Jeanau
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  • One of things I wanted to let you know about is the advanced illness services through my dad's insurance company was very informative and helpful. If you have the same company I could give you the name of who we had . . She always made me feel better. Also I have a piece of equipment I can give you if you're interested. Lori
    Audrey,
    I'm from the Pittsburgh area too. My dad passed from ALS last year . . he was diagnosed by Dr. Lacomis at UPMC. (I work in RIDC Park.) Being new to the forum I don't yet have the selection to private message (my username doesn't even show up on the Member List), but I would like to ask you something. Not sure if you reply to my message maybe we can exchange emails -- Lori
    Saw your post today in PALS thread, so just want you to know I'm keeping you in thought and prayer, lovely Audrey. Wishing you a rainbow in your cloudy day and that you'll feel the sun on your shoulders again soon. --Cindy
    Dear Audrey, I just wanted to let you know that I am thinking of you. You are in my prayers. God Bless You, Audrey. Always, Laura.
    Dear Audrey, thank you so much for being my friend. I hope this post will get through to you. Each time I attempt something on the computer that I'm not that used to, I wonder if it's really going to work right!!! I know it is late there...we have a 3 hour time difference what with me being in San Diego. My best to you. I hope you had a lovely day, and will have a peaceful weekend. Sincerely, Laura.
    Greetings from another Pittsburgher. We moved a bit north and now live in Beaver County for the past 6 years or so. My husband was diagnosed at Allegheny General by Dr. Rana who is the director of the ALS clinic there. Have you attended a Clinic ??

    I'm here if you feel like chatting, ranting or need a hug. I'm good at hugs!
    Nancy
    Hi, I saw you are from Pgh. and I wanted to touch base. I'm in the South Hills and my mom (87) passed from bulbar onset als shortly before Christmas. I hope you are doing as well as you can be.
    Trina
    Thanks for letting me know how you are doing. I'm glad you got to go to Florida and see your sister. Why was it a good idea you cancelled the cruise? I too am adjusting to being in a wheelchair. In December I was still teaching full time, and walking (limping) around. I keep offering my loss of independence to the Lord, and turning to Him again and again with tears and with trust. I find that things are not as hard when I focus on Him. My doctor encourages me to go places and "create memories" while I can. If you would like to email me, I'm at [email protected] We could perhaps communicate more personally that way. You are in my prayers.
    -Charlene
    Audrey, I've been wondering how you are doing lately. I'm hoping and praying that your decline is levelling off, and you are having some better days. I find I need to get lots of rest. "Let us fix our eyes on Jesus, the author and perfecter of our faith who for the joy set before Him endured the cross." (Heb.12)
    - Charlene
    Jeanau, about being anxious about the process of dying with ALS, my social worker and others have said that it doesn't have to be so bad. People toward the end sleep more and usually pass away in their sleep, not choking or fighting for air.
    Charlene
    Jeanau, thank you for your personal message. It is somehow helpful to know that I am not alone, that you know exactly, exactly what it is like to go through this. Unlike you, my symptoms started suddenly in mid November. I'm sorry you are progressing more quickly now. I understand what you mean about your hands. My arms have started to get weaker, and today I burst into tears after playing the piano, realizing that my piano days are numbered. Each loss I offer up to The Lord, telling Him I trust Him and love Him. What else can we do in our situations but fix our eyes on Jesus. I cry out to Him over and over. So many people are praying for healing. I do find comfort in faith and prayer. I feel badly for you, newly retired and looking forward to relaxing and doing new things after years as an educator. Jeanau, let us pray for one another.
    Hello! How awful to get the diagnosis no one can believe. My husband's was last March so we are still relatively new at this. ( I'm so new that I was almost finished writing you a rather L O N G post here when I did something wrong and it disappeared! So I still mess up. ) Mainly I wanted to say you found your way to a wonderful place with terrific people. The first months I was all over the internet for hours on end each day. Now I only come here - usually just to read. Sometimes to write.This is a tough ride. Let those who know all about this disease and have helped others for years, help you two, too. They are caring and generous to us newbies. I offer my relatively new CALS (caregiver) shoulders to lean on if needed. I'm practically a neighbor in Beaver County! Wishing you moments of peace and comfort in the midst of the storm. Fondly, Nancy
    I'm a happily retired educator who was sadly diagnosed with ALS last month.

    The time it took to arrive at this diagnosis was short. I started looking into my leg weakness in September, was tentatively diagnosed on December 4th, and officially diagnosed by Dr David Lacomis (ALS specialist at Pitt) on New Year's Eve.

    My husband and I are still in a state of shock!

    I have lower limb onset and my legs seem weaker every day. I get around with a cane and I've begun using my rollater. We had stair lifts installed last week. I pick up my AFOs tomorrow. My hands are becoming weaker and it saddens me to think about giving up sewing. My voice is weaker and I have a dry cough...as of now I'm able to drink and eat without difficulty. My lung function is strong.

    My faith is very strong and I'm not afraid to die...but, I'm anxious about the process of dying with ALS. I appreciate all that you share on this site. I believe that knowledge is power and support is a blessing.
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