Top products from r/CerebralPalsy

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Top comments that mention products on r/CerebralPalsy:

u/libgimp · 1 pointr/CerebralPalsy

Hi

I am in my 30's, grew up in the Philly area and have Moderate Ataxic cp. I have a bachelors, lived on my own at 18 and currently am an author and a consultant.

Early intervention is a great start! I also did therapeutic riding from 3 to 11, huge help! Riding really helped me reach all my early childhood milestones!! I also loved the water-swimming was really great for me

If you're going to CHOP, you may also want to contact AI DuPont. They have a huge CP program that's world renowned. When I was a baby, we started at CHOP, but by three, my mom said I am nevrer going there again with her. (Don't remember any of this) Our family really liked DuPont a lot more in terms of care and they made us feel like I was a child, not just a number for their research. In terms of distance, DuPont was 20 minutes farther but mom said it was an easier drive and parking was no issue at DuPont. So, despite it was farther, it was easier..

Now this was almost 40 years ago, CHOP, I am sure has changed. When I was in CHOP for three days at six months, they still had wards!!! Stuff has changed. I know DuPont has changed, but the same people still run the CP program, whom I love.

You may decide to stick with CHOP, everyone's different. But my parents doctor shopping, that -goes on the long list of things they did right!!

Just know it'll be ok! Most adults w cp wouldn't change it. Realize milestones will come, they may bee delayed but they're come!! Try to take the que from her as to if she wants to do things or not. For example, I went to 'regular' school from 2nd on. After the first year, I never wanted to do field day. I was, and still am, happy my parents let me stay home those days!!! Some adults with CP would disagree and say they're happy their parents made them do every thing just like a typical kid. This really has nothing to do with cp and how you feel one should parent. I think every child is different and should be listened to, not forced to do arbitrary things. That's just an example. Field day could be one of the highlights of your child's year!

You probably want your child to walk. That's Natural. I hope she does. Just know from an adults point of view, walking isn't important. Stress independence, and whatever mode of mobility that will facilitate that!!

PA is ranked top in schools and special ed. I have no idea what your daughter will need. Just know that everyone is different, don't rule anything out! Inclusion is great. But there are kids who do better in special ed settings, every student has their own best plan!! Just keep LRE in mind, students should always be placed in the least restrictive program that they would do well in. The reason why that's vague-is every student is so so so different in what's best for them! When I was preparing to transition to a therapy based pre-school program the district wanted me to go to a program for kids with a higher degree of physical disabilities. Mom fought to get me into a program that was designed for kids with communication delays, which was the right thing. Looking back, I am both glad that I started out in SPED, I am also glad in 4th grade that I started transitioning to REGED. Like many kids, middle school was really hard for me but high school got way better.

So School: take it as it comes, don't rule any option out, realize if something isn't working it can always be changed


The only thing my parents ever did-that I hated was force me to go to sleep away camp for kids with disabilities, awful. They did this twice, first when I was nine. I so wasn't ready, had never even slept at a friend's house yet. I only lasted three days. It was traumatic. And then, when I was almost 14, they made me go back. Everyone there treated me like I was four. It was traumatic. Now, other kids liked it-to me it felt like prison, just not for me. Being in the hospital was more fun.

My mom just always wanted me to make friends with others who were disabled and since I attended regular classes from sixth grade on, she always made special attempts, I always disliked this.. A friend is a friend-disability has zero to do with it!!

As far surgeries-buyer beware. I've had three as a child, all ortho/cp related. (at ages 11, 12 and 15) They really help some kids, but just expect if you do a surgery recovery will be harder/longer then you expect. And with CP surgery might set off other issues. I am not anti cp surgery for kids, just buyer beware

As far as government stuff: The ADA is a federal law that applies to everything, this basically makes businesses more accessible and ensures the same access to public accommodations. The two benefits that families may get is SSI and Medicaid. SSI is a monthly check to help with the child's expenses. Medicaid is government health insurance. Both these are means tested, meaning the parent(s) need to make under a certain amount to qualify. I didn't qualify for either until 18. As a teen I wish I had medicaid, they would have covered more then whatever private insurance I had through my dad's employer.

I want to say it'll be ok, you are awesome for trying to find out as much as you can! Take it as it comes and know every experience is unique!!

I will post some good links below-best to you and your family!

Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)
https://www.amazon.com/Cerebral-Palsy-Complete-Caregiving-Hopkins/dp/0801883555/ref=mt_paperback?_encoding=UTF8&me=
(Good intro to cp, cause right after diagonosis-it can be a lot of new info or terms)

Ceebral Palsy Center: Nemours/Alfred I. duPont Hospital for Children
https://www.nemours.org/service/medical/cerebral-palsy-center.html
(Even if you don't go to DuPont their page has lots of helpful Youtube videos on cp)

  • Reaching for the Stars:
    http://reachingforthestars.org/

    Karen Pape
    http://www.karenpapemd.com/ (Dr. Pape has kind of different ideas than Freeman Miller, who was my doctor, nicest man ever, but never hurts to consider different schools of thought)

    American Academy for Cerebral Palsy & Developmental Medicine (AACPDM)
    http://www.aacpdm.org/

    Alternative Therapies for CP
    http://cpcare.org/treatments/alternative/
    (Never to replace your docs or the tradition 3 therapies of OT/PT/Speech, but if you want to try stuff in addition. Some things you may feel might be worth looking into, others you may feel won't help or don't sound credible.

    Don't get to over whelmed, you do not have to do everything all at once. The period after diagnosis is hard enough-if you feel it's best to stick to early intervention, that's enough. Do whatever works for you! And, never feel you have to have your kiddio in 20 different therapies or you're failing as a parent-not so!!)

    Intensive Suit Therapy
    https://oxfordrecoverycenter.com/suit-therapy/

    Thorncroft Equestrian Center
    http://thorncroft.org/
    (again, if I had a toddler and was going to chose one 'alternative' therapy to add in, it would be ridding, so helped me)

    Wrightslaw Special Education and Advocacy
    http://wrightslaw.com/

    (Lots of good info on how to navigate the school system and get what she's federally entitled to under IDEA, that's the federal law that grants us the right to equal access to a public education, even if she's never in SPED classes)
u/Libgimp2 · 6 pointsr/CerebralPalsy

Hi welcome-

I have cp and am almost 40. I have ataxic cp in all 4 limbs, 80% of those with cp have spastic. Ataxic and Spastic are types of cp. All my life, I classified my cp as moderate, but now, they're getting away from saying mild/moderate/severe and using a scale called Gross Motor Function Classification System (GMFCS). I would be level IV

If types and levels mean nothing to you or are confusing-don't worry that makes two of us! All my life various professionals have thrown around different labels or sub categories about me. While I found most or all of those therapists great and helpful, my type of cp-I've always been who cares.

I have a bachelors degree, am a publisher/author, and can am able to live alone. I walk short distances but mostly use a Manuel wheel chair. Since graduating college, I've worked sporadically but it's been a struggle to find and keep a job.

YES-there is absolutely hope for improvement! Your little girl is only 5mos. That is really too early to know how she'll do yet. It's certainly too early to 'close any doors.' Or say, she'll never.. All you know is if she's diagnosed w cp, her path will probably look a little different. It's ok, not to know 'what to do with that' and feel all sorts of ways, that's normal!

Most of us hit many childhood milestones, it just takes us longer. It is not too early to start 'working.' By that I mean your first goal should be to get her into early intervention for babies birth to three. Talk to your doctor about this-ask what is our quickest path into Early Intervention? What do I need to do to start? Contacting Easter Seals or your states Division of Developmental Disabilities (DDD) would also give you info on how to access Early Intervention services in your area.

Early intervention so helped me improve!! The other thing that really helped me sit, walk, talk etc was starting therapeutic horseback riding at age three! And, I loved it!

You got this! It will be OK! Take each day, year, challenge as it comes and know your little girl will amaze you in ways that you cannot even imagine.


' Below are all resources that I think are great to 'sorta get the lay of the land of cp..'

u/WheeledGnosis · 1 pointr/CerebralPalsy

So, I have spastic diplegic cerebral palsy. Although recently, on a letter of medical necessity, I have a doctor classified my cerebral palsy as quadriplegic. So apparently, that's a thing.

In any case, exercise is often a specter for me as well. I was recently placed on medication to manage blood pressure. It is a slight derivation from normal, but consistently elevated. The medication has managed it so far – but I do not want to be placed on additional medication, if I can help it.

All of this is to say that I went out and got myself an upper body ergometer. If that doesn't sound familiar to you, it's a fancy way of saying "arm bike."

The specific version I got is wheelchair accessible. It is called the [MagneTrainer.] (https://www.amazon.com/MagneTrainer-ER-Mini-Exercise-Bike-Exerciser/dp/B000V53KD8/ref=pd_bxgy_200_img_2?_encoding=UTF8&pd_rd_i=B000V53KD8&pd_rd_r=ANTN3QRQESQS3P7F0098&pd_rd_w=3S7zo&pd_rd_wg=yvlLB&psc=1&refRID=ANTN3QRQESQS3P7F0098&dpID=41ns1qmFnML&preST=_SY300_QL70_&dpSrc=detail)

With the wheelchair accessible stand, and the ergonomic handles – which you may or may not think about getting, as you seem to have hand involvement, more on this in a second – it comes to around $500. Which, admittedly, is not inexpensive. But, on the other hand, it is not nearly as expensive as some handicap specific exercise equipment can be.

And I can verify that it will give you an intense upper body workout. The first time I used it, I was a bit overzealous with the tension, and so afterwards, my upper body felt like so much beaten and raw meat. 😀

But, back to the issue of your hand involvement. You might stick to the base handgrips, as they may be easier to grasp. Alternatively, I had a physical therapist once who liked to use UBEs with people who had cerebral palsy. And she had no compunctions physically strapping hands onto handlebars to support their limited abilities to grasp. So, it's a thought.

Admittedly, I do not know your body. And so, your mileage may vary. However, it feels great to be able to do this kind of exercise. Of course, I would love to be able to do more. Swimming, as you say, is fantastic exercise. However, it also requires someone like me, and from the sounds of it, someone like you, to have people who can assist. Which unfortunately means being dependent on other people. Which can be frustrating, as I'm sure you'll agree.

u/Cyclops75 · 1 pointr/CerebralPalsy

I have a mild form of CP in my legs. I'm male and 24 now so I'm going to try and give you a summary of all the major points I think both she and you'll need to know.

For therapy, push her but realize she may have times when she doesn't like it because its painful and he may resent he's the only one who has to do the extra work. Even at early age fitting in starts to be important. Bribery is your ally here. 10 minutes of stretches per night for a week and she gets a sticker every night, 10 stickers and she gets to go to McDonalds or something.

I never had surgery but I did do casting a few summers. Long-term I'd say it helped somewhat but as a kid all you see is not being able to play as much...and the embarrassment of sponge bathes because you can't shower with the casts on (those waterproof covers are crap, I had to redo a week the first and only time I tried one). Wore AFOs until I was about 17 which I think did help.

I had Botox injections too, they hurt like hell and it'll be hard on all of you for her to be in pain but it goes away in less then 20 minutes.

Now some downsides. As he gets older she'll likely have a period where she resents her disability, including therapy. Fitting in becomes important. Therapist, Doctors etc. are good people who dedicate their careers to helping you. But I realized CP has no cure; all these people career's are to help me 'as best they can'; the unspoken message there is I'll never have legs good enough as everyone else-I am still lesser. I'm better then I was now but I won't lie, age 12 was a hellish time for me.

My parents raised me as nothing special, and I'm grateful for that. But I was forced to use a Walker at school for 6 and a half years starting at age 12. The main reason I was given is it'd help me in crowded hallways. Not even a teenager yet and I looked like a senior. That was 6 and half years of misery everyday, it cleared the halls but also of most people my age-kids that are different don't always have the best time. If she needs mobility equipment start him on it NOW, it'll spare him the harsh transition I had. I dropped the Walker as soon as I finished high school and haven't touched it since.

Be cautious of disability groups; finding people like you to talk with can be great. But I resented them as a kid I never found anyone my age and level of disability, the stress of stares of us in a group increased when I wanted people to look at me less. And I resented the only reason we were put together is because of what was wrong with us. He might be more open to it but if she's not don't force any of those disability day trips on her.

She might be into disabled sports and make friends that way, I wasn't because I couldn't play the 'real' sports with the regular kids at my school, I felt like disability sports were 2nd rate (look at media coverage of Paralympics to regular Olympics to see my point); but if you start her early and nudge her early on she might make bonds with other kids like her that way.

When she's old enough that her friends are getting paper routes, start her volunteering. It'll be a lot easier on her for first jobs that way, getting experience. Personally I'd say not with a disability organization as you don't want the first thing on her resume to be the disability (ableist bias is real). A pet shelter, a YMCA, something where she'll get workplace tasks to complete and feel like she has a shot of being hired.

Far future planning: Think about transit options now. Can she get around daily for work, grocery shopping and meeting friends with wheelchair buses regularly? Does she need hand controls to drive a car? Research how to get those in your area now so you know what to do both practically and financially when the time comes. I'm almost done driving school after a year and a half of government runaround and $5000 not including the car or insurance.

This last one is the most complex...relationships. There's only so much anyone will listen too from their parents on love and sex and I can guarantee the public school sex ed does not help with this. The Walker really killed my self-esteem and it taken me years to self-heal and feel like I'm not bottom of the barrel. Even a lot of therapists don't give advice on this topic. But I will just say The Ultimate Guide to Sexuality and Disability book by Corey Silverberg and 2 other educators was great for me. Get a copy and check it yourselves. When the time is right maybe even give it to a therapist to give to her if she brings up questions like that. Its too much for a 12 year old but knowing I am a valuable partner and can have a good sex/love life then would have really helped. https://www.amazon.com/Ultimate-Guide-Sex-Disability-Disabilities/dp/1573441767/ref=sr_1_1?ie=UTF8&qid=1491612913&sr=8-1&keywords=ultimate+guide+sexuality+and+disability

I'm going to leave two videos and articles here as well. Just so you know what she'll face.

https://www.youtube.com/watch?v=7PwvGfs6Pok

https://www.youtube.com/watch?v=8K9Gg164Bsw

https://www.autostraddle.com/know-me-where-it-hurts-kink-cerebral-palsy-226077/

https://www.autostraddle.com/so-you-want-to-fuck-an-able-bodied-person-authors-submission-heather-has-the-chart-not-the-chart-but-you-know-what-i-mean-341496/

PM for more if you like if you have any questions/concerns.

u/Briannkin · 2 pointsr/CerebralPalsy

It sounds like I may have a bit more milder CP than you (insert normal disclaimer here: I don't know you nor do I know your exact abilities) but I never had the balance to ride a normal bicycle.

For awhile (in my teens when I was a yougin) I used stabilizing wheels like these on a normal bike. It's a fairly cheap option (if you already have a bike) and if you can sit on a regular bike (with like the kickstand down) they should work for you. Be noted, I know the set I had was a complete nightmare to install.

Another option is trikes. Thankfully trikes are much more mainstream now so can even buy them at places like walmart

Of course there are the more expensive options like electric trikes if you feel like you will need some assistance peddling, recumbent bikes if you want an alternate position, or even hand bikes if you feel like your arms may be the more stronger limb.

u/Remus90 · 1 pointr/CerebralPalsy

I have a milder form of CP in my legs. Instantly visble in my walk and curved back. I can move on my own but curbs or stairs with no railing pretty much nerf me unless I have a hand or the walls are close enough together.

I was forced for 6 and a half years starting at age 12 to use a walker at school. It killed my self esteem and I thought no woman would ever want me as you don't grow out of Palsy. At about 17 I had had enough of trying to pretend like it didn't matter. The Ultimate Guide to Sexuality and Disability is written by 3 people, two with disabilities and all sex educators. It has some solid practical information on positions/technique/toys but to me the best part was the emotional healing it gave me even curing some biases I didn't realize I had. Its from 2003 so it doesn't really go into online dating but its tips for meeting people and self-esteem chapter is still very relevant. https://www.amazon.com/Ultimate-Guide-Sex-Disability-Disabilities/dp/B00FFBGURQ

I've had 1 girlfriend for a few months in 2014. Early 2016 I realized I'm part kinkster. Not the 50 Shades crap, the real thing. I went from knowing nobody like me in real life to knowing a guy in a wheelchair, a woman with a service dog and walker, two women with chronic pain problems and one guy with a cognitive condition all in my small local scene. The book has a chapter on 'S/M' sex too and the creativity of it enthralled me. People with Palsy have to be creative to navigate the world that's not made for us. This is great for BDSM. Its not all pain and chains and we are not all warped to enjoy it.

I've been accepted by them bad legs and all and had an amazing Halloween experience where I learned the curved back I always resented feels amazing when candle wax is dripped on it.

If your not into that fine, but I though I'd share my story with you. If you have questions about it or the book I'll be happy to answer. I'll link my first two munches (public dinner) in my local community and my Halloween story where I finally felt good about my body. The Halloween one is long but I think you'll enjoy it. I also know two books on kink and disability if you want the info.

https://www.reddit.com/r/BDSMcommunity/comments/4id7bw/an_exwalker_freaks_review_of_a_munch/?st=ivk5c0mg&sh=87a7dfbe

https://www.reddit.com/r/BDSMcommunity/comments/4ko5jt/an_ex_walkers_freaks_review_of_a_munchpart_2/?st=ivk5c1h8&sh=b8b363c3

https://www.reddit.com/r/BDSMcommunity/comments/58uyti/halloween_2016_the_exwalker_freaks_first_play/?st=ivhi618f&sh=42ab3f60

u/mindfullybored · 1 pointr/CerebralPalsy

This won't help you get the sheets changed, but it may help keep them tucked in. For my sister with CP we have the fitted sheet and the top sheet sewn together at the foot. It really helps her keep her top sheet on the bed for longer.

Also, make sure you're buying fitted sheets that are extra deep, even if you don't have a very thick mattress. Those will go on better. And, if possible, try using sheet clips. Like these: https://www.amazon.com/Original-Sheet-Suspenders-fasteners-Adjustable/dp/B00451BG2G

u/ladybowler423 · 1 pointr/CerebralPalsy

I'd talk to your physical therapist. They are amazing resources. With my CP, it's hard for me to be on top of my boyfriend. I talked to physical therapist and she designed a series of stretches and exercises to specifically address the issue. If you do t feel comfortable talking to your physical therapist about this issue it might be time to switch. There's this book that is helpful when thinking about disabilities and sex. It's wonderful for not feeling alone.

Sex and Disability https://www.amazon.com/dp/0822351544/ref=cm_sw_r_cp_api_fEM6xbVR5C28S

Also available on Kindle

u/fruitjerky · 2 pointsr/CerebralPalsy

I think it would be of benefit for you to consult someone about improving the SEO for the listing.

Here is a link to the listing for those who want to see it.

u/usernameihardlyknowr · 2 pointsr/CerebralPalsy

I used to have this battery operated Waterpik. Might be difficult to replace batteries one-handed, but it's easy to use one-handed. I don't recall it requiring assembly.

u/cripple2493 · 1 pointr/CerebralPalsy

Hey! I'm also an artist - performance artist with a dance based practise :) - at the moment specifically looking at inclusive dance (with able bodied folk).

So, let's answer your questions:

  • A lot of the work by Dan Keplinger (an artist with CP) I'm finding really resonate recently, however in a completely different vein I do really like the work of George Tooker.

    -CP (and disability in general) doesn't get a lot of exposure (to echo those down below) but the whole 'inspiration porn' thing really pisses me off. (see, Stella Young: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much) as well as the idea that disabled people, specifically disabled dancers, should be at pains to hide their impairments.

  • Something real. Just a person with a disability being a person, not a stereotype.

  • My empower comes from reading up on the social model of disability, and the idea that yeah- impairments can suck sometimes, but that doesn't make it inherently wrong. I am not inherently wrong because I have an impairment: I used to look at myself as wrong, and fucked up- but now I look at myself, and even on bad days, I know that I'm ... well, that I'm human. I celebrate my humanity, not the perception of my impairment placed upon me by society.

  • Crip Theory- Robert Mcruer (https://www.amazon.com/Crip-Theory-Cultural-Queerness-Disability/dp/0814757138)

    Disability aethsthetics (https://www.amazon.co.uk/d/cka/Disability-Aesthetics-Corporealities-Discourses-Tobin-Siebers/0472051008)

    And the documentary 'vital signs: crip culture talks back'