Spooniehack

PSP friends - this is a rare one and I've had a request to ask others to chime in if you have this or think you do so that more can connect on this disease.

Progressive supranuclear palsy is a rare brain disorder that affects movement, balance, speech, swallowing, vision, mood, behavior and thinking.

Basically, the nerve cells are damaged in the brain. It sounds simliar to parkinsons in some ways, but of course, not the same.

There is no effective treatment for this, and only symptom management.

👉Do you have any suggestions on how to handle this?!

In the functional medicine realm, since this targets the nerves within the brain, it seems as though these may be worth looking into with a doctor who practices functional medicine.

1. Chelation IVs - many people, especially baby boomer generation have heavy metal toxicity. This can be confirmed through doctor's who practice functional medicine. They'll request a test that tests for Mercury, cadmium, copper, and 10 others via a hair sample. Chelation is when the substance in the IVs attract metals stored in your body and pull it out from your blood, fat cells, and hiding in your organs.

2. Medical marijuana - this is known to help many neurological based diseases like MS, Parkinson's and so forth. Getting the right strain and dose takes time. In our body, we have an endocannabinoid system, how well it works depends on what many factors. The cannabinoids which are THC, CBD, CBN(etc), are what our body recognizes via the endocannabinoid system.

3. Lions mane mushrooms (high quality supplement only. These mushrooms are in capsules. Mushroom wisdom is an awesome company, expensive, but worth it!

4.. Low Dose Naltrexone - check out www.lowdosenaltrexone.org for more information!

#Disability
#CheckInWithMe
#ProgressiveSupranuclearPalsy
#ParkinsonsDisease
#MultipleSclerosis
#BrainFog
#Spooniehack

This can be so complicated because we could have many different causes.

It could be hormone changes, condition, or medication. Are you on gabapentin? That could be a cause, it's actually a side effect that caused mine! However, if it's due to a condition here are a few things to research and look into.

1. CBD or medical marijuana. THC is generally needed for this and works best in reducing tremors. There are hundreds of different strains. It's best to work with a pain mangement specialist or a doctor who is certified that can direct you on a strain for you.

2. You have probably heard how useful omega-3 fatty acids are. One of the things they do is coating of the nerves’ myelin. These acids preserve the health of neurons and eliminate inflammation. Inflammation can worsen the situation in patients suffering from essential hand tremor. People in China have used this plant for hundreds of years when they had problems associated with the nervous system especially in cases of tremors.

This plant is rich in bulbocapnine and alkaloid, compounds that can reduce seizures, convulsions and tremors all over the body. It treats the tension and spasms in the muscles which lead to tremors. It is good to mention that this herb is used for treating some more serious problems like Meniere’s and Parkinson’s disease. Extract, tonic, tincture, pills are some of the form in which you can find Corydalis.

*As always, this is just from personal or friend's experience. Please refer to a doctor before starting something new.

Have you tried high doses of these suggestions, what was your experience?

#Fibromyalgia
#ParkinsonsDisease
#Tremor
#LupusDiagnosis
#SystemicLupusErythematosus
#Lupus
#ChronicPain
#Disability
#Depression
#Spooniehack

I first started struggling with blow drying my hair. Within 30 seconds my shoulders would burn in pain.

Some helpful tips:

1.Pin-up bandanas - These are sooo cute and easy!

2. Rock the bangs - Bangs add some spice to every style

3. Use a travel hair dryer - it's less heavy

4. Wet brush - helps prevent fizz and struggle

5. Braids - keeps your hair out of the way and if you don't move alot when you sleep, could be worn multiple days with a bit of fixing.

6. Teach your s/o to do hair. What a great bonding moment for the both of you!

7. Wear a hat and be sporty with comfy clothes.

8. Curl your hair with a wand. I curl my hair using a wand specifically (got it at walmart 5 yrs ago) and it stays for 3-4 days. Add a hat or throw it up and it hides the oil on day 4.

#Spooniehack
#ChronicPain
#Arthritis
#RheumatoidArthritis
#Lupus
#Depression
#Osteoarthritis
#ChronicFatigue
#DistractMe
#CheckInWithMe

↪️I’ll never be the mom they need me to be.
↪️I’m screwing up my kids.
↪️ I don’t spend enough time with my kids.
↪️How can I take time for myself when I don’t spend enough time with my kids?

↪️I don’t want to be around my kids right now, they are driving me crazy...
UGH - I’m a bad mom for thinking that.

😩I fed them cereal for the 15th time this week.
These are thoughts that ALL parents think, this is normal and we have our own trauma that we're trying to work through.

❗Break thay generational curse, by starting with how you talk and judge yourself because than you act on those feelings anyway towards your child (ren).

Tips:
First, start to recognize when this happens. Ask yourself "why" until you get to the actual reason it's occuring. Do you need to heal from something that is manifesting during these stressful moments?
Are you pushing yourself too much?

Try journaling or making a quick note in your phone when you feel pangs of mom guilt, and over time you'll see a pattern.

Maybe, for example, you realize most of the guilt comes from involvement in activities:

You feel it most when other parents talk about their kids’ adventures.

Or perhaps most of it stems from feeding choices, or your child’s relationship to school and learning.

1. Overcome practices: Choose not to be guilty before it hits - accept you for you. We are human and are not meant to be perfect.

2. Do a mental check of your needs. You don't need to be around your kids 24/7 - you need to nuture your mind and body on your own and by yourself.

Be intentional with self-care (proper self-care) and explain to your children the importance of seperation and healthy living indepdentinly.

This will atually teach them how to develop coping skills.

Write down affirmations and repeat them daily until you start to believe it and show it through actions.

Set aside time to be present so that it's quality over quantity.

#Parenting
#MentalHealth
#CheckInWithMe
#Disability
#AutoimmuneThyroidDisease
#Lupus
#Fibromyalgia
#Spooniehack
#Caregivers
#RareDisease
#Depression

"1. Timer - Give yourself realistic time expectations. Don't over do it.

2. Stand proud -Military style. This position will actually help you hold the vaccum correctly . By doing this, it won't make you overuse or strain muscles that are overcompensating for your weaker muscles.

Also, I've learned if you're sitting often, your muscles are weak, strained, and def not used properly. It makes it even harder to do daily tasks. (I have this problem - I sit alll day for work, I've been doing active, low impact yoga called gravity yoga to help offset this problem and it HELPS SO MUCH).

3. Amazon - The imitation robo(not the brand irobot) is pricy, but it's really worth it. You don't have to do a thing! It works way better.

4. There are tons of triggers of nerve pain. So, working with a physical therapist can help a lot.

a. Stimlate the vagus nerve in your body
Increase dopamine (those with chronic pain have low dopamine. So, increased dopamine = less pain according to many studies)

One of the best nerve pain meds with (no serious side effects short or long term) is Low dose naltrexone too. It's compounded and not widely known because it's generic. Check out more info and talk with your doctor.

www.lowdosenaltrexone.org

5. CBD products. Make sure to buy one from a reputable site that has 3rd party testing to prove it's actually CBD and not other carrier oils.
Also, there are many different types, so find a ratio that works for you.
*As always do your own research and chat with your medical team.
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#Fibromyalgia
#Depression
#Disability
#NervePains
#ChronicPain
#CheckInWithMe
#Lupus
#RareDisease
#Spooniehack

Hey, do you feel more relaxed when your car is clean, but overwhelmed by having to clean it?

Here are some tips that help me preserve my car and not lose limited energy for the day .

Hope it helps!

"1. Clean your windshield wiper blades with rubbing alcohol
2. Sweep the interior instead of vaccuming
3. Put your floor mats in the dishwasher or soak it in the sink with oxyclean and dish soap
4. Squeegee to remove pet hair
5. Olive oil = shiny dashboard
6. Keep your cup holders clean and shiny by putting silicone cupcake liners into them, Easy to wash too. Just soak them in the sink or put them in the dishwasher

#RareDisease
#MyalgicEncephalomyelitis
#ChronicFatigue
#MentalHealth
#Spooniehack
#Lupus
#Fibromyalgia
#ChronicPain
#CheckInWithMe

I found this recipe on a blog awhile back and I find it is ideal on a no spoons/low spoons day and doesn't require an oven or microwave. Also you can customise it to your dietary requirements. It's my go to recipe when I've forgotten to eat lunch or need to eat something somewhat nutritious 😊

Ingredients
1 x Tortilla wrap
Peanut butter/Nut butter/chocolate spread
1 banana
Honey /maple syrup/agave syrup to sweeten (optional)

Spread your wrap with the spread of your choice. Take a peeled banana and with a fork mash it slightly in the centre of the wrap. Drizzle with your choice of syrup to sweeten if desired. Then wrap it up like a burrito (I found an image of wrapping a burrito that demonstrates how to wrap it up) and eat 😊

In Buffalo, it was 94 this past week!! WHAT is going on?!

For the past couple of years due to lupus and NCS I was unable to spend 15+ minutes outside if it was anything over 74 degrees...

Until this year.

I spent an entire afternoon soaking up the sun, laying by the pool, playing tennis (horrible at it, btw), and didn't feel like passing out, vomiting, itchy skin or get a heat rash!

Here are some things that have helped immensely.

1. ThermApparel cooling vest. This is a local, very sma business (Rochester, NY) that received a grant at RIT to create something that helps those with MS who can't stand outside in the heat.
I did a video review on this actually so you can see exactly what it looks like and how it feels on Lupus Health Shops YouTube channel.
Benefits:
🔵It can be covered by insurance because it's considered a DME and it's under the $500 threshold which means a doctor's note should be enough proof for approval.
🔵It prevents nausea, headache, and heat stroke symptoms
🔵The cooling packs can easily be refrozen in as little as 20-30 minutes if placed in a cooler, fridge, or ontop of the A/C fan in your car.
🔵it's unisex fit and is super thin and comfy
🔵It's worn under your shirt so that noone sees it on.
🔵You don't feel cold(common misconception)

Those that found it helpful:
Lupus
MS
Fibro
NCS
POTS
Anyone who doesn't want to drop sweat bullets doing outdoor activities like mowing the lawn.

Cooling scarf: This is another wonderful idea and it's way cheaper.
Benefits:
🔵Cools you down
🔵Can be re-wet anywhere as long as you have access to water
🔵Way more affordable
🔵stylish
🔵 You don't feel wet (common misconception)

Those that found it helpful:
Lupus
Thyroid issues
MS
POTS
Anyone who's hiking or doing outdoor activities

I don't have a specific brand because I prefer the incognito vest, but there are a few nice ones on Etsy to help support small and local business!

Diet change:
This is actually one of my biggest preventative factors for so many of my health issues, but it did take me months to figure out what's best for my bodytype. Just because I went "Paleo" doesn't mean it worked. I had to tailor it to me and then it reallllly kicked in. We're all different and it's best to work with a functional practioner to help.

Oh before I forget - drinking electrolytes first thing in the AM with a giant glass of water helps hydrate you. Another for when you'll be outside.

🔵Nuun, Go Ultima, Drip are all good ones!
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#MultipleSclerosis
#Fibromyalgia
#NeurocardiogenicSyncope
#LupusDiagnosis
#heatintolerance
#Spooniehack
#Parenting
#ChronicFatigue
#Lupus
#LivingWithPOTS
#PosturalOrthostaticTachycardiaSyndrome