Friday, September 24, 2021

"CP just takes more energy to exist with"

Cerebral Palsy isn't a degenerative disability, but as with anyone who ages our bodies naturally get weaker, more fragile, and just don't work as well as they did when we were younger.

I started using a walker outside my home in 2016, 5 years ago.  I was 37.  I started taking Baclofen prior to that to help with muscle tightness.  My legs were so stiff that it was really throwing me off balance.  I started getting Botox injections in my foot to help relax my tightly curled toes. And I started doing physical therapy. 

 

Children with CP receive years of physical and occupational  therapy.  We see doctors at children's hospitals who specialize in CP.  But once you reach adulthood that just ends.  As an adult you're lucky if you can find a physical rehab doctor who knows anything about CP.  Or your lucky if your health insurance will even cover 6 months of physical therapy. 

Thanks to @realchelseabear for sharing this interview by @cpalliance about CP and aging.  

link to video

Tuesday, June 22, 2021

Shopping for a car

 I have driven the same car for 20 years, a 2000 Toyota Corolla.  I got it the year I graduated college.  I haven't driven any other car since because my Corolla is adapted for me with AAE (auto adaptive equipment).  I drive with a left foot accelerator and a steering cuff (pictured).  I've loved my car, but it won't last forever and my children have outgrown the back seat.  It was time to start shopping around.  I wanted either a Nissan Rogue or a Honda CRV.   It needed to have an automatic back hatch that would just open with a push of a button and the very back needed to be deep enough for my walker to fit in.  I ended up purchasing a 2017 Honda CRV.  I found a company in Honolulu, Soderholm Mobility that carries and installs AAE.  They were very helpful and thankfully they had a shop here on Maui that is certified to install adaptive equipment.  I also learned through them that if I had chosen to purchase a brand new vehicle that there is a National Mobility Rebate Program through the car makers (Honda, Ford, Toyota, etc.) for up to $1000 rebate towards adaptations. Also, if I was employed and was using my new vehicle to drive to and from my place of work Department of Vocational Rehabilitation may have been able to help with the cost.  I think DVR covered the cost when I purchased my first set of adaptations back when I was a teenager.  

Soderholm Mobility required proof that I was legally able to drive with these adaptations.  It required a doctor's note and a copy of the notation on the back of my driver's license.  I was originally evaluated for these driving adaptations when I was 16 years old by a rehab center.  They had a car with different adaptations for me to test.  

After driving my Corolla for 20 years it's going to take a little time to get used to the feel of driving a CRV.  I am holding on to my beloved Corolla until I am comfortable driving my CRV.   I'm back to practicing in empty church parking lots.  



picture from old vehicle


Monday, June 21, 2021

Laundry

 I was having a conversation today with a friend about how overwhelmed she feels about folding and putting away laundry.  When I told her that I don't ever fold laundry, except for sheets and towels, that all clothes get just shoved into drawers or on shelves she was mind blown .  She couldn't believe that her OCD, organized, Enneagram One friend didn't fold her laundry.  Yep, that's my secret.  Laundry is my worst chore but I hate seeing it sitting around in baskets so I decided a long time ago that folding laundry was a waste of time and as long as it was in a drawer or closed closet where I couldn't see it it didn't matter to me how it was put away, unfolded and inside out.  (I do hang all of my shirts.)  There was a season, when Marie Kondo was popular, that I Kondo folded all the laundry and taught the kids to do the same, but that lasted maybe a year.  My kids have been doing their own laundry since they were little and as long as it's not on their floors or sitting in baskets then I don't care how it looks in their drawers because I don't have to see it.  Sure I may be doing my children's future spouses a disservice but whatever.  


Visible clutter gives me anxiety, but don't look in my closets, drawers, cupboards, or decorative baskets.  I will declutter and organize those spaces once a year or whenever I'm feeling there's something in my life that's out of my control.   Decluttering and reorganizing gives me a sense of control.  Those spaces will stay tidy for a while but it also doesn't bother me when it turns to chaos after a while.    I also have no qualms about throwing things away.

I also don't like sweeping or vacuuming, but having a dirty floor gives me anxiety so I invested in a Roomba.  Problem solved.  I've been applying The Lazy Genius's (@thelazygenius) principles to my life before I even knew about Kendra Adachi  I'm being a genius about what matters to me and lazy about the things that don't.  And having folded laundry doesn't matter to me. 




Wednesday, April 21, 2021

Lashes

 

I have always loved mascara!  If I'm feeling tired or blah, I'll put on mascara, even if it's 4pm and I have nowhere to go.  It's an instant "pick me up".  They give me life.  :) 

When I first started wearing mascara, in junior high or high school, it took some practice for me to be able to apply it.  Because of my CP, I have uncontrolled movement and low fine motor skill function.  I remember "learning to apply mascara" was one of my goals to work on as part of occupational therapy.  I don't remember actually practicing it in OT but I did figure it out on my own, at home, the easiest way to apply: laying down on my stomach on my bedroom floor with my elbow steadied on the floor while looking in a mirror.  Eventually I was able to stand in front of a make-up mirror with my elbow propped up and steadied on the bathroom counter.  

So when false lashes became popular, I wanted the look.  I didn't want to spend the money on eyelash extensions, plus I don't think my crazy reflexes would allow anyone to get that close to my eyes to apply.  I've tried so many different false lashes and just couldn't get them applied.  I am not able to use the tweezer type applicators either because I'd probably poke myself in the eye.   Last year I discovered Thrive Causemetics, Liquid Lash Extension Mascara.  It is awesome!!  It makes my lashes so long, and it removes easily with water.  It's my favorite mascara.  But I was still determined to try false lashes.  I wasn't going to allow my disability to get in the way. 

Moxie Lash, the magnetic eye liner and lashes, kept popping up as an ad on Instagram.  So when I received some money as a gift I decided to splurge.  It's taken some practice, mainly getting the eyeliner on smoothly, but the lashes just "snap" right on.  I can actually apply and wear false lashes now.

But I'm not always able to get the black magnetic eyeliner on smoothly, because of my unsteady hand, so another lash I recently started wearing, and actually like better than Moxie, in terms of ease of application and price is a local brand, "Maka Beauty".  They have a clear eyeliner that their lashes easily adheres to. 

If you're interested in ordering the makaLASH please order through my friend's link: https://maka-beauty-hawaii.myshopify.com/?rfsn=5457429.a54809  or use her code at checkout: MAKAKATBARTHELS
These lashes are reusable, vegan, latex free, cruelty-free, non-toxic, and hypoallergenic.  
 
 
*wearing Maui lashes from makaBeauty,  new glasses too   

 

 


 

(Next up... Shopping for a new car)

Friday, April 9, 2021

Stay Tuned, New Posts Coming Soon

 

 


 

 

I haven't written in a few years.  I don't feel like I have much to blog about in regards to parenting with a disability since my children are older now and more independent (ages 8 and 11).  I've thought about moving over to Instagram and stories, but since I communicate so much easier in writing than I do speaking, I decided to just revive my blog (even though blogging is "old school" now).  I'm working on some new content, not related to parenting but unique to living with CP. 

 

Wednesday, December 19, 2018

SDR Surgery

Selective Dorsal Rhizotomy surgery for patients with spastic cerebral palsy.   Anyone heard of it?

A friend, of a friend, told my friend about it and she told me last week.  The friend's 9 yr old daughter had this surgery and I  guess it improved her life quite a bit. 

I haven't done any research on it but thought I'd pass the info on by posting it here:

https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy

Monday, September 17, 2018

August 31, 2018 - 3rd grade Open House

We went to Kiana's 3rd grade classroom for Open House on Wednesday. There was a wall of portraits that the students had drawn of a family member and I had to find myself based on portrait and description. Kiana makes my heart joyful.
 
Description:
- She was on the news
- She was in Sarah Foley's Veritical Beauty Project
- She is nice
- She is disabled
- She NEEDS chocolate