were telling me how sorry they were that I had to go through this, they're actually were getting nice to me. I asked the head PT person on what I could do about my painful hamstring. She paused to think and said " Dale, we have been talking about you and just don't know what to do. You don't react to the medications or exercises as you should, what works for you Monday may not work for you on Wednesday or even have a negative effect on you. If you had had a stroke, polio or injury we are fairly confident that we could say do this and it would work but not with you. We have discussed it and agree that you have the most screwed up nervous system we have ever seen. " I asked her if she could put that in to laymen's terms :-). On a good note I woke the first time in years with no brain fog and some energy! I immediately thought about what I would make for supper tonight and got out of bed and did a few things. I remembered this is the way I used to be, I even could talk almost normally with no effort. It only lasted about an hour but it was such a gift and I realize it is the brain fog that makes my life so miserable. I can take the physical parts but how do you fight brain fog? Finally, I have to smile at the talk about Provigal, I take 500 mg a day just to keep me awake and sometimes that it isn't enough! Okay, I'm poop, later. dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Dear Dale, I am glad that the brain fog is better. I hope and pray the worst is over for now. You and deserve a break and a vacation from all this!!! You are in my prayers. You are missed Dale,hang in there and feel better!!! N. Rumblings from Dale I have been meaning to write for a while but it takes a lot of energy but had several things that I wanted to write so here goes. First, Monday was the two-year anniversary of the real start of this journey, my left side just went away and then fell on my face. Part of me is amazed that it's been two years, and the other part goes, only two years, it seems like a lifetime. What a strange trip it has been. Wednesday they lowered my baclofen a little more and I am telling the difference. The brain fog and the exhaustion are starting to lessen. I'm at least as good as I was in June, unfortunately the stiffness has stayed and so I am pretty glued to my wheelchair. The doctor says I may never get back to even as good as I was in June but if I can get rid of the brain fog it is still worth it. I also let my last PT sessions, I have maxed out to my insurance so I must be cured! It made me realize how screwed I am in that the PT persons were getting very nice to me. There were telling me how sorry they were that I had to go through this, they're actually were getting nice to me. I asked the head PT person on what I could do about my painful hamstring. She paused to think and said " Dale, we have been talking about you and just don't know what to do. You don't react to the medications or exercises as you should, what works for you Monday may not work for you on Wednesday or even have a negative effect on you. If you had had a stroke, polio or injury we are fairly confident that we could say do this and it would work but not with you. We have discussed it and agree that you have the most screwed up nervous system we have ever seen. " I asked her if she could put that in to laymen's terms :-). On a good note I woke the first time in years with no brain fog and some energy! I immediately thought about what I would make for supper tonight and got out of bed and did a few things. I remembered this is the way I used to be, I even could talk almost normally with no effort. It only lasted about an hour but it was such a gift and I realize it is the brain fog that makes my life so miserable. I can take the physical parts but how do you fight brain fog? Finally, I have to smile at the talk about Provigal, I take 500 mg a day just to keep me awake and sometimes that it isn't enough! Okay, I'm poop, later. dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Hi Dale, As you say, this journey is a strange one and sometimes it seems it's the longest journey ever, true. But two things come to mind. We have each other on this journey, to encourage, to cry with, to laugh with, etc. Secondly, doctors, therapist, all medical personnel are only human, thank God for that because they do NOT have the last say. Meaning when they say that " it's over " , guess what?, that's not 100% truth. At best it's an estimated guess and that being the case we have hope that things may just turn around for the better. I choose to believe the one who has 100% truth, my Lord. If he decides you will live, that's 100% truth, you will. I will trust Him because He has the last word not man. So my friend, go to your doctor's as so will I, but trust in the word of God more than the word of man. Glad you are feeling better and here's to many more better days. Remember, " this too shall pass. " Take care and... God Bless Yolanda Rumblings from Dale I have been meaning to write for a while but it takes a lot of energy but had several things that I wanted to write so here goes. First, Monday was the two-year anniversary of the real start of this journey, my left side just went away and then fell on my face. Part of me is amazed that it's been two years, and the other part goes, only two years, it seems like a lifetime. What a strange trip it has been. Wednesday they lowered my baclofen a little more and I am telling the difference. The brain fog and the exhaustion are starting to lessen. I'm at least as good as I was in June, unfortunately the stiffness has stayed and so I am pretty glued to my wheelchair. The doctor says I may never get back to even as good as I was in June but if I can get rid of the brain fog it is still worth it. I also let my last PT sessions, I have maxed out to my insurance so I must be cured! It made me realize how screwed I am in that the PT persons were getting very nice to me. There were telling me how sorry they were that I had to go through this, they're actually were getting nice to me. I asked the head PT person on what I could do about my painful hamstring. She paused to think and said " Dale, we have been talking about you and just don't know what to do. You don't react to the medications or exercises as you should, what works for you Monday may not work for you on Wednesday or even have a negative effect on you. If you had had a stroke, polio or injury we are fairly confident that we could say do this and it would work but not with you. We have discussed it and agree that you have the most screwed up nervous system we have ever seen. " I asked her if she could put that in to laymen's terms :-). On a good note I woke the first time in years with no brain fog and some energy! I immediately thought about what I would make for supper tonight and got out of bed and did a few things. I remembered this is the way I used to be, I even could talk almost normally with no effort. It only lasted about an hour but it was such a gift and I realize it is the brain fog that makes my life so miserable. I can take the physical parts but how do you fight brain fog? Finally, I have to smile at the talk about Provigal, I take 500 mg a day just to keep me awake and sometimes that it isn't enough! Okay, I'm poop, later. dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Oh, I didn't mean I'm done, just meant that when PT people are nice to you ( one day they just said, Why don't you just lie down and we will heat wrap you) you know you not in a good spot... dale Rumblings from Dale > > > > I have been meaning to write for a while but it takes a lot of energy but > had several things that I wanted to write so here goes. > > First, Monday was the two-year anniversary of the real start of this > journey, my left side just went away and then fell on my face. Part of > me > is amazed that it's been two years, and the other part goes, only two > years, > it seems like a lifetime. What a strange trip it has been. > > Wednesday they lowered my baclofen a little more and I am telling the > difference. The brain fog and the exhaustion are starting to lessen. > I'm > at least as good as I was in June, unfortunately the stiffness has stayed > and so I am pretty glued to my wheelchair. The doctor says I may never > get > back to even as good as I was in June but if I can get rid of the brain > fog > it is still worth it. I also let my last PT sessions, I have maxed out > to > my insurance so I must be cured! It made me realize how screwed I am in > that the PT persons were getting very nice to me. There were telling me > how > sorry they were that I had to go through this, they're actually were > getting > nice to me. I asked the head PT person on what I could do about my > painful > hamstring. She paused to think and said " Dale, we have been talking > about > you and just don't know what to do. You don't react to the medications > or > exercises as you should, what works for you Monday may not work for you > on > Wednesday or even have a negative effect on you. If you had had a > stroke, > polio or injury we are fairly confident that we could say do this and it > would work but not with you. We have discussed it and agree that you > have > the most screwed up nervous system we have ever seen. " I asked her if > she > could put that in to laymen's terms :-). > > On a good note I woke the first time in years with no brain fog and some > energy! I immediately thought about what I would make for supper tonight > and got out of bed and did a few things. I remembered this is the way I > used to be, I even could talk almost normally with no effort. It only > lasted about an hour but it was such a gift and I realize it is the brain > fog that makes my life so miserable. I can take the physical parts but > how > do you fight brain fog? > > Finally, I have to smile at the talk about Provigal, I take 500 mg a day > just to keep me awake and sometimes that it isn't enough! > > Okay, I'm poop, later. > > dale > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 I hear what you're saying. I know. Take care. God Bless Yolanda Rumblings from Dale > > > > I have been meaning to write for a while but it takes a lot of energy but > had several things that I wanted to write so here goes. > > First, Monday was the two-year anniversary of the real start of this > journey, my left side just went away and then fell on my face. Part of > me > is amazed that it's been two years, and the other part goes, only two > years, > it seems like a lifetime. What a strange trip it has been. > > Wednesday they lowered my baclofen a little more and I am telling the > difference. The brain fog and the exhaustion are starting to lessen. > I'm > at least as good as I was in June, unfortunately the stiffness has stayed > and so I am pretty glued to my wheelchair. The doctor says I may never > get > back to even as good as I was in June but if I can get rid of the brain > fog > it is still worth it. I also let my last PT sessions, I have maxed out > to > my insurance so I must be cured! It made me realize how screwed I am in > that the PT persons were getting very nice to me. There were telling me > how > sorry they were that I had to go through this, they're actually were > getting > nice to me. I asked the head PT person on what I could do about my > painful > hamstring. She paused to think and said " Dale, we have been talking > about > you and just don't know what to do. You don't react to the medications > or > exercises as you should, what works for you Monday may not work for you > on > Wednesday or even have a negative effect on you. If you had had a > stroke, > polio or injury we are fairly confident that we could say do this and it > would work but not with you. We have discussed it and agree that you > have > the most screwed up nervous system we have ever seen. " I asked her if > she > could put that in to laymen's terms :-). > > On a good note I woke the first time in years with no brain fog and some > energy! I immediately thought about what I would make for supper tonight > and got out of bed and did a few things. I remembered this is the way I > used to be, I even could talk almost normally with no effort. It only > lasted about an hour but it was such a gift and I realize it is the brain > fog that makes my life so miserable. I can take the physical parts but > how > do you fight brain fog? > > Finally, I have to smile at the talk about Provigal, I take 500 mg a day > just to keep me awake and sometimes that it isn't enough! > > Okay, I'm poop, later. > > dale > > > > > > > Quote Link to comment Share on other sites More sharing options...
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