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The Calendar

The Calendar

December 27, 2023 | by Jeri Gore, Editor-in-Chief of the IAES Blog

Each year since I have had the honor of having this job as Editor-in-Chief for IAES we have created a calendar. This calendar can be used and shared by all administrators at IAES to note important information that may be coming due. We use it to note events such as seminar schedules, publication dates, anniversary dates of import, dates to have jobs and other projects completed, and anything any of us need to remember and/or have all of us keep in mind regarding what is coming up.

 Creating a general calendar is something I’ve done for my family for years. Before we could share our calendars across electronic or social media platforms, we had a family wall calendar. I have kept those calendars as keepsakes. When I look back through them, they serve as a journal of sorts. I have a wonderful husband, four sons, and pets, and am blessed with amazing family and friends. We used our yearly family calendar to mark everything, so each family member would know what was happening daily. Sometimes when I look back and peruse these calendars such as the year our twins were born, I have NO idea how my husband and I ever had time to address basic needs such as sleeping and eating.

In 2019 I was diagnosed with AE, one of our sons was married and we moved. The 2019 Gore family calendar is heavily peppered with wedding-related meetings, fun events, house-buying, moving-related appointments, doctor’s appointments, and hospital stays.  It was a year of big ups and big downs: celebrations and tears.  Some folks love to write in journals and some document via pictures and videos. I journaled, in a way, via our annual Gore family calendar. Although my intent was not always for that purpose, at some point our family calendar transformed into a living journal that detailed the story of our lives. I love to occasionally look through them recounting the memories.

2023 is quickly winding into 2024 which has turned my direction to actively creating the framework for the IAES 2024 calendar. I am starting to look towards what 2024 will bring IAES and AE research in general. The webinars and events that will encompass and fill February/AE Awareness month are some of the biggest names in the field of Autoimmune Encephalitis, a star-studded line-up.  The art show and annual awareness video. I wonder what new information will come out in 2024 that we can present to all of you on the IAES website, newsletters, and blogs?

As I approach the 5-year anniversary of my AE diagnosis and I have the honor to look back on the IAES calendars of the past few years I am amazed. In a word, all I can say is WOW! The amount of work IAES has accomplished is breathtaking. I am constantly in awe of the folks I get to call my IAES family, the work they accomplish and the lives they touch! The amount of research into AE, therapies for AE, awareness of AE, and clinical studies for AE and the rate that all of this has sped up is awe-inspiring. There is still a mighty long way to go for sure. We still have many mountains to climb regarding AE awareness, treatment options, and ongoing rehabilitative therapies. But, for all of us thousands of AE Warriors, caregivers, and clinicians, I believe our future is very bright.

I wish you all a happy healthy New Year! May your 2024 calendars be positive, and bright, and may the mountains you must climb this year be less difficult!

 The best is yet to come!

 

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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The 12 Daze of Christmas

The 12 Daze of Christmas

December 13, 2023 | by Jeri Gore, Editor-in-Chief of the IAES Blog; Sung by Barbara Layt Vujaklija 

Happy Holidays from the entire staff at IAES!

To all our members all over the world and in whatever manner you celebrate we send our love, we wish you happiness and good health in the coming year!

We hope you enjoy this song and video as much as I do! When I first heard it, I laughed so hard my stomach hurt. The Twelve Days of Christmas has always been a favorite Christmas song of mine and to hear Barbara’s AE spoof on the original is brilliant and fun! IAES first released this back in 2015 when IAES was in its infancy.  Barb, our very first volunteer, and Tabitha Orth, our founder and president, wrote the lyrics.  Barb sang. How she did it without laughing is beyond me, but I am glad she did because we can all enjoy her merry take on a fun song for years and years.

I thought it appropriate to publish this video/song at this time in honor of the season as well as the person singing. Barbara is retiring from her post at IAES after years and countless hours spent volunteering on behalf of every single one of us. We have all been touched by Barb or the programs she helped to start. As stated above, she was the very first volunteer even before IAES became an official nonprofit organization. All new members have been greeted by the folks she helped train through the membership committee which she began. She and her team have guided over six thousand inquiries for new membership and helped direct them to the people and programs that best benefit each individual. Barb started the IAES blog and The Herdnewsletter. Both publications are unprecedented in the AE community. As a trained nurse and AE Warrior, herself, Barb has helped countless members and their families throughout every aspect of their AE diagnoses and journey. Barb’s knowledge, sense of humor, ability to remain calm in a crisis, and positive/can-do attitude have helped IAES become the organization it is today and will be in the future.

When I took over the IAES blog three years ago and became editor-in-chief I had mighty big shoes to fill. I was nervous! Barb was patient, helped guide me in an area in which I had no experience and always made me feel as though it would all be ok. To say I admire, and respect Barb is a complete understatement. It is because of Barb and folks like her that many of us with AE and our caregivers have had the help and guidance we have needed, and AE has gotten to the point of awareness it is today.  I, for one, will be forever grateful.

We hope you enjoy this song/video and giggle as much as I did! Barb, thank you for all you have done and for giving us your time, patience, and your singing voice

Click here or the image below to subscribe to our mailing list:

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The 12 Daze of Christmas

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The 12 Daze of Christmas 

Be a part of the solution by supporting IAES with a donation today.

 

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5 Ways to Answer “How Can I Help”

5 Ways to Answer “How Can I Help”


November 22, 2023 |  By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

In the US, Thanksgiving Day and week are upon us. And we have much to be thankful for. For those within the AE community, we cannot thank all those that care for us, in any capacity, enough! As we round out Caregiver Awareness month and head into a holiday season of joy, peace, and grace, may we all continue to be aware and be thankful for all we have been given. 

Michelle Seitzer founder of Caregiving Advice has graciously offered to let us share her article regarding ways to help those that care for us the most. We hope you find this as informative as we have!

She offers wonderful tips, and many ways caregivers can be cared for!!!

——-

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

During this week’s Coffee Chat—our brand new virtual support group that takes place Mondays at 11ET on Instagram Live—we talked about what kind of help is actually helpful for caregivers, and why it’s so hard to get it.

We first posted this article in February 2020, right before the world shut down. How times have changed since then! But the advice we shared here? It hasn’t changed at all. Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

When caregivers hear these age-old phrases—“How can I help?” or “Let me know if I can do anything!”—our initial internal reaction is STRESS. Because the thought of coming up with helpful tasks feels like extra work, and extra work is something no caregiver wants. We want someone to lighten our load, not add to it!

Now don’t misunderstand: We are generally thankful for the offers. We appreciate that you see our need for help and want to provide it. But we need you to make it a little easier for us. And sometimes, we just need a little more time to think about it! As caregivers, we need to say that. “Thanks for your offer, can I get back to you with some ideas? And can you check in with me in a week if I forget?”

So caregivers, next time someone asks you *THE QUESTION,* refer to these 5 simple suggestions. And if you’re reading this as a person who wants to help a caregiver, thank you for your willingness; we hope you find these ideas helpful!

#1: Bring us a meal.

An oldie but a goodie: make us a meal! Or make a couple of meals for me to stack in my freezer, or send gift cards for GrubHub, UberEATS, or our favorite local pizzeria. Planning meals is often the last thing we want to squeeze into our busy day, which leads to lots of unhealthy dinners like frozen pizzas—or even worse, skipping meals altogether.

#2: Come visit us.

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Offer to sit with our caree for a few hours while I run errands. Don’t feel comfortable with that? Just stop by for a visit when I’m there (if we’re all up for visitors that day)! Caregiving can be extremely lonely, so it’s a huge help to see friendly faces and welcome visitors! It’s equally as refreshing to have someone take over so I can get a few items checked off my to-do list.

#3: Fill our (gas) tanks.

If you really want to do something of monetary value for us, a gas gift card is always appreciated! There’s a lot of driving involved in caregiving, and it adds up. And financial pressures add to our already heavy caregiving load.

#4: Bring us groceries (treats included).

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With online shopping now available in almost all areas—and with a variety of pick-up, drive-up or delivery options—this is an easy way to help that makes a HUGE difference!

Think of how much work it is to grocery shop…

It starts with planning: thinking about meals and snacks, then assessing what you need, taking note of what you’ve run out of, and jotting it down.

Then you have to figure out when to go, and depending on your caregiving situation, this can be a logistical challenge. Who can stay with your caree, if they need supervision? Or do you bring the person along, which comes with its own challenges? Some caregivers opt to shop at night when a spouse, partner, or child can stay home with the person you care for—but that often means shopping on tired legs and with a weary mind.

Now that you’ve figured out when to go, you have to drive there, go inside, fill your cart, empty your cart on the belt, load the bags in your cart, bring them out to your car, load them in your car, drive home, bring the bags into the house, then put the groceries away.

And then, of course, make a list of the things you forgot, because that inevitably happens, right?!

When you break down all the steps, you realize how much work is involved—and why it would be SUCH a help for someone to step in on this necessary life activity. (It also makes the case for paying the nominal delivery fee for those services, if you ask me!)

#5: Update others for us.

Offer to update others when something big happens. This one is a little tricky in terms of privacy, but it can still be super helpful.

The key word here is “offer.” Never give updates on my caregiving life without checking with me first. But if you know something big just happened (new diagnosis, a fall, change of living situation or school depending on age, a death or similar big loss/change in the family, etc.), ask me if I could help with letting others know.

Who are those “others?” Those are the people who would love to hear the latest on my caree but don’t necessarily need to hear it from me directly—i.e. my pastor, neighbors, boss/coworkers, friends I haven’t talked to in a while, to name a few.

It’s emotionally exhausting to repeat the same information — especially bad news — over and over again, so having someone offer to take on that task provides a huge sense of relief.

 

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below. 

 

Click here or the image below to subscribe to our mailing list:

subscribe - 5 Ways to Answer "How Can I Help"

Your generous Donations allow IAES to continue our important work and save lives! 

seal - 5 Ways to Answer "How Can I Help"

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - 5 Ways to Answer "How Can I Help"

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - 5 Ways to Answer "How Can I Help" 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

Holiday Gift Guide for Those with Neurological Issues

Holiday Gift Guide for Those with Neurological Issues


December 14, 2022 | 
by Sarah Watts. Illustration by Jeannie Phan. Republished with permission from Brain & Life Magazine 

A message from IAES Blog staff:

The holidays are a busy time for everyone. For those of us with neurological issues and for those that care for us, this busyness may seem overwhelming at times. In 2021 Brain & Life magazine published an article that may make one part of the holiday season a small bit easier and much more fun.  They published an article that provides a fun and useful list of gifts for those with neurological issues. It is our sincere hope you find this as helpful as we have! 

——-

Thoughtful Holiday Gifts for People with Neurologic Conditions

Our guide makes gift-giving a cinch—and fun.

 

If you ask John Andrejack, a 53-year-old college professor from New York City, what he wants for the holidays, a massage is at the top of his list. It’s the kind of gift that’s personal, he says, but also practical: It helps with the muscle aches that are a symptom of his Parkinson’s disease.

Diagnosed at the age of 47, Andrejack has had several holiday seasons when friends and family wanted to give him something both meaningful to his personality and appropriate for his condition, but it’s not easy. This is mainly, Andrejack says, because Parkinson’s disease and other neurologic conditions such as stroke, traumatic brain injury, tremor, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS) vary so much from person to person.

“What might be really useful for someone might not necessarily be wanted by someone else,” says Erin Cecchi, MSW, LCSW, senior program coordinator and clinical social worker at Northwestern University’s Parkinson’s Disease and Movement Disorders Center in Chicago.

But the possibilities are expanding. As the number of Americans living with a neurologic disease increases (that number is now 25 million, according to a report in Annals of Neurology), companies are responding with suitable products and services.

Here are some gift ideas from people who know: neurologists on the editorial board of Brain & Life, physical and occupational therapists, and patients like Andrejack.

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Gifts for the Home

Satin sheets.
Soft, slippery sheets make it easier to move around in and get out of bed. (amazon.com, bedbathandbeyond.com, sheex.com, target.com, thecompanystore.com, walmart.com)

Weighted blankets.
These can deflect anxiety and stress. “The heavy feeling of a weighted blanket can be calming and help a person feel safe and comfortable,” says Cecchi. (amazon.com, gravityblankets.com, sensacalm.com, sleepnumber.com, walmart.com, yaasa.com)

Heated blankets or vests.
“Many patients with neurologic conditions have trouble regulating their temperature,” says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center at the Perelman School of Medicine in Philadelphia. This is especially true for people with MS, ALS, and Parkinson’s disease. Blankets and vests help stabilize body temperature. (amazon.com, ororowear.com, walmart.com)

Support wedges.
“Typically, people with Parkinson’s disease have a stooped or forward-flex posture that puts strain on their muscles,” says Chelsea Richardson, PT, DPT, a board-certified neurologic clinical specialist and clinical director at Re+active PT in Los Angeles. Support wedges, roller pillows, and foam leg supports can relieve the aches and pains. “I definitely recommend them for my patients with lower back pain.” (amazon.com, helixsleep.com)

Blue light glasses.
“Light sensitivity is common after a concussion or stroke,” says Richardson. This is true for many types of light and frequencies, including sunlight and computer screens. By blocking out blue light, the specialized glasses can alleviate sensitivity and headaches. (eyebuydirect.com, felixgray.com, warbyparker.com)

Rocking knives.
“Specialized equipment for the kitchen is always a welcome gift for people with neurologic conditions who love to cook and bake,” says Fox. The rocking knife is designed to cut food with a back-and-forth motion and is perfect for those who can’t use a knife and fork because of tremor or muscle fatigue. A pizza cutter is another option. (amazon.com)

Immersion blenders.
They’re lighter than traditional blenders and require only one hand to operate, so they’re good for those with impaired dexterity. (kohls.com, target.com, walmart.com)

Weighted utensils and adaptive gadgets.
Many kitchen utensils are available in heavier-than-normal models for people with dexterity problems. They can help offset tremors associated with Parkinson’s, Richardson says. Adaptive versions of gadgets like electric can openers, vegetable choppers, and apple slicers get the job done with just one hand, which could be useful for a person with a fine motor deficit. (amazon.com, rehabmart.com, rehab-store.com, specialsupplies.com, thewrightstuff.com)

Adaptive dishes.
Bowls and plates with feet that grip the surface and shapes that make it easier to scoop food are helpful for stroke survivors and others who may have weakness on one side. (amazon.com, ncmedical.com)

Silicone place mats and stabilized cutting boards.
Place mats prevent plates from slipping, and stable cutting boards make chopping vegetables safer and easier. (amazon.com)

The Staybowlizer.
A brightly colored ring-shaped accessory made of silicone, the Staybowlizer holds bowls firmly in place so there’s less tipping or spillage while preparing meals. “From an occupational therapy standpoint, these compensate for extra movement like tremor,” Fox says. (amazon.com, staybowlizer.com)

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Gifts For Daily Living


Electric Toothbrushes Or Shavers.

Since these devices do most of the work, they can be helpful for people with tremor or impaired dexterity. An electric shaver can prevent cuts. (amazon.com)

Squatty Potty.
Constipation is often one of the earliest nonmotor symptoms for people with Parkinson’s disease, says Richardson. The Squatty Potty footstool positions the body optimally, and it comes in newer styles made of Lucite or bamboo. (squattypotty.com)

Raised toilet seats.
“If you have muscle weakness, it may be difficult to stand up from lower surfaces, such as toilets,” Richardson says. “A raised toilet seat promotes independence by allowing people to get on and off the toilet more easily.” (walgreens.com)

Slip-on shoes and accessories.
Brands like Kizik, Zeba, and Billy Footwear offer shoes that are easy to put on—and stylish. A long shoehorn can help with lace-up shoes, and a sock assist makes putting on socks a lot easier. (billyfootwear.com, kizik.com, zebashoes.com)

Compression socks.
These snug yet stretchy items can ease neuropathy, reduce temperature sensitivity, and prevent muscle cramping, says Cecchi. (affordablecompressionsocks.com, bombas.com)

Adaptive clothing.
Tommy Hilfiger, MagnaReady, and Silverts are some brands that make clothing with Velcro closures instead of buttons. “And it really looks good now,” Fox says. (magnaready.com, silverts.com, usa.tommy.com)

Signature stamps.
Signing important documents can be time-consuming and frustrating for people with impaired fine motor skills. Signature stamps can solve the problem. (simplystamps.com, vistaprint.com)

Writing tablets.
Digital notepads are made just for writing (or drawing), not internet and app use, and they easily erase messages. That makes them ideal for people who have trouble speaking but can still write, says Cecchi, who uses one in her clinic. (mobiscribe.com, myboogieboard.com, target.com, walmart.com)

Picture dictionaries.
Many stroke survivors experience aphasia, which impairs all aspects of language—speaking, listening, reading, and writing—and renders communication almost impossible. Picture dictionaries such as This, Please!: The Tourist Picture Dictionary and Point It: Traveller’s Language Kit are invaluable resources, allowing people to point to what they’re trying to say rather than verbalize it. (amazon.com)

Dictation software.
For those who can speak but have difficulty writing, consider this electronic solution. (livevox.com, dolbeyspeech.com, talkatoo.com)

Writing implements.
Weighted pens make writing easier for those with tremors. Writing grips, lined sticky notes, and wrist braces also improve the ability to write. (rehab-store.com, walmart.com)

Voice-controlled devices.
An electronic “virtual assistant” that responds to spoken instructions to play music or turn on and off lights may help with communication and voice modulation, Fox says. (amazon.com)

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Gifts for Getting Around

Canes.
For people with mild walking impairments, a personalized or attention-grabbing cane might be a fun gift, especially if the recipient associates it with more independence or a higher quality of life, says Fox. “It’s important to connect the cane with an added benefit such as getting out to visit a friend.” Some canes even have a built-in GPS navigation system, which can be very handy, says Andrejack. (walmart.com, amazon.com, myrmsstore.com)

Lift chairs and transport chairs and boards.
These are vital but expensive, so consider offering to share some of the cost. But first check with the recipient to see if these items are covered by insurance through durable medical equipment benefits. If recipients already have these devices, make them more personal and fun with light-up wheels, stickers, or monograms for chairs. (amazon.com, sitnstand.com, walmart.com)

Reachers and grabbers.
These devices help access items in hard-to-reach areas, especially for people in wheelchairs or at risk for falling. (amazon.com, carewell.com, myrmsstore.com, walmart.com)

Car-assist handles.
These small, portable levers wedge into the latches of car door frames, making it easier to get in and out of vehicles. (amazon.com, mdmaxx.com, medicalsupplydepot.com)

Car handlebars and car caddies.
These are additional devices that help people get into and out of cars with less effort. (amazon.com, braunability.com, homedepot.com, mdmaxx.com, medmart.com, mobilityworks.com)

Seat lifts.
Combine the gift of a meal at the recipient’s favorite restaurant with a seat lift for the person’s car, says Fox. “Recipients may enjoy the prospect of a dinner more, knowing they can transfer from car to restaurant easily,” she says. (braunability.com, lifewaymobility.com, sitnstand.com)

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Gifts for Fitness

Personal trainers.
If going to the gym is not feasible, book a session with a personal trainer who has experience working with clients who have the same condition as the person to whom you’re giving this gift. Reach out to the recipient’s doctor or physical therapist, if possible, for trainer recommendations.

Gym memberships.
Exercise is crucial for people with neurologic disorders, says Richardson, since it increases dopamine, a neurochemical that affects movement, mood, and coordination. (A loss of dopamine can make exercise difficult due to apathy, muscle weakness, fatigue, or poor coordination.) A gym membership can be motivating, especially when the gift giver commits to going too!

Trekking poles.
“Walking sticks improve stability and posture,” says Richardson. They also can increase arm swing and stride length in people with Parkinson’s disease. (kuiu.com, llbean.com, rei.com)

Fitness trackers.
Being stuck at home during the pandemic worsened symptoms for many of Fox’s patients. A fitness tracker can motivate people to move, indoors and out. Fox suggests including a homemade coupon with the tracker that can be redeemed for setting up the tracker. (apple.com, bestbuy.com, koretrakpro.io, target.com, walmart.com)

Weights.
A set of dumbbells or a floor or hand cycle allows people to exercise at home, which is important for immunocompromised and other vulnerable patients who still may be avoiding the gym, says Fox. Just be sure the recipient doesn’t have a condition that precludes using the equipment, she says. (amazon.com, dickssportinggoods.com, walmart.com)

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Gifts Outside the Box

Electronic or audiobooks.
E-books are lighter and more portable than traditional books, and audiobooks are ideal for people with vision problems. (audible.com, ebooks.com)

Digital music services.
“Music is so important, for everything from movement to mood,” says Fox. Creating personalized playlists or giving a gift subscription to a monthly music streaming service like Spotify encourages exercise, boosts mood, and triggers memories. (amazon.com, apple.com, idagio.com, pandora.com, spotify.com)

Photographs.
“Framed pictures are thoughtful, but for people whose fine motor skills have declined, they can be breaking hazards,” says Cecchi. “Photo albums work much better, or even individual prints of special photos that evoke fond memories.” Creative gift givers could design a digital or printed scrapbook. (mixbook.com, shutterfly.com, snapfish.com)

Homemade coupons.
Create fun coupons with promises to clean out closets, take out the trash, mow the lawn, or cook a meal.

Days of beauty.
A certificate for a haircut and style may be a welcome gift, especially if you help make the appointment and drive the person to the salon.

Meals.
Bring over takeout or homemade food for two to save your gift recipient the stress of cooking, and to provide company. Cecchi says, “This can be as simple as just bringing someone a milkshake,” which is both delicious and easy to swallow.

Mindfulness aids.
Meditation and mindfulness can ease anxiety and depression, says Fox. To get friends and loved ones started, consider app subscriptions, adult coloring books, or mindfulness workbooks.

Biofeedback tools.
For Richardson’s patients who have autonomic dysfunction—the body can’t regulate body functions like blood pressure, heart rate, and digestion—she uses a wearable biofeedback device called Lief that makes patients aware of erratic nervous system responses and teaches them corrective breathing exercises. It requires a monthly subscription, and users can return it when they’re done. (getlief.com)

Think Twice

You don’t want to give a gift that’s impractical or inappropriate, no matter who the recipient is. If it’s a person with a neurologic condition, certain gifts may be awkward, best shared privately, or better to be coordinated with the recipient’s physician.

Food treats.
A fruit basket or a box of candy is lovely—unless the recipient has problems with swallowing, as can happen with Parkinson’s disease and amyotrophic lateral sclerosis.

Medication organizers.
Items like dispensers, organizers, or pill caddies might feel impersonal or too condition-focused, says John Andrejack, a professor in New York City who has Parkinson’s disease.

Outings.
Without fully understanding the recipient’s abilities and limitations, you might choose an event or excursion that could be stressful. Talk with the person and make plans together if a trip or a concert seems like a good gift idea, says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center in Philadelphia.

Portable urinals.
“These can be so useful for people with Parkinson’s, but I wouldn’t want to get one for Christmas,” says Andrejack. That would make me extremely uncomfortable.”

Walkers or rollators.
“These gifts can be a bit like giving your mom a vacuum for Christmas,” says Fox. They can be practical, but not personal or exciting. And even though retailers like Amazon and Walmart stock them, many of these devices are better purchased through a doctor’s or physical therapist’s office, where they can be fitted properly.

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Holiday Gift Guide for Those with Neurological Issues

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Holiday Gift Guide for Those with Neurological Issues 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

5 Ways to Answer “How Can I Help”

5 Ways to Answer “How Can I Help”


November 23, 2022 |  By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

In the US, Thanksgiving Day and week are upon us. And we have much to be thankful for. For those within the AE community, we cannot thank all those that care for us, in any capacity, enough! As we round out Caregiver Awareness month and head into a holiday season of joy, peace, and grace, may we all continue to be aware and be thankful for all we have been given. 

Michelle Seitzer founder of Caregiving Advice has graciously offered to let us share her article regarding ways to help those that care for us the most. We hope you find this as informative as we have!

She offers wonderful tips, and many ways caregivers can be cared for!!!

——-

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

During this week’s Coffee Chat—our brand new virtual support group that takes place Mondays at 11ET on Instagram Live—we talked about what kind of help is actually helpful for caregivers, and why it’s so hard to get it.

We first posted this article in February 2020, right before the world shut down. How times have changed since then! But the advice we shared here? It hasn’t changed at all. Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

When caregivers hear these age-old phrases—“How can I help?” or “Let me know if I can do anything!”—our initial internal reaction is STRESS. Because the thought of coming up with helpful tasks feels like extra work, and extra work is something no caregiver wants. We want someone to lighten our load, not add to it!

Now don’t misunderstand: We are generally thankful for the offers. We appreciate that you see our need for help and want to provide it. But we need you to make it a little easier for us. And sometimes, we just need a little more time to think about it! As caregivers, we need to say that. “Thanks for your offer, can I get back to you with some ideas? And can you check in with me in a week if I forget?”

So caregivers, next time someone asks you *THE QUESTION,* refer to these 5 simple suggestions. And if you’re reading this as a person who wants to help a caregiver, thank you for your willingness; we hope you find these ideas helpful!

#1: Bring us a meal.

An oldie but a goodie: make us a meal! Or make a couple of meals for me to stack in my freezer, or send gift cards for GrubHub, UberEATS, or our favorite local pizzeria. Planning meals is often the last thing we want to squeeze into our busy day, which leads to lots of unhealthy dinners like frozen pizzas—or even worse, skipping meals altogether.

#2: Come visit us.

Screen Shot 2021 07 14 at 9.37.57 AM - 5 Ways to Answer "How Can I Help"

Offer to sit with our caree for a few hours while I run errands. Don’t feel comfortable with that? Just stop by for a visit when I’m there (if we’re all up for visitors that day)! Caregiving can be extremely lonely, so it’s a huge help to see friendly faces and welcome visitors! It’s equally as refreshing to have someone take over so I can get a few items checked off my to-do list.

#3: Fill our (gas) tanks.

If you really want to do something of monetary value for us, a gas gift card is always appreciated! There’s a lot of driving involved in caregiving, and it adds up. And financial pressures add to our already heavy caregiving load.

#4: Bring us groceries (treats included).

Screen Shot 2021 07 14 at 9.35.30 AM - 5 Ways to Answer "How Can I Help"

With online shopping now available in almost all areas—and with a variety of pick-up, drive-up or delivery options—this is an easy way to help that makes a HUGE difference!

Think of how much work it is to grocery shop…

It starts with planning: thinking about meals and snacks, then assessing what you need, taking note of what you’ve run out of, and jotting it down.

Then you have to figure out when to go, and depending on your caregiving situation, this can be a logistical challenge. Who can stay with your caree, if they need supervision? Or do you bring the person along, which comes with its own challenges? Some caregivers opt to shop at night when a spouse, partner, or child can stay home with the person you care for—but that often means shopping on tired legs and with a weary mind.

Now that you’ve figured out when to go, you have to drive there, go inside, fill your cart, empty your cart on the belt, load the bags in your cart, bring them out to your car, load them in your car, drive home, bring the bags into the house, then put the groceries away.

And then, of course, make a list of the things you forgot, because that inevitably happens, right?!

When you break down all the steps, you realize how much work is involved—and why it would be SUCH a help for someone to step in on this necessary life activity. (It also makes the case for paying the nominal delivery fee for those services, if you ask me!)

#5: Update others for us.

Offer to update others when something big happens. This one is a little tricky in terms of privacy, but it can still be super helpful.

The key word here is “offer.” Never give updates on my caregiving life without checking with me first. But if you know something big just happened (new diagnosis, a fall, change of living situation or school depending on age, a death or similar big loss/change in the family, etc.), ask me if I could help with letting others know.

Who are those “others?” Those are the people who would love to hear the latest on my caree but don’t necessarily need to hear it from me directly—i.e. my pastor, neighbors, boss/coworkers, friends I haven’t talked to in a while, to name a few.

It’s emotionally exhausting to repeat the same information — especially bad news — over and over again, so having someone offer to take on that task provides a huge sense of relief.

 

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below. 

 

Click here or the image below to subscribe to our mailing list:

subscribe - 5 Ways to Answer "How Can I Help"

Your generous Donations allow IAES to continue our important work and save lives! 

seal - 5 Ways to Answer "How Can I Help"

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - 5 Ways to Answer "How Can I Help"

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - 5 Ways to Answer "How Can I Help" 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

My letter to Santa.

ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping and you know when I am awake! LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying, or judging. Can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here!

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and worries I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.
Okay, forgot what I was going to say! LOL. Wait, I’ll reread this and write my main point on a sticky note so I can member my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait. Yes. I am back. Got it! My Christmas wish! (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 
This brings me to that favor I mentioned. My Christmas wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your night time snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas wish. 

And when you make your leave, by the way I LOVE that time suspension magic you do- very cool!! 

When your laughter rings out within and around our home, a bit of Christmas Spirit Magic to infuse laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were- well, adding your love and laughter to mine..that’s a powerful infusion! Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps Jim and Matthew. Their laughter helps me. And so it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand, since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

(Originally written on: December 17, 2014)

Your Tax deductible donations help us save lives and quality of lives.

A Bit of Laughter with Your Holiday Cheer!

A Bit of Laughter with Your Holiday Cheer!

 

Smile and giggle along with this rendition of  “The 12 Daze of Christmas”  spoof from the well loved traditional holiday song: The 12 Days of Christmas. You can educate your friends and family about the challenges of fighting autoimmune encephalitis with humor.  We encourage you to go to our Youtube Channel, like it and subscribe. IAES has plans for a video series in 2018 you will not want to miss.

https://www.youtube.com/channel/UCVhWyIHyXO7fTkdpMlY9xBw/videos  

 

Are you stumped as to what to get for that special someone on your gift giving list who appears to have everything? why not give a gift that keeps on giving?  A gift that let’s them know that they inspire you so much that you have made  a donation in their name.  The perfect gift that honors the nature of the recipient as a person who lives their daily life doing simple acts of kindness. https://www.autoimmuneencephalitis.net/make-a-donation

Your Tax deductible donations help us save lives and quality of lives.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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