White matter disease.

klucey

I have white matter disease which can progress to dementia. My neurologist and neuropsychologist have ruled out this as cause of my cognitive problems and say I don’t have a cognitive disorder, but untreated depression and grief. But I have more lesions on my brain than 5 yrs ago and memory worse as well. But there are also improvements. I’m however not convinced as I am distracted mentally, have problems absorbing info at times, feel constantly fuzzy, and can no longer play the piano, knit, paint. I’ve had depression related cognitive dysfunction in the past and this is different. Antidepressant didn’t help which is common with this disorder. So I’m very anxious and have lined up will, POA and trying to figure out financing for longterm care — which I don’t have enough of. I’ve also explored medically assisted aid in dying. I’m not in the same situation but there are no support groups for this lesser known disease and dementia. I feel great empathy for everyone here.

I do recommend Still Me by Rebecca Chopp who has successfully slowed progression as laid out in the book. She also shares her fears for the future.

Iris L.

I have had white matter disease for several years. My neurologist is treating me with a variety of modalities. Read about leukoairiosis.

Iris