Monday, October 17, 2016

CP Survival Guide

2,050 words
16 minute read

With winter coming, CP related issues (spasticity, spasticity-related pain, slipping, etc) are at an all-time high.  My sis, Tara (who tweets @TaraJean) came up with the idea for a CP Survival Guide, especially handy for the winter months.  I eagerly jumped in to help and so did our friend K, (who blogs at Transcending CP.)  So, if you have CP, or you have a loved one with CP, check out these recommendations:

Note #1:  These recommendations are not to be taken as medical advice.  We are not doctors.

Note #2:  This is not a sponsored post.

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OILS & OINTMENTS ETC.



Lavender oil (recommended by Tara)

This is one oil we dilute ourselves to use. You can pretty much use any carrier oil to dilute (though you do not HAVE to dilute lavender oil - we choose to as our skin is sensitive). We use olive oil simply because it's cheap. Fill glass bottle with carrier oil, then add several drops of lavender oil. Shake to combine.

To use, spray on tight or painful muscles. Rub in. (Also helps with anxiety!)

Lavender essential oil: $7.85 on Amazon
Olive oil: $4.89 at Target
Glass spray bottles (12-pack): $11.99 on Amazon

(You can do the same with eucalyptus oil, which helps with spasticity.)

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Pain Relief and De-Stress oils (recommended by Tara)

These oils come ready-to-use in cute little rollers. Pain Relief smells light and citrusy, while De-Stress is more herbaceous and almost grassy. These are spendy, but an 8 ml bottle will last for months.

To use, roll on tight or painful muscles.

Pain Relief: $29 at 21drops.com
De-Stress: $29 at 21drops.com

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Mentholatum (recommended by Tara)

If you only take one thing away from this post, know that Mentholatum is miraculous. This ointment is good for everything from relieving intense spasticity to clearing sinuses and sinus headaches! Smells like eucalyptus and menthol.

To use, coat tight or painful muscles liberally.

Mentholatum (1.76 oz): $4.99 at Target

***BONUS: Use all of these things together for maximum relief!***

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Absorbine (or Absorbine Jr.) Back Patch (recommended by me.)

This is particularly helpful for when your spasticity is so bad it is painful.  (Used mostly in winter, but also when tread wears off your shoes and you have pain as a result.)  It says BACK patch, but it is useful on painful heel cords and pelvis in addition to back.  It has a very strong smell (a bit anesthetic + menthol.)  This is helpful because it's a combination of menthol AND gentle heat that lasts consistently for up to 8 hours per patch.  Usually not more than one is needed to resolve a pain issue.

To use: Open package.  Remove patch.  Carefully remove plastic film from adhesive side.  Stick to (unbroken/unburned) skin.  (May want to shave first, depending on if it needs to go on a leg.)  Peel off after 8 hours, whichever way feels most natural, least painful.

Absorbine (or Absorbine Jr.) Back Patch  $1/each at our local dollar store.

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Heated Massager (recommended by K)

My mom actually bought this to relieve back pain, but I found that it works amazingly well to ease tightness in my legs as well...so we have both fallen in love with it. :) I just place it on top of my legs or behind my knees and let it work its magic. I've never been much of a massage person in the past, but my legs feel so much looser after a few minutes of using this. (Side note: foam rollers and muscle roller sticks are also great at easing spasticity!) 

Available on Amazon for $39.99

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Blister Band-Aids (recommended by K)

These were a saving grace for me all throughout college! My CP gait means that I'm prone to developing blisters on my feet, and once I discovered these squishy band-aids, I couldn't live without them. Just apply them over the blister and they provide cushioning that prevents further irritation and helps guard the wound from extra pressure. They might seem a little pricey, but in my experience, they're totally worth it, and they're fairly water resistant, so they stay on even after you've taken a couple of showers. 

$4.29 for a pack of 6 band-aids at Target

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SOCKS & SHOES ETC.



Dr. Scholl's Diabetic & Circulatory Socks (recommended by me)

SO GOOD for cold weather and for NOT waking up with intense spasticity.  Got consistently cold feet and legs?  These babies are SO soft and comfortable, and are knee-length.  Not too thick.  Do not get wet after a day in shoes.

$9.99 for a 2-pack at Target

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Legwarmers (recommended by me)

It's hard to keep your legs warm, especially as the weather starts getting colder.  Legwarmers like these add an extra layer of warmth (great to keep spastic heel cords happy.)

$9.99 at Target

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Adjust A Heel Lift (recommended by Tara)

For those with leg length discrepancies - these lifts are each 1/2 inch thick but layers can be peeled off as needed if you need less of a correction. I wear a size 8 woman's shoe, and the medium size lifts are perfect and fit in most sneaker-style shoes.

Warwick Enterprises Adjust A Lift Heel Lift, Medium (Pack of 4) - $19.45 on Amazon (Size Medium)

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Skechers for Work Women's 76536 Sure Track Slip-Resistant Shoe (recommended by me)

Part of keeping intense spasticity in check is having a good pair of shoes.  The most important feature when you have CP is good tread.  That's why slip-resistant shoes are the best.  (Even better if you can find a pair that is also supportive and lightweight.)  Feel free to include your favorite shoe options here,

Around $69 at Amazon

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KEEN Women's Presidio Shoes (recommended by Tara)

These are super comfy, true to size and supportive and they come in so many colors! (Rare for CP shoes!) While not certified slip-resistant, I do not slip in these shoes except on wet floors.

Available on Amazon from $43.42 - $115.00. (Or at the KEEN website for $110)

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I've had awesome luck with Clarks shoes, and these boots are no exception! I bought a pair in my freshman year of college and couldn't be happier with them. They are very supportive (and I usually do up the laces snugly for even more support), really comfy, and they have excellent traction for icy and snowy days. I can't even count the number of times these boots have stopped me from falling flat on my face. I love how they look, too. :) As an added bonus, since they're waterproof, they can double as rain boots too (I still haven't found CP friendly rain boots, but these worked well for that purpose!). 

In terms of durability, these lasted me about a year and a half of heavy use (i.e., wearing them most days whenever it was snowy, icy, or rainy) before I wore a hole in the right toe, which is usually where my shoes break down first. My CP gait is really rough on shoes, so I was really impressed by how long they lasted, and I immediately replaced them with the exact same pair! ;) 

Available lots of places (Google them!) but the cheapest I saw was QVC.com, $99.98 + $5 S&H

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CLOTHING & BAGS ETC.


IZ clothes (Wheelchair clothing) (recommended by me)

This collection is fantastic, especially if you are in a wheelchair and have CP.  I have worn their shirts (so comfy) and their jeans (which I am wearing in the picture above) are AMAZING.  All their clothes are designed specifically to hang nicely on seated people.  

Clothing comes in Men's, Women's and Ungendered.

*While the main sections are quite spendy, I recommend going to the sale section and browsing there.  Living on a budget, clothing there is much more affordable.

**NOTE (October, 2019)  IZ Adaptive is back!

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Bell Breeze 300 1/2 Fingered Biking Gloves (recommended by me)

In high school, I asked for wheelchair gloves for Christmas.  I don't remember where I got the idea, but my parents got me a pair of blue biking gloves that protected my hands from wheel burn going down steep hills and the giant ramp at school.  When I wore through that pair, I got another, but after high school, the wheelchair glove need fell by the wayside, but the truth is I forgot how necessary they are and how much they help.  These are not bulky, you can feel your rim but you can also spare your hands blisters and friction burn with a simple pair of gloves like these.

Available at Amazon: I think these were maybe $10.

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Sojourner Bags Woven, Fabric Fanny Packs (recommended by me)

These fanny packs are amazing!  Found by chance while looking for a birthday gift for a friend with CP, we ended up getting our own, we were so impressed.  Though it does not look like it, these fanny packs are durable and super spacious.  They can accommodate awkwardly shaped things like accessible parking stickers, wheelchair gloves and so much more.  Fanny packs like these are great alternatives to purses or unwieldy bags, which can throw off our balance, and can allow for independence in being able to carry your own money and personal items.  We have given them as gifts several times over by now, and they are well-received by people with mobility issues due to age or disability.

Available for $18.99 each with Amazon Prime.

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Quilted Knapsack (recommended by K)

This knapsack has been a lifesaver for me! Purses are difficult for me to keep on my shoulder and I like to keep both hands free whenever possible for balance. I bring this quilted knapsack/backpack along whenever I go out with my friends, and I've also used it for work and trips to my college dining hall. It has a magnetic button closure, a drawstring tie, and several pockets and zippered pouches so that I can securely carry my wallet, a water bottle, and whatever else I need when I'm out and about.

Several of my (able-bodied!) friends have gotten a knapsack of their own after seeing how handy mine has been. :) The brand of this particular knapsack is Tinsley Blake, but I don't think it's in production anymore (I found it at a thrift store for $5 many years ago). However, I've seen many similar quilted knapsacks that work just as well (Vera Bradley knapsacks are nearly identical to this one, but I know there are lots of less expensive alternatives too!). 

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EQUIPMENT:



Fetterman Tornado Rain Tips (recommended by me)

These crutch tips have been lifesavers, as my crutches originally came with very ordinary crutch tips that did not do much to prevent slipping.  These not only make me feel more secure when walking but they also rotate with your movement so they are easier on your shoulders.  I tried the plain Fetterman tips and quickly upgraded to the rain tips because of the added security.

Available on Amazon for $49.95

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Folding Shopping Cart (VersaCart) (recommended by Tara)

Do you struggle to carry grocery bags, or laundry from place to place?  The VersaCart not only provides plenty of room for multiple grocery bags (or a giant laundry bag + detergent) it is water resistant, and has a cover to ensure your items will not get wet.  Instead of having your balance thrown off by large bags, the VersaCart allows you a place to store them AND stability to help you keep your balance. Easily assembled, collapsible and lightweight!

Available at Amazon for $69.95

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I didn't always have a shower chair.  Before I knew such things existed, I made due without them.  In college, I found a simple bench (no back, and insufficient slip-proof "feet").  I found this particular shower chair about 10 years ago, and it is perfect for me.  It's sturdy,  It doesn't move unless I move it myself.  I has handles built into the seat, and also a back rest, which I NEED in the shower.  It's everything I need in a shower chair.  I never worry while I am using it.  I always feel secure, which is pretty amazing, for someone with balance issues in a slippery environment.

Available at Amazon Prime for $44.76

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9 comments:

  1. Hi, I have CP too and sometimes my left hand cramps/gets stiff (sometimes I can't even open it, but that's another story). Anyway, for mild cramps, spasticity (I have Athetoid cp)https://www.amazon.com/Peaceful-Mountain-Joint-Rescue-Gel/dp/B0015WO1I4. I also use tiger balm for muscle aches.
    Katrina

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    1. THANK YOU! This looks AMAZING! If I do try it out, I'll be sure and add it to the guide!

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  2. I just brought this! http://www.qvc.com/EV-Rider- Au tomatic-Folding-Scooter-with- Remote.product.V34516.html?sc= V34516-ISRC I totally recommend for anybody with mild CP that has issues using public transit or going long distances.

    Thanks for all these lovely recommendations ladies! I use quite a bit of these myself already.

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    1. Margot, I'm glad to know you use quite a few of the items on the list. That scooter looks amazing (if not exactly affordable.) But I'm definitely glad you found it and can use it!

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    2. Hi Tonia, Thanks! Yes, I know the price is not ideal but a lot of other ones I saw cost way more.

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  3. Hi Tara

    I am a female adult (57) born with CP. I have led a wonderful full life, and I wish it for others too. I have one daughter and 4 grandchildren. Life is good! peace, love and blessings to you

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    1. Tara's my sister, but thank you for reading! It's great to hear from people with CP, especially those who are older <3

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  4. Hello Tonia, this is really helpful! The girl we hope will be our daughter (8 years old) has spastic diplegia.
    I saw a woman with the same kind of CP
    struggle with a ketchup packet (she got it open with my knife). A little cutter to nip open bags and such will be in our daighters fanny pack. Sodium acetate hand warmers will be there too. Purse hook, grabber tool to get dropped items easily...
    Thank you so much for sharing your experience with us!
    -colin

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Please feel free to leave a comment. I always love hearing from people. :)