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  • Hello my dear
    my name is lussy i was browsing today, so i came across your profile on it seams like some thing touched me, i started having some feelings in me which i have never experience in my life before, that is why i write to you, i will also like to know you the more, and i want you to send an email to my email address so i can give you my picture for you to know whom i am.Here is my email address ([email protected])I believe we can move from here! Remember the distance or color does not matter but love matters a lot in life) Am waiting for your immediate response i love you with faith and trust. Miss lussy. you can send me your email also pls
    Hello eveyone. I really could use your help and advice. We live in California and my wife was diagnosed in Jan with ALS. We are presently using COBRA insurance that will expire in Oct. We are applying for Medi-cal and we could use some real help working the system. Our medical team does not accept Medi-cal, and they told me this morning we would have to switch all the medical doctors if we want to utilize Medi-cal. Obviously that was not the answer we were looking for..If you have worked with Medi-cal we sure could use your advice on using the system but retaining our same doctors. Medi-cal was short and rude this morning offering no real advice , just the usual B.S. How can we work the system to where we can remain with the same medical team. I am so frustated, but I guess I need to get use to it..Any suggestions and advice regarding this would be really appreciated! Hope to hear from you all soon! God bless everyone!

    Andy & Cynthia
    Just checking in with you Andy....How are you doing? ( I really want to know!)

    I got kind of lost in keeping tract of who has finished their letters. So will you fill me in?
    If you have finished please send me a copy of the letter, ok?

    Also I am reaching out to people who have wanted to help us in other ways.
    Do you have a couple of hours a week you can volunteer with us?
    We have so much to do and few people to do it.
    But I understand if it is too much. We all have full plates these days.
    Love and ((hugs))
    sharon

    you can email me at: [email protected] (middle initial is L)
    Andy, are you still interested in writing a letter to your local ALSA? I'm not sure if you emailed us or not, because Ed gets the emails...just checking on you. Hope you are doing well
    Hello, welcome to the forum! I am on the steering committee of ALS-Treat Us Now...thanks for offering to write a letter to your local ALSA...please email me ( Sharon C) at [email protected] and I will send you the drafts. Thanks alot!
    Hi! Just stopping by to say hello and see how you guys are faring. Did you check out a new Doc? How about the Clinical Trials? Anything look promising in your area?
    Take care, Deb
    HI friends..I have been encouraged about what I read about lithium and its benefit possibly for als. I really would love some feedback from anyone with knowledge of any benefits..have you or do you know anyone that is taking it and what their reactions and opinions are about any benefits..Thank you so much1
    Hi ANdy and welcome to the Forum. I sent you an email about Pilot 1. There is plenty of room for more folks because some dropped out. ((HUGs))
    My local neuro is not experienced with ALS and unfortunately our local Medical community is not well respected. I like the "one stop shopping" that the Clinic provides. I wait comfortably in one room and the various disciplines come to me rather than having to schedule different appointments with various providers(RT, PT, OT, Speech, dietitian, ALSA rep and Social worker) It is a long day and I'm "wiped out" afterwards.
    I think that bedside manner and an open and frank dialogue with your provider are extremely important and your wife should be followed by someone that you both are comfortable with. If I didn't feel confident with my Doc I would go somewhere else.
    We have several members from CA that post regularly on the forum. I'm sure any of them would be more than happy to share their experiences with their particular Clinics. You might try a search for "Clinics" or "ALS Clinic" to read some other discussions.
    Good luck, Deb
    Hey,
    I believe one of our members, Sequoia, is seen in one ALS Clinic and goes to another in Fresno where she is participating in the Dexi Trial. I'm sure she would be willing to share her experience with you. I had my first EMG with my local Neuro and went to Mayo Clinic in Jacksonville, FL for my 2nd opinion ( 3 hours away and another EMG) I decided to be followed at MCG (my NSG school, class of '76) which is 2 hours North of us. He required a 3rd EMG to make sure I had a correct ALS diagnosis. I'm also enrolled in the Ceftrianone Clinical Trial through my MCG Clinic.
    Thanks Deb for that information, we will certainly check that out. My wife has read many of your posts and says your are the hardest worker on the forum so keep the info coming! Any thoughts about many of the possible benefits of lithium? Thanks, Andy
    Hi Andy, Just wanted to let you know that there's a link in the Research News section of the forum for the NEALS website that was recently launched. It contains information about current Clinical Trials and where they are located. They also offer an interactive service with a Clinical Trial Expert so that you can ask questions. The CDC also has info on their site but maneuvering about in it can be a bit daunting. Has your wife registered with the CDC yet? She should also be registered with your local MDA and ALSA. They will send you contact info and printed materials that can be very helpful to the caregiver as the ALS progresses. Your ALS Clinic should be able to tell you about any Clinical Trials that they're offering.
    Best of luck, Deb
    Hi Andy,
    I wish you and you family all the best while going through this.
    My wife and I find this forum to be full of experienced and helpful people.
    Stay strong, and positive.
    Cheers,
    Casey
    Andy
    Saw your post. So sorry you have to be here. I understand what you are going through. My wife was dx Sept 2007. I love her dearly and cherish every moment with her. I remeber those early days after the dx. They are tough. Hang in there. She is going to need you.

    Jim
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