Reply To: Determining Axonal Damage Using EMG Results
Thank you, Eldad. I appreciate your response. I think her doctor knows from oblique references he’s made, but at this point we really need someone to level with us so that we can help her make some decisions about living arrangements. She’s 71, lives alone, bought a new condo last October w a large mortgage and has needed 24-hour nursing care to live there for the past 2 months (after her third discharge from rehab since January). If she has a high level of axonal damage and may be facing years of intense therapy and treatment to be able to live independently again (provided a new treatment plan keeps her out of relapse), she can’t afford to keep her condo. She’s a strong, practical woman (30+ years as a social worker) and responds well when faced with bad news. She also gets the feeling he’s holding out false hope. We’ve already seen Peter Donofrio at Vanderbilt for a second opinion (he did the latest test). While that was immensely helpful, as it confirmed the diagnosis and got her a new treatment plan) I still don’t think anyone has really leveled with us about the extent of axonal damage. She’s gone a long time without the correct treatment. We have high hopes for the new treatment plan. It would just be so helpful for someone to say, “Look, there’s enough axonal damage that you could be looking at 1-3 years of treatment and therapy to be able to live alone.” Then she could decide whether she can continue to keep the condo or look at assisted living.
Thanks again for your response. Thank you also to anyone who has additional advice.