AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question I wrote once before and greatly appreciated the response to my question. I questioned the grimacing that my sister was doing. She no longer does that, in fact, on some days she actually has the "giggles." Nice change. But now a new symptom is showing itself. She is listing to one side (R) when she walks or sits. What might be causing this?
Answer Hi Ilona, I'm glad she's feeling more content - you must be relieved. It doubles the heartbreak when the person you love is in distress.
Gait problems, and balance issues are common in many dementias. Irrespective of the cause, as brain damage advances, the problems get worse and worse until the person looses their ability to walk. Issues include impaired physical coordination (ataxia) which starts to show itself in a shuffling gait; slowness of movement; and an altered posture such as the leaning you observed.
When they are leaning significantly, it is sometimes called Pisa Syndrome (yes, like the leaning tower!) - although you will see some web sites describe it as rare, it really isn't. It happens to people with various kinds of brain lesions, Parkinson's disease (which causes a form of dementia itself), Lewy Body dementia, in Pick's, in Alzheimer's, and as a side effect from certain neuroleptic drugs like antipsychotics and cholinesterase inhibitors (classes of drugs sometimes used to treat AD). It is a stooped posture with pronounced leaning, generally forward or to one side when sitting or standing. It's so common in Lewy Body dementia they call it the "Lewy Lean". The person don't seem to be aware of it, and doesn't really have voluntary control of it - you will probably notice if you convince her to straighten up, a few seconds later the lean is back. For some people, it's always one sided (i.e. they will always lean left), and others will lean in various directions. It's a form of axial dystonia. It appears it's from an imbalance of neurotransmitters. There is some suggestion in a 2007 study I saw that in people with Alzheimer's, it is related to cholinergic excess.
Sometimes changing meds will help (if the lean is at all related to any meds she is currently taking), but more often, it's something that can't really be helped, other than trying to really be vigilant about fall prevention for her.
It's worth discussing with her doctors and doing a review of what she's on to see if anything could be contributing.
