Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 NOW FRANK, I SIT HERE LIKE A GOOD GIRL AND EAVESDROP ON ALL YOU GUYS. SO WHAT DO YOU DO. YOU START USING A DIFFERENT LANGUAGE ON ME. YOU REMIND ME OF MY MOTHER AND HER SISTERS. WHEN THEY WOULD GOSSIP AND DIDN'T WANT US KIDS TO KNOW WHAT THEY WERE SAYING THEY WOULD TALK IN ITALIAN. THE WORST THING SHE NEVER TAUGHT US THE LANGUAGE. BY THE WAY. WHAT A NICE GESTURE. BONNIE - OH Re: PLS web site > Beste Jos en Marcel, > > Hoe gaat het in Holland, mijn vrouw en ik zijn al vanaf 1953 in Canada. > > Hoe vind je het dat je gaat zoeken op het internet for PLS en dat je een > web site find dat door een hollander is gemaakt die in Vancouver Canada > woont. > > Hier is een lijst van alle PLS web sites die ik gemaakt hebt: > > pls web site: http://www.geocities.com/freyerse/ > pls data base: http://www.geocities.com/freyerse/plsdb.html > pls find: http://www.geocities.com/freyerse/find.html > pls welcome: http://www.geocities.com/freyerse/wc.html > als web site: http://members.shaw.ca/alsbc/index.html > > > > Het aller beste, > > Reyerse your ALS Pal > jreyerse@... tel: > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 HI JOS, DON'T WORRY, I KNEW THERE WASN'T, I WAS JUST KIDDING AROUND. WELCOME TO THE GROUP. AND TO ALL THE OTHER NEW ONES. I AM A CARE GIVER FOR MY HUSBAND DON. HE ISN'T DOING TO WELL NOW AND WE HAVE HOME HEALTH A COUPLE HOURS A DAY TO HELP ME WITH HIM. WE ARE IN THE PROCESS OF CONFIRMING HIS DIAGNOSIS. HE WAS ORIGINALLY DIAGNOSED WITH PLS NOW IT LOOKS LIKE ALS. HE HAS JUST STARTED WITH PHYSICAL THERAPY. MAINLY TO TEACH HIM NEW TRANSFER METHODS. AND TO TRY AND LOOSEN THOSE LEGS UP A LITTLE. WE GO TO SEE DR FINK AT THE U OF MICHIGAN ON THE 9TH NEXT MONTH. WE ARE TO GET RESULTS OF TESTS THAT WERE GIVEN HIM THE LAST TIME WE WERE THERE. THE BEST TO YOU AND EVERY ONE ELSE. BONNIE & DON FROM OHIO Re: PLS web site > > > > Beste Jos en Marcel, > > > > Hoe gaat het in Holland, mijn vrouw en ik zijn al vanaf 1953 in Canada. > > > > Hoe vind je het dat je gaat zoeken op het internet for PLS en dat je een > > web site find dat door een hollander is gemaakt die in Vancouver Canada > > woont. > > > > Hier is een lijst van alle PLS web sites die ik gemaakt hebt: > > > > pls web site: http://www.geocities.com/freyerse/ > > pls data base: http://www.geocities.com/freyerse/plsdb.html > > pls find: http://www.geocities.com/freyerse/find.html > > pls welcome: http://www.geocities.com/freyerse/wc.html > > als web site: http://members.shaw.ca/alsbc/index.html > > > > > > > > Het aller beste, > > > > Reyerse your ALS Pal > > jreyerse@... tel: > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 HI JOS, DON'T WORRY, I KNEW THERE WASN'T, I WAS JUST KIDDING AROUND. WELCOME TO THE GROUP. AND TO ALL THE OTHER NEW ONES. I AM A CARE GIVER FOR MY HUSBAND DON. HE ISN'T DOING TO WELL NOW AND WE HAVE HOME HEALTH A COUPLE HOURS A DAY TO HELP ME WITH HIM. WE ARE IN THE PROCESS OF CONFIRMING HIS DIAGNOSIS. HE WAS ORIGINALLY DIAGNOSED WITH PLS NOW IT LOOKS LIKE ALS. HE HAS JUST STARTED WITH PHYSICAL THERAPY. MAINLY TO TEACH HIM NEW TRANSFER METHODS. AND TO TRY AND LOOSEN THOSE LEGS UP A LITTLE. WE GO TO SEE DR FINK AT THE U OF MICHIGAN ON THE 9TH NEXT MONTH. WE ARE TO GET RESULTS OF TESTS THAT WERE GIVEN HIM THE LAST TIME WE WERE THERE. THE BEST TO YOU AND EVERY ONE ELSE. BONNIE & DON FROM OHIO Re: PLS web site > > > > Beste Jos en Marcel, > > > > Hoe gaat het in Holland, mijn vrouw en ik zijn al vanaf 1953 in Canada. > > > > Hoe vind je het dat je gaat zoeken op het internet for PLS en dat je een > > web site find dat door een hollander is gemaakt die in Vancouver Canada > > woont. > > > > Hier is een lijst van alle PLS web sites die ik gemaakt hebt: > > > > pls web site: http://www.geocities.com/freyerse/ > > pls data base: http://www.geocities.com/freyerse/plsdb.html > > pls find: http://www.geocities.com/freyerse/find.html > > pls welcome: http://www.geocities.com/freyerse/wc.html > > als web site: http://members.shaw.ca/alsbc/index.html > > > > > > > > Het aller beste, > > > > Reyerse your ALS Pal > > jreyerse@... tel: > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 HI JOS, DON'T WORRY, I KNEW THERE WASN'T, I WAS JUST KIDDING AROUND. WELCOME TO THE GROUP. AND TO ALL THE OTHER NEW ONES. I AM A CARE GIVER FOR MY HUSBAND DON. HE ISN'T DOING TO WELL NOW AND WE HAVE HOME HEALTH A COUPLE HOURS A DAY TO HELP ME WITH HIM. WE ARE IN THE PROCESS OF CONFIRMING HIS DIAGNOSIS. HE WAS ORIGINALLY DIAGNOSED WITH PLS NOW IT LOOKS LIKE ALS. HE HAS JUST STARTED WITH PHYSICAL THERAPY. MAINLY TO TEACH HIM NEW TRANSFER METHODS. AND TO TRY AND LOOSEN THOSE LEGS UP A LITTLE. WE GO TO SEE DR FINK AT THE U OF MICHIGAN ON THE 9TH NEXT MONTH. WE ARE TO GET RESULTS OF TESTS THAT WERE GIVEN HIM THE LAST TIME WE WERE THERE. THE BEST TO YOU AND EVERY ONE ELSE. BONNIE & DON FROM OHIO Re: PLS web site > > > > Beste Jos en Marcel, > > > > Hoe gaat het in Holland, mijn vrouw en ik zijn al vanaf 1953 in Canada. > > > > Hoe vind je het dat je gaat zoeken op het internet for PLS en dat je een > > web site find dat door een hollander is gemaakt die in Vancouver Canada > > woont. > > > > Hier is een lijst van alle PLS web sites die ik gemaakt hebt: > > > > pls web site: http://www.geocities.com/freyerse/ > > pls data base: http://www.geocities.com/freyerse/plsdb.html > > pls find: http://www.geocities.com/freyerse/find.html > > pls welcome: http://www.geocities.com/freyerse/wc.html > > als web site: http://members.shaw.ca/alsbc/index.html > > > > > > > > Het aller beste, > > > > Reyerse your ALS Pal > > jreyerse@... tel: > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 hello Bonnie just read your posting and I am wondering why you think ALS now and not PLS? What is going on to make you think this? My husband also is not doing well and I am wondering if this may not be the problem with him. Where is your husband at with his physical ability? Mine is in a wheelchair full time speech is all but gone lots and lots of bladder problems. He is always chocking when eating. Has lost weight in the last month. Just wonder if any of this is going on with your husband and that is why you are thinking ALS rather then PLS? The last time I spoke with Dr. Fink I asked him how to tell the differance with symtoms and his response was that it really did not matter ALS or PLS all depends on how fast it progresses. Will any answers you can give me will be of great help thanks and hope all goes well for you with Dr Fink. Shirley (michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hello Bonnie, So you maked a joke, thats nice. I thought you was really angry about . But happely its only kidding around, what ever that is. This is what Marcel and I always do makes jokes and walk like fools around. Marcel told me this morning he felll down again on the floor. When he was back on his feet again he told his wife to clean better under the cabinet there was a lot of dust. About jokes. I think it is important to hold your humor and joy. Bonnie i hope for you and Don that everything is going well when you must go see Dr Fink. All teh best wishes from me Jos from Heerlen Holland Re: PLS web site > > > > Beste Jos en Marcel, > > > > Hoe gaat het in Holland, mijn vrouw en ik zijn al vanaf 1953 in Canada. > > > > Hoe vind je het dat je gaat zoeken op het internet for PLS en dat je een > > web site find dat door een hollander is gemaakt die in Vancouver Canada > > woont. > > > > Hier is een lijst van alle PLS web sites die ik gemaakt hebt: > > > > pls web site: http://www.geocities.com/freyerse/ > > pls data base: http://www.geocities.com/freyerse/plsdb.html > > pls find: http://www.geocities.com/freyerse/find.html > > pls welcome: http://www.geocities.com/freyerse/wc.html > > als web site: http://members.shaw.ca/alsbc/index.html > > > > > > > > Het aller beste, > > > > Reyerse your ALS Pal > > jreyerse@... tel: > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hello Bonnie, So you maked a joke, thats nice. I thought you was really angry about . But happely its only kidding around, what ever that is. This is what Marcel and I always do makes jokes and walk like fools around. Marcel told me this morning he felll down again on the floor. When he was back on his feet again he told his wife to clean better under the cabinet there was a lot of dust. About jokes. I think it is important to hold your humor and joy. Bonnie i hope for you and Don that everything is going well when you must go see Dr Fink. All teh best wishes from me Jos from Heerlen Holland Re: PLS web site > > > > Beste Jos en Marcel, > > > > Hoe gaat het in Holland, mijn vrouw en ik zijn al vanaf 1953 in Canada. > > > > Hoe vind je het dat je gaat zoeken op het internet for PLS en dat je een > > web site find dat door een hollander is gemaakt die in Vancouver Canada > > woont. > > > > Hier is een lijst van alle PLS web sites die ik gemaakt hebt: > > > > pls web site: http://www.geocities.com/freyerse/ > > pls data base: http://www.geocities.com/freyerse/plsdb.html > > pls find: http://www.geocities.com/freyerse/find.html > > pls welcome: http://www.geocities.com/freyerse/wc.html > > als web site: http://members.shaw.ca/alsbc/index.html > > > > > > > > Het aller beste, > > > > Reyerse your ALS Pal > > jreyerse@... tel: > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hello Bonnie, So you maked a joke, thats nice. I thought you was really angry about . But happely its only kidding around, what ever that is. This is what Marcel and I always do makes jokes and walk like fools around. Marcel told me this morning he felll down again on the floor. When he was back on his feet again he told his wife to clean better under the cabinet there was a lot of dust. About jokes. I think it is important to hold your humor and joy. Bonnie i hope for you and Don that everything is going well when you must go see Dr Fink. All teh best wishes from me Jos from Heerlen Holland Re: PLS web site > > > > Beste Jos en Marcel, > > > > Hoe gaat het in Holland, mijn vrouw en ik zijn al vanaf 1953 in Canada. > > > > Hoe vind je het dat je gaat zoeken op het internet for PLS en dat je een > > web site find dat door een hollander is gemaakt die in Vancouver Canada > > woont. > > > > Hier is een lijst van alle PLS web sites die ik gemaakt hebt: > > > > pls web site: http://www.geocities.com/freyerse/ > > pls data base: http://www.geocities.com/freyerse/plsdb.html > > pls find: http://www.geocities.com/freyerse/find.html > > pls welcome: http://www.geocities.com/freyerse/wc.html > > als web site: http://members.shaw.ca/alsbc/index.html > > > > > > > > Het aller beste, > > > > Reyerse your ALS Pal > > jreyerse@... tel: > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Bonnie...I am also the caregiver here...my husband was diagnosed with PLS on January 3, 2002 at the U of M...Dr. Fink is also our doctor...we don't see him till Sept.13...hope all goes well for you....Patti in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi Patti, I was wondering is palpar your screen name for aol? I would like to chat with you on line if I could. I put that on my buddy list but you have not come up yet. So was just wondering if you have another screen name or if you just have not been on line when I have. Hope all is going well with you and your husband. Hope we can get together on one of the dates you sent me that you will be in Ann Arbor. I would really like that. Bye from Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi Patti, I was wondering is palpar your screen name for aol? I would like to chat with you on line if I could. I put that on my buddy list but you have not come up yet. So was just wondering if you have another screen name or if you just have not been on line when I have. Hope all is going well with you and your husband. Hope we can get together on one of the dates you sent me that you will be in Ann Arbor. I would really like that. Bye from Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi Bonnie, I am about 45 minutes from Ann Arbor. So guess I would be the closest. If you would like to do this just let me know I will do what I can to make it happen. I know my husband would not attend he is not a very social person never has been. But I would love to meet with anyone. I did attend the meeting that was held here a few months back but was not the same as really getting to sit and talk one on one with someone. So Patti and Bonnie let me know what you think I will do what I can at this end. Thanks Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi Bonnie, I am about 45 minutes from Ann Arbor. So guess I would be the closest. If you would like to do this just let me know I will do what I can to make it happen. I know my husband would not attend he is not a very social person never has been. But I would love to meet with anyone. I did attend the meeting that was held here a few months back but was not the same as really getting to sit and talk one on one with someone. So Patti and Bonnie let me know what you think I will do what I can at this end. Thanks Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi Bonnie, I am about 45 minutes from Ann Arbor. So guess I would be the closest. If you would like to do this just let me know I will do what I can to make it happen. I know my husband would not attend he is not a very social person never has been. But I would love to meet with anyone. I did attend the meeting that was held here a few months back but was not the same as really getting to sit and talk one on one with someone. So Patti and Bonnie let me know what you think I will do what I can at this end. Thanks Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Shirley...yes Palpar is my AOL screen name...I will make sure to add you to my list..that is maybe why you haven't seen me on...although I took a part time temp job that I have been working steady at full time so I am not on during the day hardly at all anymore...I used to be on all day..but so much has changed...it would be nice to meet...to actually have someone going through the same things...we will chat soon....Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Bonnie..we are about 1 1/2 hours from AA...live in Saginaw...wouldn't it be great to send the guys in to an appointment and we go to lunch..lol...but then I wouldn't know anything about the appointment as Phil tries to keep stuff from me...but yes it would be nice...we have been feeling very isolated the last 6 months...we knew no one and of course U of M doesn't give out names...we participate in AnneMarie Schonemann's clinic also...I enjoy that...you get everything checked at once and can ask lots of questions that usually get answered...hope your experiences have been as good as ours considering the circumstances...will talk soon...Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Bonnie..we are about 1 1/2 hours from AA...live in Saginaw...wouldn't it be great to send the guys in to an appointment and we go to lunch..lol...but then I wouldn't know anything about the appointment as Phil tries to keep stuff from me...but yes it would be nice...we have been feeling very isolated the last 6 months...we knew no one and of course U of M doesn't give out names...we participate in AnneMarie Schonemann's clinic also...I enjoy that...you get everything checked at once and can ask lots of questions that usually get answered...hope your experiences have been as good as ours considering the circumstances...will talk soon...Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Bonnie..we are about 1 1/2 hours from AA...live in Saginaw...wouldn't it be great to send the guys in to an appointment and we go to lunch..lol...but then I wouldn't know anything about the appointment as Phil tries to keep stuff from me...but yes it would be nice...we have been feeling very isolated the last 6 months...we knew no one and of course U of M doesn't give out names...we participate in AnneMarie Schonemann's clinic also...I enjoy that...you get everything checked at once and can ask lots of questions that usually get answered...hope your experiences have been as good as ours considering the circumstances...will talk soon...Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Shirley...my husband is VERY social and so this speaking and walking trouble has been hard for him...but he would like to meet too I am sure..let's see what we can work out...thanks Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 HI PATTI AND SHIRLEY HOW FAR ARE YOU ALL FROM ANN ARBOR? IF IT IS A CENTRAL LOCATION MAYBE WE COULD ALL GET TOGETHER SOMETIME. IT'S ABOUT 2 HOURS FOR US HOW ABOUT YOU? WE MIGHT HAVE MORE FUN GETTING TOGETHER WHEN THERE IS NO APPOINTMENTS TO KEEP AND WILL GIVE US ALL MORE TIME TO VISIT. IT MIGHT BE A GOOD SPOT FOR OUR OWN CONNECTION FOR THIS PART OF THE STATES. ANYONE INTERESTED? I HAD A CONNECTION HERE ONCE AND ALTHOUGH IT WAS SMALL WE REALLY ENJOYED IT AND JUST LOVED MEETING OTHERS. WE CONSIDER THEM GOOD FRIENDS. WE WOULD NEED SOMEONE CLOSE ENOUGH TO MAKE RESTAURANT ARRANGEMENTS. WE COULD ALL GAB THE DAY AWAY. BONNIE OH Re: Re: PLS web site > Bonnie...I am also the caregiver here...my husband was diagnosed with PLS on > January 3, 2002 at the U of M...Dr. Fink is also our doctor...we don't see > him till Sept.13...hope all goes well for you....Patti in Michigan > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 THIS LOOKS GOOD. SHIRLEY WOULD YOU LIKE TO CHECK AROUND FOR SOMEPLACE EASY TO FIND WHERE WE COULD GET TOGETHER? MAYBE SOME OTHERS MIGHT WANT TO JOIN US. KEEP IT SIMPLE AND AS INEXPENSIVE AS WE CAN AND STILL BE NICE. SORRY I LOST MY JOB LAST MONTH AND WE ARE TRYING TO LIVE OFF DON'S DISABILITY INCOME. THAT IS A WHO OTHER ROTTEN STORY. I REALLY DO NEED SOMETHING TO LOOK FORWARD TO. THANKS SHIRLEY FOR OFFERING. SO I GUESS THE FIRST ORDER OF BUSINESS IS WHEN THEN WHERE. PATTI YOU AND SHIRLEY GET TOGETHER AND FIGURE OUT WHEN WOULD BE BEST FOR YOU TWO. AS LONG AS I HAVE A TANK OF GAS WE WILL MAKE IT. THANKS, BONNIE Re: Re: PLS web site > Shirley...my husband is VERY social and so this speaking and walking trouble > has been hard for him...but he would like to meet too I am sure..let's see > what we can work out...thanks Patti > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Shirley, I'm sorry to hear about your husband's progression, as I am about Bonnie's. I don't recall how long your husband has had symptoms, or yours, Bonnie. Could you both fill me in. How rapid was/is the progression? When did the rapidness begin? After a few months or a few years? Several of us have had symptoms for years- from 5 to 21 or longer- with no real progress noticeable until we look back and just have that little insight that we can no longer do some things we used to do. This rapidity concerns me and I wonder if there is a reason behind it. I have no hunches because I have no data. But Dr. Fink may have some ideas. Please let us all know when you find out anything. Mike Gray At 02:06 PM 7/17/02 -0400, you wrote: >hello Bonnie just read your posting and I am wondering why you think ALS now >and not PLS? What is going on to make you think this? My husband also is not >doing well and I am wondering if this may not be the problem with him. Where >is your husband at with his physical ability? Mine is in a wheelchair full >time speech is all but gone lots and lots of bladder problems. He is always >chocking when eating. Has lost weight in the last month. Just wonder if any >of this is going on with your husband and that is why you are thinking ALS >rather then PLS? The last time I spoke with Dr. Fink I asked him how to tell >the differance with symtoms and his response was that it really did not >matter ALS or PLS all depends on how fast it progresses. Will any answers you >can give me will be of great help thanks and hope all goes well for you with >Dr Fink. Shirley (michigan) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Hi Mike he has been ill about 10 years I guess it has been. First was dignosed with ms. But is going down hill fast. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 HI MIKE DON WAS HAVING PROBLEMS THE WINTER OF 99. HIS LEGS WOULD STIFFEN WHEN THEY GOT COLD. HE THOUGHT IT WAS ARTHRITIS FROM WORKING ON CONCRETE FOR ALL HIS YEARS. THEN AT CHRISTMAS HE FELL UP THE STAIRS AT MY BROTHERS. THAT WAS IT TO THE DR WE WENT AND LIKE MOST EVERYONE ELSE THEY DIDN'T KNOW WHAT THEY WERE LOOKING AT. THEY WERE LOOKING FOR SOMETHING WITH HIS BONES. SINCE I WORKED AT A NURSING HOME AND REHAB HOSPITAL I BECAME VERY UPSET. I EVEN KNEW THAT TOE DROP WAS NEUROLOGICAL AND NOT SKELETAL. SO I INSISTED ON A REFERRAL TO A NEUROLOGIST. WELL IT TOOK UNTIL OCT OF 2000 FOR HIM TO BE DX WITH PLS. HE PROGRESSION WAS NOT WHAT I CONSIDERED SLOW AND AFTER MEETING OTHERS WITH PLS I KNEW HE WAS MUCH FURTHER DOWN IN MANY WAYS THAN THEY WERE. SO WE CHANGED NEUROLOGISTS ESPECIALLY SINCE THE ONE HE HAD STATED THAT THERE WAS NOTHING TO BE DONE AND NO MEDS WOULD HELP. WELL I FOUND THIS GROUP AND KNEW BETTER. I HAD TO BATTLE HIM FOR THERAPY ORDERS AND FOR THE AFO'S. SO WE GOT A REFERRAL TO THE NEUROLOGIST I HAD WANTED TO BEGIN WITH. HE IS DOING A GOOD JOB FOR US A VERY CARING PERSON. THEN WE HEARD ABOUT DR. FINK AND HE HAS HELPED TO GET US IN TO SEE HIM. SO DON IS BEING RE DIAGNOSED NOW. FROM WHAT DR. FINK WROTE OUR DR. HE THINKS IT IS ALS BUT WE GET THE RESULTS NEXT MONTH. I HOPE THIS HELPS. AND I LOVED YOUR LETTER. ALSO MADE ME CRY. I TELL EVERYONE TO TIE A KNOT IN YOUR ROPE AND IF YOU SLIP TIE A NEW ONE. THAT IS WHAT WE TRY TO DO. BEST TO YOU BONNIE Re: Re: PLS web site > Shirley, > > I'm sorry to hear about your husband's progression, as I am about Bonnie's. > I don't recall how long your husband has had symptoms, or yours, Bonnie. > Could you both fill me in. How rapid was/is the progression? When did the > rapidness begin? After a few months or a few years? Several of us have had > symptoms for years- from 5 to 21 or longer- with no real progress > noticeable until we look back and just have that little insight that we can > no longer do some things we used to do. This rapidity concerns me and I > wonder if there is a reason behind it. I have no hunches because I have no > data. But Dr. Fink may have some ideas. Please let us all know when you > find out anything. > > Mike Gray > > At 02:06 PM 7/17/02 -0400, you wrote: > >hello Bonnie just read your posting and I am wondering why you think ALS now > >and not PLS? What is going on to make you think this? My husband also is not > >doing well and I am wondering if this may not be the problem with him. Where > >is your husband at with his physical ability? Mine is in a wheelchair full > >time speech is all but gone lots and lots of bladder problems. He is always > >chocking when eating. Has lost weight in the last month. Just wonder if any > >of this is going on with your husband and that is why you are thinking ALS > >rather then PLS? The last time I spoke with Dr. Fink I asked him how to tell > >the differance with symtoms and his response was that it really did not > >matter ALS or PLS all depends on how fast it progresses. Will any answers you > >can give me will be of great help thanks and hope all goes well for you with > >Dr Fink. Shirley (michigan) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 Bonnie, I was so very pleased to see a post from you. I have followed your notes for a year and a half and have always been inspired by your perseverence and wonderful attitude. During your " posting " absence I have thought of you and Don often. I am sad to learn of the progression of Don's illness and the loss of your job. I believe he is very lucky to have you and I pray that your needs are met during this rough time. Take care. --------------------------------- Quote Link to comment Share on other sites More sharing options...
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