karenaustralia

oh karen i hope your appointment goes well and you find a caring nurologist.my prayers will go out for you .take care let me know how it went your friend jeff

hi karen god bless you .and may god keep on holding your family close

Hi, Karen, I'll stay with my daughter in Armadale. She and her husband and two daughter aged 17 and 18 will give me great support. My son in NZ is arranging to get me over for a holiday, so I do hope nothing progresses too fast - if I have something progressive. I can't walk very far because of my weak feet. I keep hoping the pains, numbness and weakness appearing in my left arm are just a coincidence, Carrying too much shopping maybe and strained it. Who knows? What about you? Are you very much handicapped at this stage? Love and hugs, Morningdew

Hi,Karen, it's so great that your family are so loving. I have a son in new Zealand, one near me here who is on disability for anxiety, and my so loving daughter in Perth who I know would want to care for me but is in a very exciting part of her career just now (she's a teacher and has been helping to write this new national curriculum). When I had to tell me husband that I was under investigation for MND (early April) he had just come back from visiting a friend over east who was in the end stage and actually died peacefully while he was there. He said nothing and hasn't given me so much as a hug since. Oh, well, I'm pretty tough and have others who love me. Hugs, Morningdew

Hi, Karen,
Thank you so much for your lovely encouraging letter. You are the same age as my daughter. I just can't believe this could be happening to you. Much of my fear is the effect on my family. They would want to look after me, they're so loving, but they have their own lives to take care of! I remarried last year, but it was largely for convenience, two old people thinking it would be a good idea to live together, and I couldn't expect that kind of care from him. It would be kindest to leave him. he isn't the carer kind of person. I accept that. here are lots of warm fuzzies in return! Thinking of you, Morningdew

Hi, Karen, I hope to be a private patient, but I only joined the fund last October and have to have my doctor tell them it's not pre-existing (or wait till a year is up!). I haven't had it confirmed yet. But something that's not diagnosed can hardly be pre-existing, I tell myself. What age group are you in? I'm quite old now, 75. I'm so sorry for younger people who are diagnosed! At least I've had a long life! Love, Morningdew (yes, Morningdew is nicer than Joan and makes me feel there is a bright morning ahead.)

hi karen im so glad to hear the closeness of your family .to laugh together to cry together that is a true family to me keep the faith and i hope today brings you all a better day your friend jeff

I had to half my message - makes it rather stilted. Is it possible to do longer messages?
Joan

Hi, Karen,
I'm so sorry about your diagnosis. However, this forum seems to be really inspiring and helpful, and gives one hope of being able to face the future. I started having desperately bad cramps in my legs about a year ago. In February my feet became very weak and didn't want to hold me up. Soon after I began feeling the twitches. I only felt them at first, then saw them all over the soles of my feet. The doctor gave me a neurological examination an immediately made an appointment for me to go to Joondalup under Dr Panegyres, but I have to wait until 27 June. The twitches have become stronger, but strangely I don't see them very easily - they have eased off on my feet. I worry about my left arm now. I'm reluctant to pick up a pan, for example, with it. However, it hurts as if strained. The cramps are everywhere now . Did you get any results in Hospital, like EMG? Love, Joan

Hi Karen, well first off Nuvigil is new in our market, so it may not be in your yet. If it isnt the med that is closely related to it is called Provigil. That has been on the market worldwide for a long time. They have almost the same ingredients, only Nuvigil acts longer though out the day. I am going to start a thread about it finally tonight. You know about that saying you said, my mom always told me that God never gives us more than we can handle...Well, I thought about that when I went fruit loops for 2 years, and if that were the case, we would not have any mental institutions out there right!! I think we all have out limits. Let me know if you get to try the medication. It may give you some of your life back. It it does not work, then get the dose upped by the doctor. Post some more on the threads. Once you get to 20, you will be able to do private messages. I cant wait to blab with ya! Hugs Kari

Greetings to you, Karen! I'm sorry to learn about your diagnosis but am glad you found this forum. I have a ddx of PLS which is currently under the microscope of a neurologist that is new to me. My last one retired and the new guy is sceptical of the previous neuro's call regarding my condition. So, for now, I'm still calling it PLS. I tune pianos for a living and despite constant cramps, am very functional.

Hello Karen,

What a coincidence that our messages to Barry about putting pins on his map are side by side! I too am in Western Australia. I was in Perth (Kelmscott most recently) until last October, when I moved to Boyup Brook. I am a retired teacher.
I am going into Joondalup Hospital for EMG etc on 27 June. Is your neurologist Dr Panegyres? I haven't seen him yet because it was thought I should have the tests as soon as possible and going as an in-patient was the quickest way. I've still had to wait 3 months though.
Hope to hear from you.
Joan

continuation... My mom was diagnosed with ALS Sept 2009. Who in your family has ALS? There's no one at home that I can talk to about my mom or my pain. My older son (21 yrs old) is in denial and my younger son (10 yrs old) is too young for me to just sit down with. My husband doesn't want to talk about it at all (he and I have a cruddy marriage by the way). My dad has asked that I not talk with my mom about it, so I'm lost. I can actually feel myself diving in to another depression, I hope it doesn't last long.
Anyway, thank you so much for your message. I really appreciate it. Let me hear from you soon. Love and hugs, Linda

Hello Karen! How wonderful to hear from you. I take it from you sign on name that your from Australia? How exciting!! I've always wanted to go there but have never had the opportunity. Yes, I suffer a great deal from depression. I've been in the mental hospital multiple times due to breakdowns. I've had 13 ECT's and am on a bunch of meds. I also go to a counselor every couple of weeks. Do you take meds for yours? I am sorry you have had to fight depression, too. I know it's tough with one kid on your own (that's what I did) but I can't imagine doing two. You are a true trooper. see next post...

Hi karen. I am well as can be expected. Tell me about the rolling in bed. It is the pits. I have to shuffle around like any thing and if the dooner or sheets are too tight then it is almost impossible to roll over.
The sun has been out here too which is good. Mornings are chilly though.
cheers and we will keep in touch.
Peter