Neurodegenative Disease Support

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This community is a gathering place for all those affected by neurodegenerative diseases. Patients, family, friends and caregivers are welcome. Share info, ask questions, or vent about your day. Whatever you'd like to talk about, we're here to listen.

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ZenGrammy

It's a new month! How was everyone's August? (self.neurodegdissupport)

submitted 1 year ago by ZenGrammy to c/neurodegdissupport

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I can't believe September has crept up on us already! I went on a road trip with my husband and my best friend a few weeks ago. The car ride was 10 hours long. I can't drive anymore, so hubby has to do all of it. I had to put many pillows around and behind me, and also ban air conditioning in the car unless the internal temperature was over 75 because it hurts so much when the cold air blows directly on my body. I enjoyed the trip and visiting with my friends. I hadn't seen them much at all since Covid started because it's often not safe and they don't put me at risk just for a visit.

Sometimes I'm amazed that my husband has stuck with me for so long given the fact that he would happily live in a refrigerator and I would happily live at over 80 degrees all the time. We make it work by having separate bedrooms. It's very important when you are "thermostatically incompatible" like we are.

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[–] [email protected] 2 points 1 year ago

From my (unwritten, mostly mental) gratitude journal:

My partner has Alzheimer's, and is in a nursing home. Can't walk, feed herself, needs more care than I can personally supply or round up for home-care.

But: I am grateful she still recognizes me, knows that I love her dearly, and can carry on a basic, simple conversation. I am grateful her nursing home's union negotiated a new contract with pay- and staffing-level increases. I am grateful that her wing has a new unit manager who seems more able to do the hard work of keeping the cats (aides & patients both) herded. I am grateful I have the ability to visit daily. I am grateful for those who support me IRL and online.