Balancing Mental Health and Daily Life with Periodic Paralysis
Balance is not just for the body, but also for the mind. It’s not just for your physical health but also for mental wellness.
There’s no shame in getting the help you need from a professional therapist to deal with chronic illnesses.
Everyone’s mental health is different, so it’s important to find the right balance for you. If you’re feeling overwhelmed and need some help, there are many resources available. Such as this helpful article: “It’s not all in my head!” – The complex relationship between rare diseases and mental health problems” from the National Library of Medicine.
It’s okay to not be okay. A lot of people never get the help they need because they are too embarrassed to admit that they are struggling with their mental health.
The stigma around mental health is so strong and it makes it difficult for people to admit that they need help.
But, you don’t have to suffer in silence. There are so many resources and people out there willing to help you. Please consult your medical care provider for more info.
We also recommend reading this article from NIH.gov
Find Your Way Back to Happiness with a Chronic Illness
Do you struggle staying happy while coping with Periodic Paralysis? This article will help you understand what it is like to live with a chronic illness and how to find your way back to happiness.
The author, Lisa Alioto, who is living with a chronic illness, shares her experience and tips on how she manages her condition. She also talks about the importance of connecting with others who are in the same boat as you.
She believes knowledge is a never-ending process. It helps us think more broadly, and can be helpful in solving problems related to other areas of our lives.
We hope you can find relief and inspiration from this remarkable blog post and please, never give up! You’re not alone!
Resilience Skills and Strategies of a Resilient Person
Some people are born with natural resilience, but for those of us who don’t have it, we can still learn it. Resilience is the ability to bounce back from adversity and find success in the face of challenges.
There are many ways that we can build resilience in our lives. And it is important that we do so because resilience can help us in all aspects of our lives, from our relationships to our careers, and even in how we deal with stress or trauma.
We should work on building resiliency as a way of life because it will help us become stronger and more capable human beings.
Read this article on how to build resiliency
Lifestyle Tips that you might find helpful
Clothing and Fashion For Those with Disabilities
Did you know there are two different types of fashion that help those with disabilities? One is Adaptive Fashion and the other is Functional Fashion.
Here’s the biggest difference: Adaptive Fashion is clothing, accessories, and shoes created with, and for people with disabilities and chronic illness. Functional Fashion just so happens to have functional features that support individuals with disabilities, chronic illness, patients, seniors, and caregivers such as elastic pull-on pants, wide neck tops, cooling fabrics, Velcro shoes, and so many more.
Both have great benefits.
With adaptive fashion, designers and patients alike utilize specific fits and features that allow for seated design, easy-on/easy-off elements all of which increase independence, dignity, and comfort.
This type of fashion can also include medical friendly access, sensory friendly, and so much more.
Cienna’s Tip:
We asked an Adaptive Fashion expert and our very own Board Member, Cienna Ditri, where she finds her best outfits. Here’s her list!
These Stores carry adaptive clothing items:
Cienna was recently a featured model in an Amazon Commercial. We’re so proud of her and how she continues to break down barriers around disabilities. Click here to watch it now and see if you can point her out. We’re grateful for her insights!
Cienna is a PPA board member, activist, and patient on her own journey with PPP. She has built a strong social media presence, using her platform to raise awareness for chronic conditions and disability, and build representation of disability in fashion. We're grateful for her insights! Follow her Instagram: @chronicallyperservering
Limiting the Stress of Travel
Have you heard of TSA Cares?
Are you or someone you know traveling using a wheelchair or mobility aid? Learn what to expect next time you fly.
TSA Cares is a helpline that provides travelers with disabilities, medical conditions and other circumstances, additional assistance during the security screening process.
Call 72 hours prior to your travel at (855) 787-2227 or federal relay 711 on weekdays, 8 a.m. to 11 p.m. ET and weekends/holidays, 9 a.m. to 8 p.m. ET.
For more information on TSA’s procedures and to print your own notification card to use at security screening, visit tsa.gov
Clothing Tips When Traveling with a Disability
What about adaptive fashion for when you are traveling?! Check out these easy Seated Fashion Tips:
- High waisted pants are better than low waisted.
- Dresses are easier to use the bathroom in if you can’t stand.
- Crop tops don’t always appear cropped seated, but don’t look as oversized. Give you a shape and waist. They also helps avoid getting fabric stuck in wheels
- Jackets that are cropped or shorter (even winter) fit better seated. The don’t balloon out.
- Blazers and jackets with roll up sleeves, scrunched sleeves are easiest. You can also tuck oversized extra into the seat cushion behind you.
- Remember, you need longer pants when seated than you do when standing.
- Certain backpacks and bags are made especially for wheelchairs.
- Easy on/off shoes or a LONG shoehorn make all the difference! Kizik, Goat Tennis Shoes, Vans, Billy Shoes, and Friendly Shoes are all great options.
Another great tip is to look for “seated” versions of clothing, like seated jeans. They don’t have pockets in the back (they dig into your bum when seated and can give you pressure sores), have elastic in the back, are longer in the legs, fit better in front while sitting, etc.
For a quick search head to Target and JCPenney. They both make some great versions of seated clothing.
Travel can be a trigger for those living with Primary Periodic Paralysis. The change in routine can be stressful which can trigger an episode.
For instance, getting up earlier or staying up later to catch a flight or having to stay up later. To help limit some of the stresses of travel, here are a few tips:
- Try to book flights that do not require you to get up earlier or stay up later than you usually do.
- Give yourself plenty of time to maneuver getting to the airport in hopes that you do not find yourself rushing or stressing that you will miss your flight.
- Pack a snack (or several if need be) to make sure you have the diet you need to be successful. When we travel, we tend to eat foods that we do not have regularly. To have a successful trip, patients should do their best to not eat foods that are not in their regular diet.
- Dress accordingly. If you need to stay warm, you may want to dress in layers and even bring a travel pillow and blanket. If you get too hot, wear loose fitting clothing that is lightweight and breathable.
- Flying in itself can be a trigger for some with PPP due to the pressure change. Following a strict diet days before your flight may be able to keep an episode at bay, during a flight. Get plenty of rest and try not to stress to hopefully set yourself up for a successful flight.
- Be sure to have all your medications for your entire trip ahead of time if possible
Although exploring a new city or place can be extremely rewarding, finding all of the best accessible spots or accidentally finding the places that aren’t accessible can be hard and even put a damper on your trip. Be sure to research ahead of time to make sure everywhere you visit is accessible for you!
Luggage Tips
Do you feel like you have too much luggage but can’t help it? Here are a few tips for finding the best luggage:
Find Wheelchair friendly luggage like this
Duffel bags that can fit on your lap are a great carry-on for wheelchair users.
Wheelchair backpacks make a great personal item. Target has several varieties.
Did you know that some of your luggage may fly for free?
With any medical condition, disability or not, airlines are required to fly some of your items for free. Here is a short list of items:
- Medication Bags and Devices
Any Medical Necessities - Mobility devices
- Service Dog Equipment (also a medical bag)
Cienna’s Tip:
Have you ever had your wheelchair damaged while flying?
To avoid issues and to make sure the airline pays for damage to your gear, here are some tips:
- Take pictures and videos of mobility aids before flying near the gate so it is time stamped and proven at the airport.
- Take pictures of all equipment you are flying with.
- Take your seat off and either put it over head or sit on it while flying.
- Take off all attachable devices like smart drive and store in overhead.
- If broken, take videos/pictures on the jet bridge or near gate for proven time stamp
- Do not leave the airport without filing a claim
- Some of the reporting is time sensitive, make sure you watch for deadlines
- Have your seating specialist or an independent third party access the damage
Cienna is a PPA board member, activist, and patient on her own journey with PPP. She has built a strong social media presence, using her platform to raise awareness for chronic conditions and disability, and build representation of disability in fashion. We're grateful for her insights! Follow her Instagram: @chronicallyperservering
The U.S. Dept. of Transportation (@usdot) has created a Bill of Rights for disabled travelers. Though this Bill of Rights does not create new requirements under the law, it is a tool to be used for those with disabilities to feel empowered and educated on their rights which will hold airlines more accountable.
Remember, EVERYONE has the right to be treated with dignity and respect when traveling.
More Great resources:
Airline Passenger with Disabilities Bill of Rights
Department of Transportation Secretary Pete Buttigieg announced plans for a new rule to allow passengers to stay in their wheelchairs when they fly
