Silver linings to Parkinson’s and other neurological disorders?

In January 2022, neurologist Dr. Bas Bloem posted a video online, commenting on whether there were any silver linings to being diagnosed with Parkinson’s.  He said that it was his perception that receiving a PD diagnosis often caused people to pause and reflect, and decided to put energy into their families, enjoy their children, and travel to dream destinations.
Continue reading

Checklist for When Your Loved One Dies

In May 2022, Lisa Stambaugh, daughter of a local support group member with Parkinson’s Disease, created a website, WhenYourLovedOneDies.com.

In 2015, when Lisa’s father Ira died, Lisa searched online for a list of all the tasks that needed doing when someone dies. She did not find a comprehensive list. So, at that time, she created a to-do list in Google Docs to share with her sister and keep them both organized. Lisa converted the Google Docs list to a PDF, and has been sharing it with interested parties that way.

Now, she has created a website, where both the Google Docs and PDF are posted. See:

The Checklist
May 2022
Lisa Stambaugh (WhenYourLovedOneDies.com)

Like all good lists in this category, it has sections based on timeframe — things to do immediately, things to do soon, things to do later.

For those in the SF Bay Area, the advantage of this checklist is that it includes some helpful Bay Area-specific info, such as phone numbers for PG&E, etc.

The Brain Support Network blog has a few other checklists to consider:

Three good lists from 2010 and 2012 (especially a list of 100 things)

Help for Seniors list from 2020 that is specific to spouses and includes a list of needed documents and information

AARP list from 2020

Robin

“Chronic Disease, Your Healthy Spouse, and Sex” (article)


Many chronic conditions (and medications used to treat these conditions) can affect sexual interest.  This is true for all of the atypical parkinsonism disorders and Parkinson’s disease.

Health Central has a good article on this topic.  Excerpt: 

Marriage is hard for everyone, but it can be even harder when one person has a chronic condition. Disease, illness, and disability can make a partner seem like a different person. That’s no one’s fault, says Laurel Wittman, board president of the Well Spouse Association…  “This is an area that people really struggle with,” she says. While some partners come together to find ways to sustain physical intimacy, for others the situation takes a huge toll on the relationship.


Read the full article here:

https://www.healthcentral.com/article/chronic-disease-your-healthy-spouse-and-sex
Chronic Disease, Your Healthy Spouse, and Sex
Health Central
March 21, 2022

“Genetic Testing May Influence Treatment of Neurologic Disorders”

Excerpts from this recent article in Brain & Life (brainandlife.org) magazine:

“Identifying genetic mutations associated with neurologic disorders may influence treatment and management—and inform decisions about getting tested. … Researchers are still working to understand exactly how these variants interact with each other and with the environment to cause disease. Many of the more common neurologic conditions such as multiple sclerosis, Parkinson’s disease, and Alzheimer’s disease are associated with less severe variants in multiple risk genes, but in some cases they are produced by variants in single causative genes. … If people have puzzling neurologic signs or symptoms, or if one or more neurologic conditions seem to run in their families, should they pursue genetic testing?  The answer depends on the disorder and the usefulness of the information to people and their doctors, according to experts.”

Continue reading

“Their Dementia Diagnosis Doesn’t Mean They’re Keeping Silent” (WSJ)

This terrific article from the Wall Street Journal in the fall of 2021 notes: 

“As the number of people with dementia grows, more of them are speaking out to challenge assumptions about what they can and can’t do.  A group of advocates, many in the earlier stages of this condition, say that people around them often struggle with understanding the full range of symptoms. …  Life expectancy for those with early-onset dementia varies. One 2019 study showed a mean survival time of 17 years after symptoms start and 10 years after a diagnosis.” 

Continue reading