Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Trish, I work all day on the computer and usually do not get on much in the evenings. 8:00 pm EST (9:00 pm CST) is a little late for me anyway seeing the computer is in room and we have to be up at 5:00 am every day. She goes to bed at 8:00 pm on week nights. You all have fun but I won't be joining you on the weekdays! Hugz- Terrie in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Our lives are not consist of only ALS/PLS. Life's is full of love and surprises. If you have any chance of loving someone ore to be loved by, live it as deep as possible. These are the days of our best days before bad ones. Best wishes Alper Kaya MD Ophthalmologist Izmir /TURKEY +90 232 239 02 29 Home +90 505 689 45 90 Cell Eller ellerbert@...> yazdı: Hey Everyone, Im sorry I havent posted in a while but have been kinda busy and trying to get stuff straightened out in my life.My wife told me about a month ago that she wanted to seperate.I guess the main reason as she told me was she didnt know how she would take care of me when I got worse.This came about after an ALS support group and she talked to one of the wives of ALS friend.We have met a few times and me and him got along great.He couldnt talk but had a machine that he could type in what he wanted to say.I met him a little over a year ago and he was walking but could barely talk then but we got along I guess because we knew what each other was going thru.He went down hill quite fast in the past year and last time I saw him in February his wife told my wife he was giving up.Well he died last month and I know hes better off where he is now.It has got me to thinking and I guess my wife had been thinking too lol.Well on the 28th of May I will be moving back to North Carolina with my mom and the the rest of my family lives close by.It will be nice to move back to my home town and be able to see my family again but Im not sure what Im gonna do about dating or not dating.I dont want to spend the rest of my life without a wife or girl friend but dont want to be a burden on anyone else.Has anyone else had this dilema? If so please let me what you decided.Im still walking even though walking getting worse but can still talk and get around pretty good and hope I still got a few years to go lol.Hopefully I will get a few responses to this to help me decide. Your Friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , I'm so sorry to hear that; it's seems strange to me but everyone is different. Is your diagnosis PLS or ALS? We try and encourage caretakers to participate in our discussions too but, more often than not, it's just the people with the disorder. At our National Conferences, we have had special break-out sessions for spouses and caretakers so they can talk with other spouses without their spouse in the room. It has been well received and appreciated. As far as I know, none of our local Connections have had these kind of sessions probably because of the number of attendees. Don is quite the exception and he lives in NC; I'm hoping that you have read some of his words of wisdom. We seem to have a lot of people with PLS/HSP in NC and the surrounding states, so you'd have several people to draw from. Don holds an annual Connection called Autumn in Carolina, the next one will take place on October 6-7. In case you haven't already done so, check out this database _http://www.geocities.com/freyerse/plsdb.html_ (http://www.geocities.com/freyerse/plsdb.html) G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hey, and whoever wants to read this missive : I met , and eventually , married the woman of my dreams, . She knew all about my disease and she decided to marry me, no matter how long we had together ! which will be a long time (if I have anything to do with it !) In spite of the terrible symptoms of PLS , she decided that I was worth it, and she had the wedding of my dreams ! I , only say this , because , there is hope; even if you feel worthless and you might want to give up the fight. *I* had given up and now I want to live; now I have an angel to fight it with me. All the best, " Alper Kaya, MD " alpkaya61@...> wrote: Our lives are not consist of only ALS/PLS. Life's is full of love and surprises. If you have any chance of loving someone ore to be loved by, live it as deep as possible. These are the days of our best days before bad ones. Best wishes Alper Kaya MD Ophthalmologist Izmir /TURKEY +90 232 239 02 29 Home +90 505 689 45 90 Cell Eller ellerbert@...> yazdı: Hey Everyone, Im sorry I havent posted in a while but have been kinda busy and trying to get stuff straightened out in my life.My wife told me about a month ago that she wanted to seperate.I guess the main reason as she told me was she didnt know how she would take care of me when I got worse.This came about after an ALS support group and she talked to one of the wives of ALS friend.We have met a few times and me and him got along great.He couldnt talk but had a machine that he could type in what he wanted to say.I met him a little over a year ago and he was walking but could barely talk then but we got along I guess because we knew what each other was going thru.He went down hill quite fast in the past year and last time I saw him in February his wife told my wife he was giving up.Well he died last month and I know hes better off where he is now.It has got me to thinking and I guess my wife had been thinking too lol.Well on the 28th of May I will be moving back to North Carolina with my mom and the the rest of my family lives close by.It will be nice to move back to my home town and be able to see my family again but Im not sure what Im gonna do about dating or not dating.I dont want to spend the rest of my life without a wife or girl friend but dont want to be a burden on anyone else.Has anyone else had this dilema? If so please let me what you decided.Im still walking even though walking getting worse but can still talk and get around pretty good and hope I still got a few years to go lol.Hopefully I will get a few responses to this to help me decide. Your Friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi , So sorry to hear about you and your wife. I am single and 35 and wasn't actively searching for anyone when i got ill 3 years ago and am not quite ready to go there now as it takes so much energy just to get thru a day and the energy to date seems daunting. Perhaps there is still hope for you and your wife? Am curious, as asked about whether or not you have ALS or PLS, as the course is generally quite different. Hell, there is that physics guy whose name escapes me this morning, who has ALS and is still out there solving problems in the universe! Each person's course is different. I have PLS and already cannot walk and have trouble with arms too after only 3 years (well, this was the first year), so one can never really know how it will go. I am sure that the difficulties in seeing your friend decline and such has been so hard on the both of you. In this group there are lots of married folks whose spouses are right there with them fighting the good fight. and then there are lots of spunky single people who are fighting the good fight as well. whichever you end up there is support out here for you and in real life......lots of folks up there in NC for sure. sure wish your wife could talk to one of the caregivers here within our group. hang in there, lots of changes sure makes our bodies fight back at us a bit. keep us posted in how you are as much as you can. Tawny Eller ellerbert@...> wrote: Hey Everyone, Im sorry I havent posted in a while but have been kinda busy and trying to get stuff straightened out in my life.My wife told me about a month ago that she wanted to seperate.I guess the main reason as she told me was she didnt know how she would take care of me when I got worse.This came about after an ALS support group and she talked to one of the wives of ALS friend.We have met a few times and me and him got along great.He couldnt talk but had a machine that he could type in what he wanted to say.I met him a little over a year ago and he was walking but could barely talk then but we got along I guess because we knew what each other was going thru.He went down hill quite fast in the past year and last time I saw him in February his wife told my wife he was giving up.Well he died last month and I know hes better off where he is now.It has got me to thinking and I guess my wife had been thinking too lol.Well on the 28th of May I will be moving back to North Carolina with my mom and the the rest of my family lives close by.It will be nice to move back to my home town and be able to see my family again but Im not sure what Im gonna do about dating or not dating.I dont want to spend the rest of my life without a wife or girl friend but dont want to be a burden on anyone else.Has anyone else had this dilema? If so please let me what you decided.Im still walking even though walking getting worse but can still talk and get around pretty good and hope I still got a few years to go lol.Hopefully I will get a few responses to this to help me decide. Your Friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 , My wife died 3 August 2004 and I am now dating a wounderful women. I had a Dx of PLS Nov. 2003. I walk with a cane and have some slurred speach. She has looked at the PLS web site and I have told her all I know about the disease. We are getting married in October. I am so blessed that I found someone to be with. Do not let this crazy thing get you down. There is always someone out there for us all we just have to look. I was lucky and found her. Best of luck to you and get out there and date. Dennis in Alabama --- Eller ellerbert@...> wrote: > Hey Everyone, > Im sorry I havent posted in a while but have been > kinda busy and > trying to get stuff straightened out in my life.My > wife told me > about a month ago that she wanted to seperate.I > guess the main > reason as she told me was she didnt know how she > would take care of > me when I got worse.This came about after an ALS > support group and > she talked to one of the wives of ALS friend.We have > met a few times > and me and him got along great.He couldnt talk but > had a machine > that he could type in what he wanted to say.I met > him a little over > a year ago and he was walking but could barely talk > then but we got > along I guess because we knew what each other was > going thru.He went > down hill quite fast in the past year and last time > I saw him in > February his wife told my wife he was giving up.Well > he died last > month and I know hes better off where he is now.It > has got me to > thinking and I guess my wife had been thinking too > lol.Well on the > 28th of May I will be moving back to North Carolina > with my mom and > the the rest of my family lives close by.It will be > nice to move > back to my home town and be able to see my family > again but Im not > sure what Im gonna do about dating or not dating.I > dont want to > spend the rest of my life without a wife or girl > friend but dont > want to be a burden on anyone else.Has anyone else > had this dilema? > If so please let me what you decided.Im still > walking even though > walking getting worse but can still talk and get > around pretty good > and hope I still got a few years to go lol.Hopefully > I will get a > few responses to this to help me decide. > Your Friend > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Hey , Basically the same here. I'm still going to try to date, haven't learned my lesson yet. Plus I guess I just like women to much. But I let them know up front what I have and the possible out come. So far, no takers yet but I'll keep trying. I will live for as long as I can. HEY ALL To: PLS-FRIENDS Hey Everyone, Im sorry I havent posted in a while but have been kinda busy and trying to get stuff straightened out in my life.My wife told me about a month ago that she wanted to seperate.I guess the main reason as she told me was she didnt know how she would take care of me when I got worse.This came about after an ALS support group and she talked to one of the wives of ALS friend.We have met a few times and me and him got along great.He couldnt talk but had a machine that he could type in what he wanted to say.I met him a little over a year ago and he was walking but could barely talk then but we got along I guess because we knew what each other was going thru.He went down hill quite fast in the past year and last time I saw him in February his wife told my wife he was giving up.Well he died last month and I know hes better off where he is now.It has got me to thinking and I guess my wife had been thinking too lol.Well on the 28th of May I will be moving back to North Carolina with my mom and the the rest of my family lives close by.It will be nice to move back to my home town and be able to see my family again but Im not sure what Im gonna do about dating or not dating.I dont want to spend the rest of my life without a wife or girl friend but dont want to be a burden on anyone else.Has anyone else had this dilema? If so please let me what you decided.Im still walking even though walking getting worse but can still talk and get around pretty good and hope I still got a few years to go lol.Hopefully I will get a few responses to this to help me decide. Your Friend Quote Link to comment Share on other sites More sharing options...
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