Mar 6
PRL
PRL , Posted on SUPPORT NETWORK Blog

locked-in-syndrome

My 49 year old daughter had a stroke on Jan.16th, resulting in locked-in syndrome. She is able to communicate with the use of a spelling board. She has a little movement in that she can turn  her head. Sometimes she can squeeze a finger, but that is all.  She was working in NY and is in a Brain Rehab Center there. Her family lives in CA and we hope to bring her out here as soon as she is able to travel, the insurance is in place and we can find a facality in Southern California.
6 Comments
  • Dottieann
    Dottieann,
    I am so very sorry to hear this...I will keep her in my prayers your job is to stay positive.. Dottie
  • purple heart
    purple heart,
    I agree to stay positive! It will be a hard road for both of you...so stay positive! I had a brain bleed during my hospital stay after a cardiac arrest at age 34! I had to relearn a lot but I still had my old self inside of me fighting to get better and yet I would not understand why I was being held in a hospital which I thought was a nursing home or crazy bin! I did not think I belonged in rehab either! I could hear everything and was watching everything!!! So please be careful to only talk positive and not bring up any thing negative about the past! This will only cause heart ache!! Tell your daughter you believe in her and love her! Reminder her that she had to learn this as a baby and she did amazing even though it took time just like this will!!! Let her know there is life after a stroke!!! Let her know it's okay to rest and try later!! I believe she is still the same woman inside!!! She too like you will have hard days and get depressed and then something little but wonderful will happen!! Sorry for going an and on!!! People gave up on me and unplugged me from the bi-vad machine!!! I still fought and now doing great! Yes I still have difficult days and it can be really hard !!! Just know I had my two young children loving me no matter which sparked a fight in me to get better!! Just give your daughter lots of hugs and positive support!! Tell her I wish her the best!!! Also play classical music for her!!! My brother did for me in the hospital and rehab!! It helps develop the brain!!! You as the mother need to take care of yourself first! Make sure you get rest and come in with a smile! You can do it!!! Just stay strong!! It's hard!!! I too had to nurse my daughter back from a fractured neck and surgery! She is fine now and doing wonderful! I would be happy with her but as soon as I left the hospital I would drop to my knees and cry!!! My son would fix me dinner and then we both would return back refreshed and positive!! I just want you to truely believe anything is possible if you try and stay positive around your daughter !
  • steedo
    steedo,
    Hi as i continually post n this site and others; buy, borrow or steal if necessary a book by norman Doidge "the Brains way of healing" The closer to the stroke and the more one tries the more the brain has a chance of finding new neural pathways to recovery. I dont recommend prayer as it is as random as winning the lottery and zaps valuable brain space. i did work dam hard to fix my speech my memory my mobility. Most of all make your daughter feel valued not pitied and give her hope and small goals to strive for. My bloody right leg still isnt completely on the program but after 15 months I am not giving up on it! its a grieving process for your daughter for the self she was [and for you too] but dont let the grief become all consuming. Kind regards Stroke Bloke from down under.
  • Infobug
    Infobug,
    Music! Sounds as if her intake of information hasn't been compromised although she has limited cmmunication apparently. Play her different kinds of music and you will probably get surprising reactions...some types she may hate, some she will love. She'll work on letting you know which of these she favors. I'd take the credit, but William Shakespeare said it so much better. Said he, "music hath power to sooth...(and you know the rest of the sentence.) Meanwhile, blessings to all of you, from a stroke survivor.
  • elissa
    elissa,
    My heart goes out to you and your daughter. I agree with what has been posted especially about music. My husband had a severe stroke with left side paralysis almost 2 yrs. ago and is still struggling to walk again (can manage slowly with a walker on wood or tile but not concrete or carpet) and has very little use of his left hand. Dealing with massive stroke is like riding a roller coaster. You will have gains and then setbacks which can be very depressing. My husband had 2 stints in a rehab for 3 weeks each and then 8 months in outpatient brain injury transition services 3X/wk. He has had home therapy for 9 months which will soon come to an end. Then we will be paying for his therapy. It will be hard to maintain your input at a high level consistently. They all say to take care of yourself but that is easier said than done. Be careful to not let your health go down. I have problems I did not have before his stroke. If you have close friends, reach out to them. You will need them to vent, share and if possible spend time with. You definitely need to get out and into the world. If your daughter has round the clock help, arrange on a regular basis to meet with people who really care about your journey. If people sincerely offer to help, let them. I will pray for your daughter for the best possible outcome and will pray for you also as you will need it as much as she. She is fortunate to have a supportive family. May God bless all of you.
  • Raiz_Ali
    Raiz_Ali,
    Lots and lots of prayers/blessings for you and your daughter.
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