This is a story of a family coping with multiple system atrophy (MSA):
Category Archives: MSA
Cancelled – “What If It’s NOT Parkinson’s?” Webinar on Tuesday, June 12th
Update on 6/11/18: Unfortunately this webinar is now cancelled.
Brain Support Network group member Steven Russell shared with me today info on an upcoming webinar, which will give an overview of all four of the atypical parkinsonism disorders — MSA, LBD, PSP, and CBD. Details are:
What If It’s NOT Parkinson’s?
In this webinar, Dr. Mihaela Alexander, Colorado Neurodiagnostics, will discuss atypical parkinsonisms such as multiple system atrophy and Lewy body dementia, among others (PSP, CBD). Dr. Alexander will cover what we know about these conditions and what treatments are available for each condition.
Tuesday, June 12
10-11am CA time
Organizer:
Parkinson Association of the Rockies, Denver, parkinsonrockies.org
Registration:
attendee.gotowebinar.com/register/3367947443153312002
General Information: (same as what is above)
parkinsonrockies.org/programs-services/event-calendar/276/2018-06-12/what-if-it-s-not-parkinson-s-webinar
Highlights from International Congress on Multiple System Atrophy
The International Multiple System Atrophy conference was held in early
March 2018 in New York City. In late April, an article describing the
highlights of the conference was published by NYU’s Dysautonomia
Center. Check it out….
Robin
Jackie’s example of a letter to family/friends to help them communicate better
On Tuesday, Jackie Vandenberg, who lives in NY with multiple system atrophy, asked people to share her open letter to family and friends. The goal of her letter is to help family and friends communicate with her better. I think it’s worth sharing with everyone as it is not MSA-specific but person-specific. Others may want to use this open letter as a model for their own letter to aide in communicating with your family and friends.
Dear friends and family,
I always appreciate when friends and family come to visit. I noticed
lately that some people struggle knowing how to talk with me as my
ability to communicate decreases. I have brainstormed a few things to help…
1) I enjoy socializing even though I cannot speak back. I’m interested
and am listening when others tell me about themselves. I like to hear
about how people are doing, their families, hobbies, vacations,
experiences, weekend activities, etc.
2) I wish to be spoken to as a person and an adult. Please speak to me
normally by not using slower or louder speech, or a reduced vocabulary
and sentence structures. I like to be part of the conversation by making
eye contact and being spoken to directly.
3) It’s easier/quicker for me to be asked ‘yes’ or ‘no’ questions.
4) When we’re together you can talk or not talk, either is fine. I’m
comfortable with quiet too.
5) I use a piece of cardboard with the alphabet written out to
communicate, we call it a Ouija Board. I can point to letters to spell
out words. I need someone else to hold the cardboard and adjust it as I
go. It can take a while for me to spell out sentences so I appreciate
everyone’s patience. It’s ok if you don’t understand a word the first
few times, as Tom and Adrianne can attest to.
6) When I’m using the Dynavox communication device it’s ok to fix
letters/autocorrect for me.
7) A symptom of MSA is excessive drooling. If you’re comfortable doing
so you can use a tissue or washcloth to wipe my mouth.
8) The best way to contact me to make plans is on Tom’s cell phone
through call or text. I check my email and Facebook messenger every
couple of days and am happy to get messages there too.
I hope this list is helpful for everyone! I love having friends and
family visit and appreciate all of our time together.
With Love,
Jackie
SHARE program available to some caregivers in the Bay Area
This blog post will be of interest to those living in the San Francisco Bay Area, who are caring for those age 60 or older without dementia.
Northern California-based Family Caregiver Alliance (caregiver.org) is
organizing a free educational program called SHARE.
Within Brain Support Network, three types of caregivers are eligible —
* PSP caregivers not dealing with dementia
* CBD caregivers not dealing with dementia
* all MSA caregivers
The care receiver (person with a neurological diagnosis) must:
– Be over age 60
– Be living at home in the San Francisco Bay Area
– Have intact cognitive abilities – NO dementia
– Not be in the terminal stage of their disease
The caregiver will receive:
– 6 in-person home visits
– Learn effective communication skills
– Learn to reduce stress
– Learn to promote health
– Learn about long-term care management (make the most out of today
while planning for tomorrow)
If this is of interest, contact Michelle Venegas (415-434-3388, x323,
[email protected]) at Family Caregiver Alliance.