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  • Gee, thanks Atsugi for all the detail since my head's spinning trying to coordinate everything and trying to duplicate as best as I can the current Mayo services (Boylan diagnosed) they are receiving while living in Jax into the Orlando marketplace. So it sounds like for symptom/medication management you pretty much used a PCP. I guess they've been nervous in having actual physician services through the VA because of VA system stigma they've heard about and had hoped to utilize private health providers in conjunction with all the assistive devices through the VA. Once his paperwork is finally approved though, I'll guess we'll talk to someone to see how/if it's possible to coordinate things this way...
    <part three>
    We visited the St Petersburg VA Regional Office and made sure they expedited everything. The house modifications took time because contractors have to visit.

    If you haven't bought a van yet, I recommend Nicole Wooleyhan of Mobility Freedom. She knows the VA process, and drove several vans to our house. Drive your chair into them and watch for headroom.

    The Orlando VA got a little bit of experience with ALS because Krissy was a doctor there. They did swallowing studies and provided Palliative Care near the end. Dr Bill Sheahan is in charge: he's smart and nice.

    At the end, the VAMC contracted with Hospice of the Comforter, which has a good reputation. But you'll need to interview every nurse at the beginning of her shift. They all look confident, but none have dealt with ALS. Get ready for catching naps when you can. But don't forget, it's all about giving your dad control over his final days, and making him happy.

    Good luck to you.
    <part two>
    Frankly, after the diagnosis, we had no need for a neurologist, but plenty of use for physical therapists, massage therapists, bathing aides, and, toward the end, nurses in the house. You'll need to be the expert, because you'll need to ensure each doctor and nurse understand what ALS really means to the body. It's a 24 hour job, and you can't expect a neurologist to be on call for every little cough, even if the cough is an emergency.

    We had need of EMTs twice, and made two trips to the ER when her CO2 rose too high. I also recommend antidepressants for the PALS and for the CALS, to help you get through each day as positively as possible. The prosthetics department at Orlando VAMC can provide some equipment.

    We used the Paralyzed Veterans of America office at the Orlando VAMC as our VSO. Good people.

    <more>
    This is three messages because it's a long one. First, thank your dad for his service. I served 20, myself.

    Dr August Joseph was the neurologist who diagnosed Krissy. He ruled out everything else and interpreted the EMGs positively. You can contact Dr Joseph at (407) 290-1558. He's near the corner of Lee Road and Edgewater at 5200 Davisson Ave Orlando, FL 32810.

    We got a most educational briefing from Dr Boylan at an all-day appointment at the Mayo in Jacksonville. An ALS team at the VA in Tampa performed pulmonary function tests, which gave us more education and a better estimate of life span. The Spinal Cord Injury team in Tampa provided a power wheelchair Permobil Model C400, which was excellent. Their Occupational Therapists were the best, and provided many helpful aids for day to day living, including the hospital bed.

    <more>
    Yes, he was in the Navy 22 yrs. And, we are already aware of the VA benefits; he got his paperwork sent in(in June) though it can take months to get approval. But compensation will be retroactive from June. Yes, we're fortunate of the extra benefits Congress appropriated for this aweful disease since military personnel are twice as likely to come down with this...
    I just realized your dad is 80 years old. Is he a veteran? That makes a very big difference!
    Wish I could be more help--we don't see a doc in Orlando for the ALS. we use to go to Mayo but it is 3 hrs from our house, and Tampa is only 1.5 hrs. Sanford is closer though than where I live, on the other side.
    We are huge Penguin fans also. Sooo glad that Boston came up empty-handed tonite and the cup went to Chicago! Just not our year I guess. Glad to hear about the housing situation working out for your parents.
    Thanks very much; not gonna lie -- it's a scary "journey" from what I've read and my parents are normally very strong through adversity but think this thing is really gonna be a buggar. They have a strong faith and have had a wonderful, rich, 55 yrs. together and this is just one of those things that will pull us all together even more to deal with. Luck would have it, that a place has opened up in Orlando they had been looking at going to for the past 5 yrs. or so. Soooo...they are trying to piece together a medical team there while still going to the 3-4 month ALS Center visits in Jacksonville. Think they are making the right decision to be near support from family and to have my mom all settled into a place once he's gone. He's in early stages so hoping to be all settled by the fall! How bout them Pens?! What happened??! (big fan here)
    Hi, I am from Pittsburgh also and my mom is 86 and diagnosed with bulbar onset als. I am so sorry about your dad. How difficult with him being in Florida, but at least he has your mom and sister to help. I hate that this is going to be the final chapter in my mom's life. Good luck on this journey.
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