Primary Lateral Sclerosis Sufferer From Australia

Hi everyone.  I was diagnosed with pls 4 years ago.  I'm now 43.  I ve always been a good second generation italian catholic boy.  Never smoked, did drugs, i don't drink and never fooled around.  Damm i wish i had my time back again knowing what i know now. LOL.  How the hell did i get pls?  Never seen the inside of a hospital. Thats what makes it so frustrating.  Why?  Thank god i'm single right now because it can be very hard for a partner to live with a person with pls.  I can walk unaided but i notice i shuffle alot when i walk and have stumbled several times. At times i find it hard too raise my legs and getting started in the morning can be a bit of an ordeal .  I'm constantly exercising , walking, stretching and doing small weight lifting routines to hopefully increase my strength and better counteract this terrible illness.  My balance is poor and my sppech is ordinary.  I slur alot and i am very nasally.  My legs around the knee joints are sore but i'm keeping positive.  My family and friends are fantastic . My parents are both from Italy so as you can imagine family means everything to me.  We are very close .  i really sympathise with people who are alone and battling pls.  I'm still working 3 days a week.  Down from five days a week.  My workmates are so understanding and they often joke about me having a few drinks before coming too work because i sound like a drunken sailor at times.  LOL.  I've learned over time that its best to adopt a humourous approach too our illness. It just puts everyone at ease i think.  I will often joke about my speech problems by saying that i think my days of becoming a newsreader are over.  Its the aussie way too poke fun at yourself.  No tall poppies here.  I'd love too hear from fellow pls sufferer.  Please people remember, it could be alot worse.

viewbank viewbank
41-45, M
7 Responses Mar 15, 2010

I am in aust and not officially diagnosed-yet. Previous neurologists have said what I have is psychosomatic. I am in country NSW where are you? Is there a PLS group in aust

I have had PLS for at least 3-5 years . I am now 60 . Do you feel any changes in your tongue or hands ? I am experiencing this. , and it worries me , I currently use walker or partners arm to assist in walking . I also take Baclofen . Not really sure if it helps I used to run ever day . It slowly started showing up for at least 7 years . I would be running, and my right foot would just drop . This would happen like twice a year until a few years ago until it was more significant falling , I try to walk unassisted , but fall constantly . Have had broken ribs, toes, fingers . I can not stand the thought of not using my whole body . Did Yoga , Pilates , spin , ran , rowed , it's so hard to have my body control me , not like I used to control my body ! Very depressing ! I keep hoping the changes stop. , but... No they haven't. . Just like that someone else gets it . Do anyone's children experience this also ? Please respond , if you can help ! Thanks PS I'm actually getting ready to try Botox injections in my ankles. I feel if I loosen the ankle tendons, it might help the movement in legs , Botox Dr said might help balance . Very ready to try anything !

I was diagnosed last summer although I have fallen in the past few years and been stiff upon rising so maybe I've had it a while longer. I'm 63, married and have 2 children. I have had a good life but I want to hold my grandchildren, walk with them, know them. I have constant leg pain and I too excercise all the time and stretch. Every day I think it's just a nightmare and then I try to get out of bed. It's awful. I have to use my hands to move my head, I have to drag myself over and up without falling out of bed and then when I'm standing I have to wait to see which direction I'm going to go, I don't let anyone see this staggering around the room trying to get to the bathroom door. After a while I straighten out and do ok. I'm slow and steps are not my friends but I'm going to fight this as long as I can. I'm so glad to find others with PLS. All I could find is ALS and I don't want to think about that. How are others doing? Take care, Jill in CO and SC

YOUR VERY ENCOURAGING I ALSO HAVE PLS IT IS HARD TO KEEP MOVING AROUND BUT I DO FOR MY SELF MY HUSBAND AND EVERYONE ELSE IN MY LIFE YOUR VERY ENCOURAGING

Hi, I was initially diagnosed with Transverse Myelitis over 8 years ago, but early last year I noticed my speech slowing down. I had a genetic test for Hereditary Spastic paralysis, which revealed it wasn't it, and now my speech is slurring a fair bit as well as having swallowing problems at times, very frustrating, I'm pretty sure that it's PLS as the symptoms are progressing. it's pretty frustrating at times, but I try and stay upbeat as much as I can, by the way I live in Australia..best wishes to you.

Hello from Gorgia,US.I was diagnosed with PLS when I was 34,Im 49 now.I took oral baclofen for 5 years,but started to need so much,it made me sleepy all the time.My doctor recomended I get an implanted pump.I had my first pump almost 10 years,which is the battery life span.Im on my second now. I can still walk,with a walker,becouse of the pump.The pump delivers a liquid baclofen concentrate into my spinelfluid,on a time relese schedule.As long as your still walking on your own,this might not the time for you.You might keep it in mind for futer,ask you neurologest.

Hello:<br />
My husband has PLS. In the 8th year. Now in electric wheelchair and in a hospital bed. He has difficulty speaking. The worst part now is mucus build-up. He has several breathing and cough assist machines. We would love to hear from someone who has had PLS as long as my husband. We live in Oklahoma, USA. He has great upper strenght but cannot walk any longer.

Hello, I'm so sorry to hear about your husband. Sorry for the late reply but i have not been on this site for over a year now. I just got frustrated with my illness and i underwent stem cell treatment on may 15, 2011. Initally it helped, but slowly my condition worsened. I too have the mucus build up , so frustrating trying to speak. I've had my illness now about 6 years. I was first diagnosed at about 39 , i am know 45. I 'm having more difficulty walking, really poor balance and fatigue is a huge problem. My neurologist suggested baclofen tablets to relax my legs and make it easier to loosen them especially in the morning. My morning leg stiffness is horrendous. I am still working 3 days a week, but its becoming an ordeal. I am really hoping stem cell treatments radically improve and help people like me and your husband. I have trouble swallowing too. I take colostrum powder daily
as well which seems to give me more energy. I take it mid afternoon. i try to exercise every day. I have an exercise bike at home which i use every day for 30 minutes to help loosen my legs. I walk around my property here, but i am finding walking a lot harder now. Uneven surfaces when i walk is very dangerous, going down stairs is terrible and any downward slopes when i walk is very hard for me. Thankyou for your message. I hope we can keep in touch. I wish you and your husband all the best, David