Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 , I add my welcome along with the others. Please check out this database to see if anyone who has registered on this database lives close to your niece. _http://www.geocities.com/freyerse/world.html#AS_ (http://www.geocities.com/freyerse/world.html#AS) Everyone of us progress differently. The average age for onset is around 50 but it does seem that more of our newcomers to this List have younger onset. I personally began having symptoms around age 49 but that's when they were noticeable enough to go to my first neurologist so probably had I been more aware they began earlier. My first symptoms were slow and slurred speech -- like too much wine. In fact, in the beginning, people did think perhaps I was drinking a bit too much. They didn't know me well enough to know that I rarely drank. Does your niece have speech, choking or swallowing problems? I do not experience pain for which I am thankful. I do take it easy. I have a walker (rollator) for outside the house for shopping and volunteering at the hospital and a power chair for long excursions. I'm on the computer a lot so I have a laptop that I use in my recliner because if I sit at the desktop computer for too long, my back and neck will hurt, so I try and take it as easy as possible. We have a newsletter called Synapse. You'll find it most interesting.... _http://www.synapsepls.org/_ (http://www.synapsepls.org/) Our SPF website gives tons of information; you'll find it here: _www.sp-foundation.org_ (http://www.sp-foundation.org) Again, welcome to our world. Please send my your niece's (and yours too) information so I can add you both into our data base. Send it my personal email address. We have a database that we are expanding and there is a space for name, address, telephone numbers, age, gender, disorder and lots of other areas but this is what we're trying to get for now. Gentner sp-foundation VP _lkgentner@..._ (mailto:lkgentner@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 there are some youngerish folks here on the group.......sometimes it might change life expectancy a bit for those that are young but generally speaking it doesn't. have seen research that says avg survival is 20 years so that will put me at 52 and i don't expect to be done then anymore than i am done now!!! i was 32 and there are some 40ish online. can she go to your doc? does yours know more about pls than hers? i am sad for her, but hope that she can also get involved here so that she can see the darkness and shock will soon fade and that we get on about the business of living with whatever abilities we may have left at the time!!! sad for you too....am so sorry this had to be for someone you love so much. tawny email from Tawny H. Swain Castle, MA My dear niece My 42 year old niece has just been diagnosed with PLS. Neither her neuro nor her G.P. seem to know a lot about it. They paint a very grim picture for her life expectancy, yet so many of the websites I look at state that PLS is not fatal. Can anyone clear this up for me. Also, is there anyone (youngish) in Australia as a member of this group? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Hi , Unfortunately PLS is very rare - supposedly only 30 to 50 cases in Australia but I suspect that figure is a little low. My original neuro knew so little (he had only ever seen one PLSer before when he was training in London some 20 years earlier) that I assume he had to look up info. He told me I would probably be in a wheelchair in 12 months. That was in 1993 and I still only use one occasionally eg. anywhere involving walking (with my walking frame) more than 100m or where going as slow as I do will be a problem, in crowds where I am likely to be even slightly bumped (splat!!) or on uneven ground. I guess in a way I have modified what I do to minimise putting myself in those situations but that hasn't stopped me doing things I like. Most importantly you need to help her to eat healthily, avoid stress and start on a regimen of a good range of antioxidants. Initially I progressed relatively rapidly for 5 years before starting diligently and consistently on a range of antioxidants (some of which I have to get from the US as they are either not available here or too expensive here) and within 6 months my progression virtually stopped and has been very slow ever since (8 years!). If only I had started on them earlier I would still possibly be walking without needing a frame and my speech would still be able to be understood. On the other hand I hate to think where I would have been without them, although I seriously doubt the 20 year figure I have sometimes seen quoted for PLS. I think the best way to look at it is PLS is life-altering, not life threatening. My second neuro was a St (Melbourne) specialist meaning he was supposedly creme de la creme, but when I first mentioned antioxidants to him he scoffed at them saying I may as well eat jam! (jelly to the Americans). If only he hadn't long retired now I'd like to go and ......... (imagination required! :-) ) Basically I think her neuro and GP have painted a grim picture through ignorance and unfortunately depending on where in Oz you are you are unlikely to find anyone better given the rarity of PLS. Your best bet by far is to stick with this group as even neuros and GPs with some PLS experience get it wrong, I suspect because their reference books are wrong. There are several issues on which people on here have been told " that particular symptom is not due to PLS " because that's what it says in textbooks but when the question has been asked on here many of us have that particular thing (e.g. urinary urgency or fasciculations). Fasciculations according to many textbooks are indicative of ALS rather than PLS, so many PLSers have come away from neuro appointments scared $hitless that because they have fasciculations they therefore have ALS - probably not true at all! The other thing for her to definitely do is get onto LDN (low dose naltrexone), a harmless and cheap drug many people are now using for PLS, MS and even ALS etc with very good results - significant slowing of progression and in some cases even improvement!! See www.lowdosenaltrexone.org (not .com!!) and email me direct if you like with any LDN questions. Hmmm, what's your definition of youngish? :-) I was only 38 when diagnosed and now 51. Is that too old? :-) Realistically there are only two Aussies on here who ever post now unless I'm mistaken, myself and Maureen in Sydney but after about 10 years she unfortunately still has no diagnosis. If you are lucky there may be a young Aussie lurker who never posts and may email you direct, although I wouldn't hold my breath. marlene wrote: >My 42 year old niece has just been diagnosed with PLS. Neither her >neuro nor her G.P. seem to know a lot about it. They paint a very >grim picture for her life expectancy, yet so many of the websites I >look at state that PLS is not fatal. Can anyone clear this up for me. > >Also, is there anyone (youngish) in Australia as a member of this >group? > > > > -- Every day I beat my own previous record for number of consecutive days I've stayed alive. . ,-._|\ C / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 When I was writing the " PLS NEWSLETTER " I kept a record of PLS-people's age at death and the average was in the 70's. In my opinion PLS is not a fatal disease. PLS-people die of something else. Levy, Ph.D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 , I found this site to have a good explanation of PLS. You might share this with her doctors. Packard Center for ALS Research at s Hopkins http://www.alscenter.org/about_pls/> About PLS - What is it? How Does PLS Differ From ALS in Appearance? How common is PLS? Lynn http://spoilingaunty.tripod.com http://http://spoilingaunty.tripod.com> My dear niece My 42 year old niece has just been diagnosed with PLS. Neither her neuro nor her G.P. seem to know a lot about it. They paint a very grim picture for her life expectancy, yet so many of the websites I look at state that PLS is not fatal. Can anyone clear this up for me. Also, is there anyone (youngish) in Australia as a member of this group? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 , I don't know where they got that idea about PLS. You don't die from it. It does alter alot of things you were able to do before. Everyone progresses at different speeds. I started having symptoms at age 30, I am now 52. I have been very lucky as it has just been in my legs. It took 15 years to get a diagnosis for me. At 45 I started using a cane, and 2 years ago I started using a walker. I use my electric chair on outings that I feel would be to far to walk. It seems that PLS is getting diagnosed earlier these days. When I got mine I was so relieved to finally know what I had. Tell her to stick with us and we will answer any questions she has. Carolyn > > there are some youngerish folks here on the group.......sometimes it might change life expectancy a bit for those that are young but generally speaking it doesn't. have seen research that says avg survival is 20 years so that will put me at 52 and i don't expect to be done then anymore than i am done now!!! i was 32 and there are some 40ish online. can she go to your doc? does yours know more about pls than hers? i am sad for her, but hope that she can also get involved here so that she can see the darkness and shock will soon fade and that we get on about the business of living with whatever abilities we may have left at the time!!! sad for you too....am so sorry this had to be for someone you love so much. > tawny > > email from > Tawny H. Swain Castle, MA > > > > My dear niece > > > My 42 year old niece has just been diagnosed with PLS. Neither her > neuro nor her G.P. seem to know a lot about it. They paint a very > grim picture for her life expectancy, yet so many of the websites I > look at state that PLS is not fatal. Can anyone clear this up for me. > > Also, is there anyone (youngish) in Australia as a member of this > group? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Hi , I am in Sydney and will be turning 49 in a couple of days. As wrote I have had my symptoms for over 11 years now, maybe even longer and dont have a confirmed dx yet. My latest neuro is trying to decide between HSP and PLS but is leaning more towards PLS. A couple of neurologists have mentioned PLS to me and only one has scared the living daylights out of me and I put that down to ignorance of the disease. I decided to never see him again. I am currently seeing Dr Kiernan at the Sydney MND clinic and he is wonderful. If you are in Sydney, I would suggest seeing him and if not you need to see someone who specialises in the MND field. Everyone progresses differently with PLS. Some unfortunately do progress quickly but many dont and remain stable for a long time. I am one of those people (touch wood) I have remained stable for the past 6 years. I have to use a walker outside the home because of balance and falling so easily. My speech is slighty affected. But I am doing good and I still drive. Also there is Rita here who has had PLS for over 30 years and she is still driving and doing well. When I first heard the words or should i say the letters PLS I was terrified! It wasnt until I came hear that I realised I didnt have to be terrified and I settled down alot. There are wonderful people here who will help your neice much more than the doctors can. I would be happy to converse with your neice privately (thats if you think I am young enough. haha) Just click on my email address to the right mazzie20022000@... Aussie Maureen > > My 42 year old niece has just been diagnosed with PLS. Neither her > neuro nor her G.P. seem to know a lot about it. They paint a very > grim picture for her life expectancy, yet so many of the websites I > look at state that PLS is not fatal. Can anyone clear this up for me. > > Also, is there anyone (youngish) in Australia as a member of this > group? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 This is one of the reasons why I feel someone like Dr. Fink should offer training to Neurologists across america and the world. All of these neuros need to start getting on the same page. Trauma to a patient is dangerous to their health and mental state. Re: My dear niece To: PLS-FRIENDS > Hi , > > Unfortunately PLS is very rare - supposedly only 30 to 50 cases in > Australia but I suspect that figure is a little low. My original > neuro > knew so little (he had only ever seen one PLSer before when he was > training in London some 20 years earlier) that I assume he had to > look > up info. He told me I would probably be in a wheelchair in 12 > months. > That was in 1993 and I still only use one occasionally eg. > anywhere > involving walking (with my walking frame) more than 100m or where > going > as slow as I do will be a problem, in crowds where I am likely to > be > even slightly bumped (splat!!) or on uneven ground. I guess in a > way I > have modified what I do to minimise putting myself in those > situations > but that hasn't stopped me doing things I like. > > Most importantly you need to help her to eat healthily, avoid > stress and > start on a regimen of a good range of antioxidants. Initially I > progressed relatively rapidly for 5 years before starting > diligently and > consistently on a range of antioxidants (some of which I have to > get > from the US as they are either not available here or too expensive > here) > and within 6 months my progression virtually stopped and has been > very > slow ever since (8 years!). If only I had started on them earlier > I > would still possibly be walking without needing a frame and my > speech > would still be able to be understood. On the other hand I hate to > think > where I would have been without them, although I seriously doubt > the 20 > year figure I have sometimes seen quoted for PLS. I think the > best way > to look at it is PLS is life-altering, not life threatening. > > My second neuro was a St (Melbourne) specialist meaning he > was > supposedly creme de la creme, but when I first mentioned > antioxidants to > him he scoffed at them saying I may as well eat jam! (jelly to > the > Americans). If only he hadn't long retired now I'd like to go and > ........ (imagination required! :-) ) > > Basically I think her neuro and GP have painted a grim picture > through > ignorance and unfortunately depending on where in Oz you are you > are > unlikely to find anyone better given the rarity of PLS. Your best > bet > by far is to stick with this group as even neuros and GPs with > some PLS > experience get it wrong, I suspect because their reference books > are > wrong. There are several issues on which people on here have been > told > " that particular symptom is not due to PLS " because that's what it > says > in textbooks but when the question has been asked on here many of > us > have that particular thing (e.g. urinary urgency or > fasciculations). > Fasciculations according to many textbooks are indicative of ALS > rather > than PLS, so many PLSers have come away from neuro appointments > scared > $hitless that because they have fasciculations they therefore have > ALS - > probably not true at all! > > The other thing for her to definitely do is get onto LDN (low dose > naltrexone), a harmless and cheap drug many people are now using > for > PLS, MS and even ALS etc with very good results - significant > slowing of > progression and in some cases even improvement!! See > www.lowdosenaltrexone.org (not .com!!) and email me direct if you > like > with any LDN questions. > > Hmmm, what's your definition of youngish? :-) I was only 38 > when > diagnosed and now 51. Is that too old? :-) > > Realistically there are only two Aussies on here who ever post now > unless I'm mistaken, myself and Maureen in Sydney but after about > 10 > years she unfortunately still has no diagnosis. If you are lucky > there > may be a young Aussie lurker who never posts and may email you > direct, > although I wouldn't hold my breath. > > > > marlene wrote: > > >My 42 year old niece has just been diagnosed with PLS. Neither > her > >neuro nor her G.P. seem to know a lot about it. They paint a > very > >grim picture for her life expectancy, yet so many of the websites > I > >look at state that PLS is not fatal. Can anyone clear this up > for me. > > > >Also, is there anyone (youngish) in Australia as a member of this > >group? > > > > > > > > > -- > > > Every day I beat my own previous record for number of consecutive > days I've stayed alive. > . > ,-._|\ C > / Oz \ > \_,--.x/ > v > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 A couple of years ago, I read that the average life expectancy in australia for a man is 74 and for a woman is 78. With the PLSers, who died in their 70's it was most probably their time or they did die of something else. I am convinced also that PLS is not a fatal disease. Aussie Maureen > > When I was writing the " PLS NEWSLETTER " I kept a record of > PLS-people's age at death and the average was in the 70's. In my opinion PLS is not a > fatal disease. PLS-people die of something else. > > Levy, Ph.D. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 YOU are exactly right Bart when you write about trauma being detrimental to our health. All my neurologists bar 1 have adopted the wait and see approach and I believe thats why i have remained stable. Aussie Maureen > > > > >My 42 year old niece has just been diagnosed with PLS. Neither > > her > > >neuro nor her G.P. seem to know a lot about it. They paint a > > very > > >grim picture for her life expectancy, yet so many of the websites > > I > > >look at state that PLS is not fatal. Can anyone clear this up > > for me. > > > > > >Also, is there anyone (youngish) in Australia as a member of this > > >group? > > > > > > > > > > > > > > -- > > > > > > Every day I beat my own previous record for number of consecutive > > days I've stayed alive. > > . > > ,-._|\ C > > / Oz \ > > \_,--.x/ > > v > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 By the way , you will find that G.P.'s in particular know absolutely nothing about PLS and will associate it with ALS/MND. Aussie Maureen > > > > > > >My 42 year old niece has just been diagnosed with PLS. Neither > > > her > > > >neuro nor her G.P. seem to know a lot about it. They paint a > > > very > > > >grim picture for her life expectancy, yet so many of the websites > > > I > > > >look at state that PLS is not fatal. Can anyone clear this up > > > for me. > > > > > > > >Also, is there anyone (youngish) in Australia as a member of this > > > >group? > > > > > > > > > > > > > > > > > > > -- > > > > > > > > > Every day I beat my own previous record for number of consecutive > > > days I've stayed alive. > > > . > > > ,-._|\ C > > > / Oz \ > > > \_,--.x/ > > > v > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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