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  • Hi, \Karen, I looked down your profile page just now and found two messages that had not appeared on my page, so thank you for them, but that is why you have had no reply.
    My symptoms aren't all that bad. I have orthotics to help my feet, the drop foot in particular, and I can't walk all that far. In the limited walking I do in our tiny town it doesn't show too much. My feet used to be painful, but now it's just the weakness that's bothersome. I'm always draping myself over things, such as the breakfast bar, when standing talking to people. Going to Perth next week for my sister's Golden Wedding. They aren't having much, because David, her husband, has just had a knee replacement and is on crutches, but we're going to eat at the Red Herring. Lovely seafood! yes, I can do private messages. love, Joan
    Hi, Karen, I've been taking a bit of time adjusting my thoughts. I accept that I probably don't have als, but I definitely still have worrying symptoms. I'm managing not to think about them too much, and I don't dwell on my twitches any more. They're just there. I'm a little worried about my voice, hoping it's just in my mind. I'm tripping as I never have before, or not that I noticed. yesterday at a meeting someone finished my sentence for me when I tripped up, and that is certainly a new experience. I think the problem word was "before". How are you managing? Do you manage to get out at all? Do you have a social life? It's so good that you have your Mum to help. Has it been in your family?
    I'm thinking about you, even when I'm silent. Lots of hugs!. Love, Joan
    Hi Karen, it is good to hear from you. So sorry about your speech, it is hard but you can still have a voice. All it takes is practice on your part and patience on the part of the others. I am doing ok, getting more wobbly but ok never the less.
    What did they say was the cause of your drop foot is it very pronounced?? special shoes and splints can help with this but i didnt go with that it was too awkward ... can you post private messages on here yet ? i think you have to reply to 20 threads then you can .. but for now here is my e mail feel free to write as much as you like and yeah i can still type thank goodness .. [email protected] talk soon :) karen x
    HI Joan you sound so much better now ( realistic ) but more at ease ... i am not aware of PLS but will look it up so i know where your at ... i told you your fasmily would be there in every way just like you have always been for them :) can you move your legs etc by yourself ?? i think the psysio is a great idea to keep your muscles working ... mum massages and exercises my legs every day ( LOVE HER !! ) and it has helped heaps Contd
    PS Would it be easier for you to email? Can you still type yourself? We could send private messages with our email addresses.
    Hi, Karen, yes, my family were with me all the way, and my son in New Zealand sent the most beautiful flowers. I'm feeling better mentally, iof course, but I'm well aware it's not the end of the story. The symptoms are too evident. I think I'll make contact with the local physio. it would be good to talk about the actual problems like the dropped foot with someone.
    Do tell me how your own problems are. Hope everything is not too bad. Love, Joan
    Hi Karen,thank you for your message,I have been away for a while.Hope you are doing ok,take care
    Hey Karen!
    I haven't heard from my Aussie connection lately. How are you doing? How are things going? Pretty good on this end of the world.
    Take care and let me hear from you soon.
    Love and hugs!
    Hi, Karen. You may have seen my result on my general thread. No Als, but symptoms there. Come back in six months. So I'm wondering about PLS now. It would probably fit. Anyway, I'm going to try and keep my mind off the whole thing as much as possible. How are you? And your family? It's so good that your Mum is able to help you. This forum is so wonderful, the way people going through the same thing can help each other. I know what you mean about Dr P's bedside manner. He wasn't terribly communicative, though he did point out that even though the emg seemed to be clean, I still had the fasciculations etc. I stayed in bed mainly in the hospital, and I'm now oh so stiff, especially my back! But it's what they seemed to expect. Love and hugs, Joan
    Hello, Karen. Thank you so much for all the so-helpful information. I'd love to have your number. It would be a good opportunity to ring you when I'm in hospital. I'll be known in the hospital as Joan Calley. My local doctor confirmed this morning that my left arm has become neurologically weak, so whatever it is it's moving. I feel my right arm is beginning too, and I can't walk all that far. I've just acquired an ACROD permit, which is good. Hugs from me and big licks from my two dogs, Gemma the flat-coated retriever and Shaye the miniature poodle.
    Hi, Karen, Thanks for all your warm fuzzies and your reassurance about the hospital. I've been told nothing about what to take, and am wondering if you're expected to stay in pyjamas/dressinggown even though you're just in for tests. How are you yourself? How do you pass your time? Love, Joan
    Hello, Karen, I'm just back from a few days in Perth with my family, making myself useful chauffeuring grandchildren around. Only about a week to go now till Joondalup. They haven't given me any idea what to expect or what to take. I hope you like your new neurologist and can get lots of help. Hugs Joan
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