Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hello welcome to the club you have found the spot. These folks are great people and are more then willing to answer any questions you may have. Shirley (michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi : I was diagnosed with PLS in May/02 and would be welcome in communicating with you either through the group or you could e-mail me personally @ joannetaniwa@... Jo! my mom has pls > hi, i'm trying to find out if anyone is out there with PLS or a > family member with it. my mom has just been diagnosed and i'm > interesed in talking to someone. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi , You've come to the right place. Most of us on the list have PLS, the rest are spouses or loved ones of PLS. Tell us more about your mom. How is she affected? Do you have any questions or do you need more info on PLS? We're here for you. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html my mom has pls > hi, i'm trying to find out if anyone is out there with PLS or a > family member with it. my mom has just been diagnosed and i'm > interesed in talking to someone. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 , This is the right group to come to for the information you are seeking. You will be hearing a lot about PLS plus 2 websites you can visit to learn more. EVERYONE on this site has PLS or is a caregiver for someone who does. So, ask away. We are more than willing to share and give you answers to questions you may have. I do want to emphasize that everyone with PLS has a different course of progress. Some of progress slowly and some more rapidly. It is not life threatening, but it is definitely a changer of living. Feel free to write me personally at the email address that comes with this, or just write to the whole group. You will be receiving many responses before the day is over. All will be positive and welcoming. You are among friends here. Keep in touch and ask away, Mike Gray Logansport IN julie_macomber wrote: >hi, i'm trying to find out if anyone is out there with PLS or a >family member with it. my mom has just been diagnosed and i'm >interesed in talking to someone. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 My name is Galen, and I have PLS. But I'm working on it, I'm in one of those 12 step programs... >hi, i'm trying to find out if anyone is out there with PLS or a >family member with it. my mom has just been diagnosed and i'm >interesed in talking to someone. Galen Hekhuis NpD, JFR, GWA ghekhuis@... We'll cross that bridge when it rears its ugly head Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 All of us here share this icky disease, but you probably are wondering if it is hereditary. There is little evidence to show that it is but has been known to show up in families on rare occasions. Levy is as good one to talk to. He's a veteran PLSer and is on this network if you want to address your concerns to him, I'm sure he'll answer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Hi : Glad you found this site, ask any questions about your Mom's PLS and your bound to get a lot of info on here. I live in Ottawa, Canada (we've got bitter cold here this morning, -40C with the windchill!) I was diagnosed with PLS about 5 yrs. ago. Take care. Jen -- my mom has pls hi, i'm trying to find out if anyone is out there with PLS or a family member with it. my mom has just been diagnosed and i'm interesed in talking to someone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 --- hi galen, thanks for writing, what is the 12 step program? is this some preventative exercise? thanks In PLS-FRIENDS , Galen Hekhuis <ghekhuis@e...> wrote: > My name is Galen, and I have PLS. But I'm working on it, I'm in one of > those 12 step programs... > > > > >hi, i'm trying to find out if anyone is out there with PLS or a > >family member with it. my mom has just been diagnosed and i'm > >interesed in talking to someone. > > Galen Hekhuis NpD, JFR, GWA ghekhuis@e... > We'll cross that bridge when it rears its ugly head Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 --- hi, thanks all for such a warm welcome and for the websites to be acquainted with. this disease is much less daunting when you're not alone. i have a few questions. my mom was diangosed a few weeks ago, and now that she knows she's thinking she's had it for about 5 years now. as it seems from you all, most people's progression is different, is there anything she should expect in the next 5 years? does everyone end up in a wheelchair. how long does that usually take? does this ever effect one's speech or thought process? is this something we're born with or just develop over time? i'm in boston, is anyone else? thanks everyone. julie In PLS-FRIENDS , Mike Gray <magray@c...> wrote: > , > > This is the right group to come to for the information you are seeking. > You will be hearing a lot about PLS plus 2 websites you can visit to > learn more. EVERYONE on this site has PLS or is a caregiver for someone > who does. So, ask away. We are more than willing to share and give you > answers to questions you may have. I do want to emphasize that everyone > with PLS has a different course of progress. Some of progress slowly and > some more rapidly. It is not life threatening, but it is definitely a > changer of living. Feel free to write me personally at the email address > that comes with this, or just write to the whole group. You will be > receiving many responses before the day is over. All will be positive > and welcoming. You are among friends here. > > Keep in touch and ask away, > Mike Gray Logansport IN > > julie_macomber wrote: > > >hi, i'm trying to find out if anyone is out there with PLS or a > >family member with it. my mom has just been diagnosed and i'm > >interesed in talking to someone. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 No, unfortunately they don't know what causes it, they don't know how to cure it, and they don't know what do for it -- mainly it's a case of whatever works for you. The 12 step program is kind of wistful, in that if I could take 12 steps... >--- hi galen, >thanks for writing, what is the 12 step program? is this some >preventative exercise? >thanks > Galen Hekhuis NpD, JFR, GWA ghekhuis@... We'll cross that bridge when it rears its ugly head Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 >--- hi, thanks all for such a warm welcome and for the websites to be >acquainted with. this disease is much less daunting when you're not >alone. i have a few questions. my mom was diangosed a few weeks ago, >and now that she knows she's thinking she's had it for about 5 years >now. as it seems from you all, most people's progression is >different, is there anything she should expect in the next 5 years? >does everyone end up in a wheelchair. I'm in a kayak most of the time. >how long does that usually >take? To get in a kayak? Dunno, never timed it. Doesn't take much time though. >does this ever effect one's speech or thought process? Don't know that anyone would notice a decline in my thought process. My speech has gone downhill in the past couple of years, though. Even if I order by the numbers, a drive up window is sort of pot luck for me. Although I have some " business " cards printed up that explain I can't talk too well, mostly I just avoid talking to folks. It's pretty much OK except for the people who look at me all stink faced when they say " Hi " and I don't say anything back. > is this >something we're born with or just develop over time? It's probably because we have turned our backs on the One True Zeus. >i'm in boston, is anyone else? >thanks everyone. >julie Galen Hekhuis NpD, JFR, GWA ghekhuis@... We'll cross that bridge when it rears its ugly head Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 --- I have had pls for 18 years and finally got diagnosed 3 years ago. My legs are the only thing affected. In the past three years I have gone from no cane to a cane and now I use my cane just around the house and out if I have someone to hang onto. I got a 4 wheeled walker a few months ago that I use if I have to go somewhere by myself. Everyone is different.Their is no way of telling how you will be in 5 years.They don't know for sure if it is inherited or not.I do also rent a wheelchair if I go traveling so I don't have to walk the airports. Their is no way to tell if it will go beyond the legs.It doesn't always start in the legs either. My neuro told me when he diagnosed me that I could stay the same or it could get worse. I do know that what I have heard it is a slow growing disease. I assume evenually you do end up in a wheelchair, but who knows. My hope is a cure. Keep asking us questions, because we all have good advice here. Carolyn In PLS-FRIENDS , " julie_macomber <julie_macomber@y...> " <julie_macomber@y...> wrote: > --- hi, thanks all for such a warm welcome and for the websites to be > acquainted with. this disease is much less daunting when you're not > alone. i have a few questions. my mom was diangosed a few weeks ago, > and now that she knows she's thinking she's had it for about 5 years > now. as it seems from you all, most people's progression is > different, is there anything she should expect in the next 5 years? > does everyone end up in a wheelchair. how long does that usually > take? does this ever effect one's speech or thought process? is this > something we're born with or just develop over time? > > i'm in boston, is anyone else? > > thanks everyone. > julie > > > In PLS-FRIENDS , Mike Gray <magray@c...> wrote: > > , > > > > This is the right group to come to for the information you are > seeking. > > You will be hearing a lot about PLS plus 2 websites you can visit > to > > learn more. EVERYONE on this site has PLS or is a caregiver for > someone > > who does. So, ask away. We are more than willing to share and give > you > > answers to questions you may have. I do want to emphasize that > everyone > > with PLS has a different course of progress. Some of progress > slowly and > > some more rapidly. It is not life threatening, but it is definitely > a > > changer of living. Feel free to write me personally at the email > address > > that comes with this, or just write to the whole group. You will be > > receiving many responses before the day is over. All will be > positive > > and welcoming. You are among friends here. > > > > Keep in touch and ask away, > > Mike Gray Logansport IN > > > > julie_macomber wrote: > > > > >hi, i'm trying to find out if anyone is out there with PLS or a > > >family member with it. my mom has just been diagnosed and i'm > > >interesed in talking to someone. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 Juli, My symptoms really started over 13 years ago but I didn't know it. I have a wheelchair for long outings but seldom use it. I am determined to remain mobile as long as I can and use my 3 wheeled walker. At first, when my balance was the issue, I used a cane then it just wasn't doing the job. I had a therapist do a partial Zero Balance manipulation on my back a year or so ago and my feeling of falling has really diminished. I'm one of the lucky ones whose progress seems to be slow. I had a good bit of slurring of speech and now that we've retired, it seems better. It still gets bad when I'm very tired or get emotional. My neurologist said PLS doesn't affect your mental process, thankfully. Like Jagan, there's always been some questions there!! Your Mom is still who she always was and just needs you to be there and not to agonize too much. Let her " do it herself " for as long as she can. Peace and Blessings, Vivian in land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 Galen: Oh how I can relate to this except I find a great many people seem to find that " my thought process " has gone along with my speech, quite frustrating at times. Jen L. >Don't know that anyone would notice a decline in my thought process. My speech has gone downhill in the past couple of years, though. Even if I order by the numbers, a drive up window is sort of pot luck for me. Although I have some " business " cards printed up that explain I can't talk too well, mostly I just avoid talking to folks. It's pretty much OK except for the people who look at me all stink faced when they say " Hi " and I don't say anything back. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.