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  • Ankle is healed! Missed Clinic, will reschedule for March. Aide still trying to turn me into a Flamingo! Hope Hoyer anD tobei are working well for you.
    Wishing for a tongue like a frog!
    I saw where you mentioned something about a Tobi device. Please send me a message on what that is please. My dad is losing strength pretty rapidly and his fingers are pretty bent too. I will be praying for you. Kim
    Sorry to hear about your knee. I'm always having to remind my aide to support the joints when she moves me. Mine sound like rice crispsies if the caregivers aren't careful. One is bad to pick up my foot to move my leg, hyperextending the knee. I just told her today that I'm not a flamingo. Maybe that picture in her head will help her to remember.
    Typing is getting more difficult and unfortunately so is feeding myself. We often set my dish on a photobox on the table and I have my arms propped up with pillows on the armrests. My neck gets a workout trying to help get the food to reach my mouth.
    I go to Clinic next month, so will see what's up next as far as equipment goes.
    Foley is a tube that provides continuous drainage of the bladder via the urethra. Convenient but risk of UTI is high.(urinary tract infection)
    Good luck with the caregivers, I hope you'll have some good ones. Ours aren't allowed to transfer me, just here for personal care.
    Hi, hope things are going better for you with the transfers. I broke my ankle in Nov during a stand and pivot transfer to the toilet. First ever broken bone and not fun! I did get a Foley catheter though which alleviates the need for multiple transfers. We're now using a bed side commode and the Hoyer lift full time. I'm not fond of it but it is much more tolerable as the ankle heals. I've lost too much trunk stability for continued safe use of the transfer board.
    How did the OT work out? I've had regular Nurse, PT , OT, and aide visits since the break. We've been so lucky with our OT and PT from our local home care agency. They are wonderful! I'm due for recertification tomorrow to determine if home care services will continue.
    Hope you guys found some joys to share during the holiday season.
    Thank you for your speedy response, you are truly the helpful member. The OT is scheduled for next week but the rapid decline has made it hard to stay a step ahead. As you know, it's very difficult to lose your dignity so suddening. No I don't have a Hoyer lift or a transfer board but we did buy the transfer disc, a day late and dollar short. The big problem is that my CALS is not very strong or steady either, which makes it even more precarious. How often are you able to shower? Does the transfer board require upper body strength? Again thanks for all your help, Cynthia
    I'm so sorry you're having such a rough time. Independent toileting has been THE most difficult adjustment for me. I wear Sillouettes (a Depends product like pull-ups) I too miss showering on a daily basis. It's so hard to have to depend on someone else for these needs. We're using a transfer board from PWC to bed and also to the shower chair. I know what you mean about the bumps and bruises. Do you have a Hoyer lift? Your doc should order a home visit from an ALS knowledgeable PT and OT. They can assess your needs and train your CALS in the correct manner of transfers and give them tips to avoid the injuries you are currently experiencing. There are also videos on You Tube that demonstrate the use of thE transfer board and the Hoyer. It's imperative that your CALS is constantly aware of the location and safety of your limbs at all times during any transfer.
    Hope this helps. Good luck.
    Please register at the CDC website for ALS. They're compiling a National data base of ALS patients to assist in research. Also register with your state's local MDA and ALSA. They'll provide you with brochures and booklets about the disease and tips for caregivers. They also produce a newsletter and both have online sites that you can visit for info and updates on research. Check out the new NEALS website for info on clinical trials. ALS Clinical Trials | ALS Clinical Research |
    The Northeast ALS Consortium (NEALS)
    Cynthia, You'll need a doctors script for the handicapped tag for your car. Once you have that, just take it to your local DMV. Get copies of your medical records to for Social Security. You can go to their online site to start the process, it does take a bit of time to answer all of the questions. the two year wait is waived for an ALS Diagnosis. You'll need to have the date that your were disabled and a list of all your physicians with addresses and telephone numbers. You'll also need a list of all the labs and tests that were done to arrive at your diagnosis. You can ask for copies of all the results. You'll need the name and address of the facilities where the tests were done as well as the name of the physician who ordered the tests and the dates they were done. You'll need to take your social security card, marriage and driver's liscense with you when you go to your social security appointment. The SS site is www.socialsecurity.gov
    Much luck, Deb
    Hi Cynthia,

    Just wanted to let you know that I understand how it is to be scared, and to take the ignorance is bliss approach. Having been a hypochondriac for as long as I can remember, I've gone from that approach, to running to the doctor and/or specialist for everything (which is where I am right now). I know it seems like no news can be good news, but think of it this way - you're already worrying about it, so not going doesn't seem to be giving you any peace. At least by going back you'll get some answers. And by no means do those answers have to be ALS - there are an infinite number of other very treatable conditions that are much, much more probable than it is :)

    Have a happy thanksgiving weekend - always here if you need to talk.
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