Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Hello , I have read your post and those of Rita and JoJo. I just had to respond to you and tell you that I know just how you are as I live with one that is much the same he to still works full time. Seems to be all that he can do but gives him a reason to get up and go in the morning. And I also know how important it is to provide for his family. But I know that at times it must be so hard for him. So with that said I must say that for you and him I have the greatest of respect. I think if I was the one with the PLS how things would be so different. I would not be as strong as what he seems to be most of the time. I think I would just find me a corner and roll into a ball and cry like a baby. I guess that is why I did not get this monster of an illness as they say God only gives you what you can handle. And I really don't think I could handle this illness. As a caregiver I have a hard enough time dealing with it on a day to day basis. I know would not be a pretty sight if it was me and not him. Will I think I am just rambling now but I did want to tell you Alan that you have my respect? Keep up with the post I love to hear from everyone. You are all so strong and kind. Gives me hope. Will enough said this time you take care Alan and hang in there we are all rooting for you. Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Thanks Rita, My prays go out to you and hang in there it will get better. and I have just went through much the same with the van thing. But we did find ours. Was not an easy task so hang in there and keep trying. Hugs and love to you and . Yes I also married a . Shirley (michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Hi Alan: My name is Jo and I have just read your note to Rita. You may feel depressed but I would say you are not a quitter with your stretching, exercising and still going to work. Don't think you are giving yourself enough credit. Keep on trucking and know that there are others out there who care about you. JoJo Still here > Hi Rita, > > I'm still around, just not online as often. I'm still working and it makes life a struggle. Hard to get in/out of bed, dressed, I used to love driving (not so easy anymore), ..... Very tired every night. You all know the story. But without work, I'd go crazy. > > Yes, I've been with a therapist (two actually) since forever it seems. I am taking this very hard and not handling it as well as others seem to. " It " continues to progress and it depresses me. I have a PHD in worrying. I'm scared of being the guy in the bed/chair who can't move or communicate. > > I do what I can. Stretch most every morning. Taking a water exercise class two days per week. Go to work. Work from home on occasion. Watch TV. Read my Bible. > > Rita I think of you and other PLSers I've met often. You are all my heroes. To go through this with a smile on your face is difficult. > > I'm going to the Dr. tomorrow for an " oil " change (refill the pump) and an increase in the dosage. Maybe they could put some gin in there too. Sell a lot more pumps that way. > > This sounds more depressing than I am (most times). > > Alan Kirk > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 JoJo: That was sweet of you to answer Alan in such a nice way. I have had the pleasure of meeting him in Vermont a few years ago, and yes he has a problem with depression and coping with PLS. But he is a lot stronger then he give's himself credit for. I have seen his physical decline, but yet he still keeps working and providing for his family. Alan my dear friend you will never know how much of a hero you are to me. I am sure that there are a lot of others who could not keep working and accomplishing what you do on a daily basis. God Bless! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Alan, One of the first universal rules of PLS: The closer your butt is to your heels, the harder it is to stand up! When people see my two canes and offer me their seat, I always say, " No. Thank you. When I sit down, I have to get back up. " Vaughn Pain is inevitable. Misery is optional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Alan: As I said, you don't give yourself enough credit for doing the things you do. I couldn't do half of what you do. After I had my couple of falls, my neurologist sent me to physical therapy (at my request). Forget it, I was miserable. My body hurt so bad, I would lay in bed at night and cry the pain from doing the PT was terrible. Thats one thing I have learned over these past 20 years, that we PLSers are all physically different and some can tolerate PT and I can't, it takes to much out of me. With me stress kicks in and it effects me physically. When we are diagnosed we have two choices, sit around and be miserable for the rest of our life, or make the best of a bad situation. Some of us can make that choice, others like you have a real problem with this stinking disease. Thats OK Alan you have to deal with having PLS your way and no words I or anybody else says will change what your feeling. You know I am always here for you (off line). Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Shirley, well said. and I had a rough time this AM. As most of you know by now I am going into a power chair and have been searching for a van that we can afford. Well it looks like it's not going to happen, as they are so expensive, and anything decent is out of our reach, and the ones we can afford are high mileage and in awful condition. Well you people who have met and I know how lucky I am to have such a wonderful caring husband, well he lost it today. We were at a dealership with all these beautiful mini-vans with the lifts and the whole nine yards, and there was not one we could afford, and he started to cry and told he felt like a failure because he could not provide this vehicle that I will need to be transported around. I have never ever seen this man so broken in our 41 years of marriage. I tried to tell him it doesn't matter what we drive in, and if I have to keep using my manual until we hit the lottery. I just thank God I still have him at 78 years of age, and this van which he is obsessed in getting, really doesn't matter. There I go rambling, but we all have our frustrations and highs and lows. But you know, if we all kept a journal I bet the good in our lives would out weigh the bad. Sorry to go on and on! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Alan, Anyone who can say, " Maybe they could put some gin in there too. Sell a lot more pumps that way. " can't be all that depressed. I would prefer scotch, though. Mike Gray Alan Kirk wrote: > Hi Rita, > > I'm still around, just not online as often. I'm still working and it > makes life a struggle. Hard to get in/out of bed, dressed, I used to > love driving (not so easy anymore), ..... Very tired every night. You > all know the story. But without work, I'd go crazy. > > Yes, I've been with a therapist (two actually) since forever it > seems. I am taking this very hard and not handling it as well as > others seem to. " It " continues to progress and it depresses me. I > have a PHD in worrying. I'm scared of being the guy in the bed/chair > who can't move or communicate. > > I do what I can. Stretch most every morning. Taking a water exercise > class two days per week. Go to work. Work from home on occasion. > Watch TV. Read my Bible. > > Rita I think of you and other PLSers I've met often. You are all my > heroes. To go through this with a smile on your face is difficult. > > I'm going to the Dr. tomorrow for an " oil " change (refill the pump) > and an increase in the dosage. Maybe they could put some gin in > there too. Sell a lot more pumps that way. > > This sounds more depressing than I am (most times). > > Alan Kirk > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Alan, Anyone who can say, " Maybe they could put some gin in there too. Sell a lot more pumps that way. " can't be all that depressed. I would prefer scotch, though. Mike Gray Alan Kirk wrote: > Hi Rita, > > I'm still around, just not online as often. I'm still working and it > makes life a struggle. Hard to get in/out of bed, dressed, I used to > love driving (not so easy anymore), ..... Very tired every night. You > all know the story. But without work, I'd go crazy. > > Yes, I've been with a therapist (two actually) since forever it > seems. I am taking this very hard and not handling it as well as > others seem to. " It " continues to progress and it depresses me. I > have a PHD in worrying. I'm scared of being the guy in the bed/chair > who can't move or communicate. > > I do what I can. Stretch most every morning. Taking a water exercise > class two days per week. Go to work. Work from home on occasion. > Watch TV. Read my Bible. > > Rita I think of you and other PLSers I've met often. You are all my > heroes. To go through this with a smile on your face is difficult. > > I'm going to the Dr. tomorrow for an " oil " change (refill the pump) > and an increase in the dosage. Maybe they could put some gin in > there too. Sell a lot more pumps that way. > > This sounds more depressing than I am (most times). > > Alan Kirk > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Alan, You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. I'm sick and tired of being sick and tired! I'd like to have one day that I didn't have to think about PLS. What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! SO THERE! Boy, I feel better now. Thanks for letting me get that off my chest. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Alan, You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. I'm sick and tired of being sick and tired! I'd like to have one day that I didn't have to think about PLS. What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! SO THERE! Boy, I feel better now. Thanks for letting me get that off my chest. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Alan, You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. I'm sick and tired of being sick and tired! I'd like to have one day that I didn't have to think about PLS. What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! SO THERE! Boy, I feel better now. Thanks for letting me get that off my chest. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Bless you . I want to make a difference too. The VA experience was great and I hope it will quickly usher in a cure. We have Shellie cheering us on ... and who has the nerve to stand up to that little fire ball? My prayers are with you, Donna > Alan, > You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . > My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Bless you . I want to make a difference too. The VA experience was great and I hope it will quickly usher in a cure. We have Shellie cheering us on ... and who has the nerve to stand up to that little fire ball? My prayers are with you, Donna > Alan, > You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . > My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Bless you . I want to make a difference too. The VA experience was great and I hope it will quickly usher in a cure. We have Shellie cheering us on ... and who has the nerve to stand up to that little fire ball? My prayers are with you, Donna > Alan, > You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . > My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 HI JENNIFER, I CERTAINLY CAN UNDER STAND HOW YOU FEEL. I BOUGHT A VIDEO CAMERA YEARS AGO TO DOCUMENT OUR GRANDSON'S LIFE. NOW WE HAVE A GRANDDAUGHTER TO DOCUMENT. DON IS NOW STARTING TO LOSE HIS VOICE. OUR GRANDSON WANT TO KNOW WHEN HIS PAPA IS GOING TO WALK AGAIN. OUR GRANDDAUGHTER WILL NEVER KNOW THAT HER PAPA COULD EVER WALK. AS FAR AS SHE IS CONCERNED HE IS THE VERY BEST STROLLER. SHE SITS IN HIS LAP WHEN WE GO AWAY. IT'S JUST TO MUCH TO HANDLE A WHEEL CHAIR A STROLLER AND TWO KIDS. ANY WAY BACK TO MY POINT. WITH DON HAVING ALS WE KNOW WHAT IS AHEAD. I AM GOING TO START TAPING DON'S STORIES THAT HE HAS SHARED WITH ME ALL THESE YEARS. HE HAD A VERY RICH LIFE AND MUCH DIFFERENT BEING RAISED ON AN ISLAND. I WANT SOMETHING FOR THE GRANDCHILDREN TO LOOK BACK ON AND KNOW THEIR GRANDPA. OUR SON ALSO JUST MARRIED LAST JUNE AND THEY HAVE A FEW GOALS TO MEET BEFORE THEY START A FAMILY. AND WHO KNOWS THESE CHILDREN MAY NEVER KNOW THEIR GRANDPA. VIDEO CAMERA'S ARE NOT NEARLY AS EXPENSIVE AS THEY USE TO BE. I SUGGEST WE ALL START TAPING AND MAKE IT POSITIVE. OUR CHILDREN WONDER IF THIS IS GOING TO THEIR FUTURE OR THE FUTURE OF THEIR CHILDREN. WE DON'T SHOW THEM ALL THE PROBLEMS. THEY SEE ENOUGH OF IT. LOVE TO YOU ALL AND I HOPE YOU CAN CONTINUE TO MAKE MEMORIES TO SHARE WITH YOUR FAMILIES. WE HAVE ALWAYS WORKED TO MAKE MEMORIES EVEN BEFORE DON BECAME ILL. IT IS A PART OF OUR LIFE. BONNIE OH Re: Still here > Alan, > You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . > My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 HI JENNIFER, I CERTAINLY CAN UNDER STAND HOW YOU FEEL. I BOUGHT A VIDEO CAMERA YEARS AGO TO DOCUMENT OUR GRANDSON'S LIFE. NOW WE HAVE A GRANDDAUGHTER TO DOCUMENT. DON IS NOW STARTING TO LOSE HIS VOICE. OUR GRANDSON WANT TO KNOW WHEN HIS PAPA IS GOING TO WALK AGAIN. OUR GRANDDAUGHTER WILL NEVER KNOW THAT HER PAPA COULD EVER WALK. AS FAR AS SHE IS CONCERNED HE IS THE VERY BEST STROLLER. SHE SITS IN HIS LAP WHEN WE GO AWAY. IT'S JUST TO MUCH TO HANDLE A WHEEL CHAIR A STROLLER AND TWO KIDS. ANY WAY BACK TO MY POINT. WITH DON HAVING ALS WE KNOW WHAT IS AHEAD. I AM GOING TO START TAPING DON'S STORIES THAT HE HAS SHARED WITH ME ALL THESE YEARS. HE HAD A VERY RICH LIFE AND MUCH DIFFERENT BEING RAISED ON AN ISLAND. I WANT SOMETHING FOR THE GRANDCHILDREN TO LOOK BACK ON AND KNOW THEIR GRANDPA. OUR SON ALSO JUST MARRIED LAST JUNE AND THEY HAVE A FEW GOALS TO MEET BEFORE THEY START A FAMILY. AND WHO KNOWS THESE CHILDREN MAY NEVER KNOW THEIR GRANDPA. VIDEO CAMERA'S ARE NOT NEARLY AS EXPENSIVE AS THEY USE TO BE. I SUGGEST WE ALL START TAPING AND MAKE IT POSITIVE. OUR CHILDREN WONDER IF THIS IS GOING TO THEIR FUTURE OR THE FUTURE OF THEIR CHILDREN. WE DON'T SHOW THEM ALL THE PROBLEMS. THEY SEE ENOUGH OF IT. LOVE TO YOU ALL AND I HOPE YOU CAN CONTINUE TO MAKE MEMORIES TO SHARE WITH YOUR FAMILIES. WE HAVE ALWAYS WORKED TO MAKE MEMORIES EVEN BEFORE DON BECAME ILL. IT IS A PART OF OUR LIFE. BONNIE OH Re: Still here > Alan, > You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . > My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 , Giving away your car and golf clubs must be painful. But, I wonder, just how much are you doing? Are you still trying to be superwoman? Your exhaustion after tutoring may be related to other things you are doing and you may have to relax and decide what is important to you personally. Choose what is and give up what really isn't. You have too much to share and I'd hate to see you give up things you enjoy. I, too, am sick and tired of being sick and tired. Imagine me with an 11 year old son who plays as many sports as he can and I'm not able to help him practice. I have two grandchildren and when the oldest stays for a weekend, I'm exhausted. Consider this when you have grandchildren. You may have to give other things up to have the energy to enjoy them. I certainly hope you have some soon! You are a lot younger than I and I wish you the best. By the way, I don't think about PLS every day. Well, not a lot. I am not going to let it control me that much. I only think about it when I'm having some problems that are noticeable to me. I guess I have a choice about how I'm going to feel and I choose to feel good about each day, no matter what the situation. I will be seeing my neurologist on Thursday, so I guess it's time to stiffen up and look bad. That happens when I see him. I think it's a fear factor: That I'm going to be told things are getting worse. But I don't really worry about it except when it is time to see him. Maybe it's just a guy thing - live in denial so you can live. I don't really know. Take care, good care, of yourself, Mike Gray Thomson wrote: > Alan, > You sound like I feel today. It seems as if I have more " down " days > that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good > friend, and now I'm trying to decide if I should give up tutoring at > our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move > or communicate " . > My son just got married last weekend. My other son is still single. I > want grandbabies and family gatherings and lots of good happy > memories. I'm afraid if they wait too long to have children, I won't > be able to be the grandmother I want to be. I'm afraid my unborn > grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening > (supposedly) we are supposed to be all happy go lucky and thrilled to > death to have this stupid disease. Would anyone expect a person with > MS to be thrilled upon hearing the diagnosis? Would anyone expect a > person with Parkinson's or MS to be happy with the fact that nobody > really cares to find a cure or treatment for their disease? Isn't our > disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 , Giving away your car and golf clubs must be painful. But, I wonder, just how much are you doing? Are you still trying to be superwoman? Your exhaustion after tutoring may be related to other things you are doing and you may have to relax and decide what is important to you personally. Choose what is and give up what really isn't. You have too much to share and I'd hate to see you give up things you enjoy. I, too, am sick and tired of being sick and tired. Imagine me with an 11 year old son who plays as many sports as he can and I'm not able to help him practice. I have two grandchildren and when the oldest stays for a weekend, I'm exhausted. Consider this when you have grandchildren. You may have to give other things up to have the energy to enjoy them. I certainly hope you have some soon! You are a lot younger than I and I wish you the best. By the way, I don't think about PLS every day. Well, not a lot. I am not going to let it control me that much. I only think about it when I'm having some problems that are noticeable to me. I guess I have a choice about how I'm going to feel and I choose to feel good about each day, no matter what the situation. I will be seeing my neurologist on Thursday, so I guess it's time to stiffen up and look bad. That happens when I see him. I think it's a fear factor: That I'm going to be told things are getting worse. But I don't really worry about it except when it is time to see him. Maybe it's just a guy thing - live in denial so you can live. I don't really know. Take care, good care, of yourself, Mike Gray Thomson wrote: > Alan, > You sound like I feel today. It seems as if I have more " down " days > that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good > friend, and now I'm trying to decide if I should give up tutoring at > our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move > or communicate " . > My son just got married last weekend. My other son is still single. I > want grandbabies and family gatherings and lots of good happy > memories. I'm afraid if they wait too long to have children, I won't > be able to be the grandmother I want to be. I'm afraid my unborn > grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening > (supposedly) we are supposed to be all happy go lucky and thrilled to > death to have this stupid disease. Would anyone expect a person with > MS to be thrilled upon hearing the diagnosis? Would anyone expect a > person with Parkinson's or MS to be happy with the fact that nobody > really cares to find a cure or treatment for their disease? Isn't our > disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Hi : I can certainly relate to your feelings of frustration. My son just got married in May and one day awhile after their marriage I was having a rather 'down day' and I said to Rob that I was feeling badly that if and when they have children that I won't be able to help him and out and he said " Mom you may not be able to help out in the way you once would but there are other ways you can help - with moral support and the experience I have gained raising my two children " . He also said I have to try and focus on the 'things I can do' and not the 'things I can't do'. It is hard to follow those words all the time but I sure try and try to focus on my present abilities. I just watched a program on Reeves and seeing the determination that man has had over the last 7 years and the hope that he still clings on to is an inspiration to me and many others. Take care and know that you are not alone in your feelings. Jo! Re: Still here > Alan, > You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . > My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Hi : I can certainly relate to your feelings of frustration. My son just got married in May and one day awhile after their marriage I was having a rather 'down day' and I said to Rob that I was feeling badly that if and when they have children that I won't be able to help him and out and he said " Mom you may not be able to help out in the way you once would but there are other ways you can help - with moral support and the experience I have gained raising my two children " . He also said I have to try and focus on the 'things I can do' and not the 'things I can't do'. It is hard to follow those words all the time but I sure try and try to focus on my present abilities. I just watched a program on Reeves and seeing the determination that man has had over the last 7 years and the hope that he still clings on to is an inspiration to me and many others. Take care and know that you are not alone in your feelings. Jo! Re: Still here > Alan, > You sound like I feel today. It seems as if I have more " down " days that I'd like to admit. > I gave my car to my son last month, my golf clubs to a very good friend, and now I'm trying to decide if I should give up tutoring at our church because it really exhausts me. > Like you, I don't want to be the " guy in the bed/chair who can't move or communicate " . > My son just got married last weekend. My other son is still single. I want grandbabies and family gatherings and lots of good happy memories. I'm afraid if they wait too long to have children, I won't be able to be the grandmother I want to be. I'm afraid my unborn grandchildren will never know the real me. > I'm sick and tired of being sick and tired! > I'd like to have one day that I didn't have to think about PLS. > What really upsets me is that because PLS is not life threatening (supposedly) we are supposed to be all happy go lucky and thrilled to death to have this stupid disease. Would anyone expect a person with MS to be thrilled upon hearing the diagnosis? Would anyone expect a person with Parkinson's or MS to be happy with the fact that nobody really cares to find a cure or treatment for their disease? Isn't our disease horrible enough to warrant some outrage? > TODAY I AM OUTRAGED! I WANT SOMETHING DONE ABOUT THIS STUPID DISEASE! > SO THERE! > Boy, I feel better now. Thanks for letting me get that off my chest. > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Hi Mike: Don't ever give up on your pipe-dreams as we all have to have something to keep us going!! I have my share also! Jo! Re: Still here > Alan, > Glad you are up and about and doing better. Must be the Vodka in the pump. > > Your comments about your wife being overworked and hating to see that. I > guess mine is overworked, too, but it's about time! Actually, she is > asleep before she gets into bed at night. She literally is falling > asleep as she gets into bed and just pulls the covers up automatically > while she is breathing regularly and deeply, so I know she's asleep. I > really wish I could do more with my 11 1/2 year old son, 9 1/2 year old > granddaughter, 9 month old grandson and the older kids as well. 34 year > old daughter (mother of two grandchildren), soon to be 32 year old son > and 24 year old son and his wife who live in Hudson NH, about 10 miles > from Rita H. > > I feel like I have had to give up a lot, too. I still have a 25 foot > sailboat I'd like to sell, but have had no offers yet. May have to take > it to Lake Michigan and let a yacht broker sell it for me. Won't get as > much, but can sell it that way. I would like to sail it one more time > with my son, though. He is really interested in it and I do believe I > could handle it in a light breeze. Just make certain I have a lifejacket > on. That may just be a pipe dream, though, > > Be well. > Mike Gray > > Alan Kirk wrote: > > > Thanks to all who responded. I was more down than usual. A friend's > > brother had just passed away from ALS, and then the post about the > > gentleman with PLS with little functionality hit my " depress button " . > > This really is a wonderful support group.. > > > > Ronnie, thanks for the suggestion, but my bed is pretty high already. > > The top hits me about mid-thigh. I thought that was part of the > > problem! I sit on the bed then I have to use the side rail (heels on > > rail, push up with legs and arms) to get into bed. I can see how too > > low of a bed would be a problem. Like a low, soft, comfy sofa - great > > to be in till you have to get out. > > > > Jo, I'm not quitting, just not liking it! > > > > Mike - Scotch in the pump could be an option, by age (of scotch). > > > > - Thanks for the rant. Well said. We do feel the same about > > this " Stinkin disease " , and it is nice to be supported by your email. > > I had to give up my tools, my house as you did) ...... We are all in > > the same boat, holding different oars(?). But we get ourselves up and > > usually its worth it. My daughter is 12. I sure wish (and pray) > > things were different so I could do more with her. My wife is over > > worked and I hate to see that. I feel like a lump on the couch. Love > > your line " I'm sick and tired of being sick and tired " > > > > Finally, I know many are worse off than I am. Thanks for your > > patience. I count my blessing every night. > > > > Alan Kirk > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Hi Mike: Don't ever give up on your pipe-dreams as we all have to have something to keep us going!! I have my share also! Jo! Re: Still here > Alan, > Glad you are up and about and doing better. Must be the Vodka in the pump. > > Your comments about your wife being overworked and hating to see that. I > guess mine is overworked, too, but it's about time! Actually, she is > asleep before she gets into bed at night. She literally is falling > asleep as she gets into bed and just pulls the covers up automatically > while she is breathing regularly and deeply, so I know she's asleep. I > really wish I could do more with my 11 1/2 year old son, 9 1/2 year old > granddaughter, 9 month old grandson and the older kids as well. 34 year > old daughter (mother of two grandchildren), soon to be 32 year old son > and 24 year old son and his wife who live in Hudson NH, about 10 miles > from Rita H. > > I feel like I have had to give up a lot, too. I still have a 25 foot > sailboat I'd like to sell, but have had no offers yet. May have to take > it to Lake Michigan and let a yacht broker sell it for me. Won't get as > much, but can sell it that way. I would like to sail it one more time > with my son, though. He is really interested in it and I do believe I > could handle it in a light breeze. Just make certain I have a lifejacket > on. That may just be a pipe dream, though, > > Be well. > Mike Gray > > Alan Kirk wrote: > > > Thanks to all who responded. I was more down than usual. A friend's > > brother had just passed away from ALS, and then the post about the > > gentleman with PLS with little functionality hit my " depress button " . > > This really is a wonderful support group.. > > > > Ronnie, thanks for the suggestion, but my bed is pretty high already. > > The top hits me about mid-thigh. I thought that was part of the > > problem! I sit on the bed then I have to use the side rail (heels on > > rail, push up with legs and arms) to get into bed. I can see how too > > low of a bed would be a problem. Like a low, soft, comfy sofa - great > > to be in till you have to get out. > > > > Jo, I'm not quitting, just not liking it! > > > > Mike - Scotch in the pump could be an option, by age (of scotch). > > > > - Thanks for the rant. Well said. We do feel the same about > > this " Stinkin disease " , and it is nice to be supported by your email. > > I had to give up my tools, my house as you did) ...... We are all in > > the same boat, holding different oars(?). But we get ourselves up and > > usually its worth it. My daughter is 12. I sure wish (and pray) > > things were different so I could do more with her. My wife is over > > worked and I hate to see that. I feel like a lump on the couch. Love > > your line " I'm sick and tired of being sick and tired " > > > > Finally, I know many are worse off than I am. Thanks for your > > patience. I count my blessing every night. > > > > Alan Kirk > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Hi Mike: Don't ever give up on your pipe-dreams as we all have to have something to keep us going!! I have my share also! Jo! Re: Still here > Alan, > Glad you are up and about and doing better. Must be the Vodka in the pump. > > Your comments about your wife being overworked and hating to see that. I > guess mine is overworked, too, but it's about time! Actually, she is > asleep before she gets into bed at night. She literally is falling > asleep as she gets into bed and just pulls the covers up automatically > while she is breathing regularly and deeply, so I know she's asleep. I > really wish I could do more with my 11 1/2 year old son, 9 1/2 year old > granddaughter, 9 month old grandson and the older kids as well. 34 year > old daughter (mother of two grandchildren), soon to be 32 year old son > and 24 year old son and his wife who live in Hudson NH, about 10 miles > from Rita H. > > I feel like I have had to give up a lot, too. I still have a 25 foot > sailboat I'd like to sell, but have had no offers yet. May have to take > it to Lake Michigan and let a yacht broker sell it for me. Won't get as > much, but can sell it that way. I would like to sail it one more time > with my son, though. He is really interested in it and I do believe I > could handle it in a light breeze. Just make certain I have a lifejacket > on. That may just be a pipe dream, though, > > Be well. > Mike Gray > > Alan Kirk wrote: > > > Thanks to all who responded. I was more down than usual. A friend's > > brother had just passed away from ALS, and then the post about the > > gentleman with PLS with little functionality hit my " depress button " . > > This really is a wonderful support group.. > > > > Ronnie, thanks for the suggestion, but my bed is pretty high already. > > The top hits me about mid-thigh. I thought that was part of the > > problem! I sit on the bed then I have to use the side rail (heels on > > rail, push up with legs and arms) to get into bed. I can see how too > > low of a bed would be a problem. Like a low, soft, comfy sofa - great > > to be in till you have to get out. > > > > Jo, I'm not quitting, just not liking it! > > > > Mike - Scotch in the pump could be an option, by age (of scotch). > > > > - Thanks for the rant. Well said. We do feel the same about > > this " Stinkin disease " , and it is nice to be supported by your email. > > I had to give up my tools, my house as you did) ...... We are all in > > the same boat, holding different oars(?). But we get ourselves up and > > usually its worth it. My daughter is 12. I sure wish (and pray) > > things were different so I could do more with her. My wife is over > > worked and I hate to see that. I feel like a lump on the couch. Love > > your line " I'm sick and tired of being sick and tired " > > > > Finally, I know many are worse off than I am. Thanks for your > > patience. I count my blessing every night. > > > > Alan Kirk > > > > > > Quote Link to comment Share on other sites More sharing options...
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