Can ALS / FTD account for all these changes?

[Hewitt]

My sister just left after a long visit, and I find myself just astonished at the changes in her over the last six months. She is much weaker and must use assistive aids to walk in the house or have someone support her if she walks outside, and after a mile or so of walking, foot drop kicks in, which would result in falls if she were not supported. She is having a terrible time eating and taking pills and will apparently have a PEG tube inserted next month, and she is now incontinent much of the time. As sad as these changes are, her behavioral changes are almost more troubling, because her once-vibrant personality is disappearing rapidly, too. She is childlike and stubborn, makes poor decisions, and refuses to bathe, wash her hair or brush her teeth, so her hair is matted and her teeth are now black. She gets up to go to the bathroom at night and almost invariably heads for a closet door rather than the bedroom door and gets lost. She can still play Chopin nocturnes and retains some very specialized knowledge, but generally functions at a much lower level. Can all of these changes be ascribed to ALS / FTD, or do you think a referral to another specialist might be in order? I have read that incontinence is rare in ALS (although not in dementia patients, and my sister's behavior increasingly reminds me of my mother's last years with Alzheimer's disease). Has anyone with incontinence found any help with drugs like Detrol? I'm sure these changes seem less obvious to her family, who see her every day, but they are really shocking to me, and I hope to encourage her family to get her some nursing care to improve her comfort, health and quality of life.

 

[lgelb]

If she did not get a second opinion on the ALS dx, and maybe even if she did, I would get another one. The short answer is, it's possible, but unusual, in the time span as I recall it. Did she have a brain MRI or CT during the diagnostic process? Have infection/dehydration/malnutrition been ruled out as etiologies for these symptoms?

As for incontinence, if the problem is physical (muscular), an anticholinergic might help. But if it is more mental, then it is less likely.

I agree that it doesn't sound like her family is dealing well and I would talk with a social worker or case manager at your sister's health plan, clinic, hospital or ALSA/MDA chapter about options for more help.