May 15, 2017

Cerebral Palsy


Here’s a free collection of resources about Cerebral Palsy- Cerebral Palsy blogs, support groups, first-hand experiences and advice from people who have Cerebral Palsy, etc.

Jump to:


 

Cerebral Palsy Blogs

Here’s a list of Cerebral Palsy blogs- blogs written by people with Cerebral Palsy, or about Cerebral Palsy.

****Email alexbalinski@gmail.com to submit your blog to this list.***

The CP Diary thecpdiary.com 2017

Cerebral Palsy Support Groups

Cerebral Palsy Support Groups On Facebook

  1. Cerebral Palsy Parents Information Group (8395 members)
  2. Cerebral Palsy Group (6886 members)
  3. Adults with Cerebral Palsy Advising Parents of Kids with CP Group (5406 members)
  4. Cerebral Palsy and Related Disorders (5178 members)
  5. Cerebral Palsy Worldwide (4920 members)
  6. Cerebral Palsy Parents Information Group (4640 members)
  7. Cerebral Palsy Just CP Group (4554 members)
  8. Cerebral Palsy UK (3605 members)
  9. Cerebral Palsy Resource Group–Gillette Children’s Specialty Care (1747 members)
  10. Cerebral Palsy Parents Australia (1726 members)
  11. Mild Cerebral Palsy Parent Support Group (1622 members)
  12. Parents of Children with Cerebral Palsy Australia (1220 members)
  13. Cerebral Palsy Group (1126 members)
  14. Cerebral Palsy/Epilepsy Support Group (996 members)
  15. Somewhere to Chat for Family of Children with Cerebral Palsy (942 members)
  16. Cerebral Palsy Support Group (853 members)
  17. Support & Outreach Group For People W/ Cerebral Palsy W/ Combination (719 members)
  18. Cerebral Palsy Ireland Family Group (572 members)

Other Cerebral Palsy Support Groups And Forums

  1. Daily Strength Cerebral Palsy Support Group (168 members, 1,456 posts)

Cerebral Palsy Survey

We’re surveying people about their experiences with Cerebral Palsy. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Cerebral Palsy**


Cerebral Palsy Symptoms

What symptoms have you experienced?

  • Left side weakness, fatigue, migraines. (Sutton, 1 year old)
  • Difficulty walking/standing, pain, discomfort, fatigue, depression. (Steph M., 16 years old)
  • Not reaching my developing milestones. (Greg S., 26 years old)
  • Weakness on the right side, tightness in arm and leg. (Nicole, 28 years old)
  • Muscle tightness/weakness, balance issues, spasticity, back and knee pain. (Kristen, 31 years old)
  • Stiffness, lack of muscle control. (Jaime, 39 years old)
  • Spastic Cerebral Palsy. (Jeff, 43 years old)
  • Walking difficulties. (Jaz, 48 years old)

Cerebral Palsy Facts

What are some facts you’ve learned about Cerebral Palsy?

  • It sucks, other people don’t understand anything about it, it stops me from doing things that other people can do. (Steph M., 16 years old)
  • Each case of CP can vary from person to person. (Greg S., 26 years old)
  • That it can be caused in different ways. (Nicole, 28 years old)
  • That the TBI itself is not progressive, but the cumulative effect of the symptoms affect our condition. (Kristen, 31 years old)
  • You can adapt to it, and still do what everyone else does. (Jaime, 39 years old)
  • Coordination and balance. (Jeff, 43 years old)
  • Our conditions are all different. (Jaz, 48 years old)

Cerebral Palsy Pain Management

What are effective ways to manage your pain (if applicable)?

  • Painkillers. (Steph M., 16 years old)
  • Therapy, stretching, meds. (Sutton, 1 year old)
  • Baclofen, gabapentin, glucosamine and chondroitin. (Kristen, 31 years old)
  • Exercise. (Jaime, 39 years old)
  • Over the counter pain killers. (Jaz, 48 years old)

Cerebral Palsy Difficulties

What are difficult aspects of living with Cerebral Palsy?

  • Walking, fatigue. (Sutton, 1 year old)
  • All of them. (Steph M., 16 years old)
  • Living my life to the fullest. (Greg S., 26 years old)
  • Can’t drive. (Nicole, 28 years old)
  • Pain, lack of mobility. (Kristen, 31 years old)
  • The way people will treat you at times. (Jaime, 39 years old)
  • Dating/relationship. (Jeff, 43 years old)
  • Tiredness, pain, the stares, but most of all, not being able to play with your children. (Jaz, 48 years old)

Cerebral Palsy Advice

What words of encouragement/advice can you share with others who have Cerebral Palsy?

  • I’d like to say “Concentrate on what you CAN do, not what you can’t”, but that’s near impossible. (Steph M., 16 years old)
  • Never give up. Keep trying because we are all of different in various ways. (Greg S., 26 years old)
  • If you fall, just get back up, and keep going. You can either let it knock you down, or make you strong. Stay strong. Also, if things are going badly, they probably won’t stay that way. (Kristen, 31 years old)
  • There are no limits to what you can do. (Jaime, 39 years old)
  • Think of you as a person first, not having Cerebral Palsy. (Jeff, 43 years old)
  • Be better than normal. (Jaz, 48 years old)

Cerebral Palsy Diet and Exercise

What’s been your experience with diet and exercise?

  • It’s difficult, and it doesn’t solve anything. (Steph M., 16 years old)
  • I can exercise some. (Nicole, 28 years old)
  • It’s become more difficult to exercise as my pain level, and mobility has changed, my diet is ok though. (Kristen, 31 years old)
  • Eat good, and stay moving. (Jaime, 39 years old)
  • If in pain, go for massages or yoga. (Jeff, 43 years old)
  • Dieting doesn’t seem to work long term but I have found small changes in my lifestyle leading to some good results e.g. eating more fruit. Exercise gets more difficult as you get older. I try to do some every day, but am always afraid of injury. (Jaz, 48 years old)

Cerebral Palsy Treatments

What’s been your experience with treatments (medication, therapy, etc.)?

  • Therapy has worked wonders!! (Sutton, 1 year old)
  • Physiotherapists give up on me. (Steph M., 16 years old)
  • Good. (Greg S., 26 years old)
  • Botox only worked the first two times- after that, not as effective. Achilles’ tendon release worked, but had to do it three times. (Nicole, 28 years old)
  • It has been difficult to find a good combination of therapies that work, but I think I’m finally there. (Kristen, 31 years old)
  • Swimming, and try a brain game on your phone- it help with muscle control. (Jaime, 39 years old)
  • Physio, massage, yoga. (Jeff, 43 years old)
  • No good experiences. When I was young, got given a lot of new drugs which gave me bad side effects. It was like they were experimenting, trying to get the dosage right- I remember one drug giving me so much pain I couldn’t walk. (Jaz, 48 years old)

Cerebral Palsy Recommendations

Anything you’d recommend for someone with Cerebral Palsy?

  • Live past the label. Prove them all wrong. (Sutton, 1 year old)
  • A wheelchair. (Steph M., 16 years old)
  • Try to not focus on your limitations, and do your best to have fun doing what you can. Keep your weight down, that’ll help with pain. (Kristen, 31 years old)
  • Stay strong. (Jaime, 39 years old)
  • Stay positive. All things are possible. (Jeff, 43 years old)
  • Try everything once. (Jaz, 48 years old)

Cerebral Palsy Resources

What specific resources have you found most helpful?

  • My arms. (Steph M., 16 years old)
  • Online CP support pages. (Kristen, 31 years old)
  • Luminosity. (Jaime, 39 years old)
  • Self help motivational books. (Jaz, 48 years old)

Cerebral Palsy Stories

Share an interesting experience you’ve had related to life with Cerebral Palsy.

  • People are rude to me about it. (Steph M., 16 years old)
  • I can do a lot more than people think. (Nicole, 28 years old)
  • I hadn’t ridden a bike in about 12 years, due to not being able to ride without training wheels. At 24 I decided to get an adult trike. The store I got it from had a grant, where they give one bike away each year to a disabled person who is trying to stay active. They gave it to me! I started riding it at 9 months pregnant, and have rode it for 7 years. (Kristen, 31 years old)
  • Having four girls. (Jaime, 39 years old)
  • I remember parking my car in a disabled spot. In the next disabled bay, a couple had parked a black sports car. We both put our blue badges out. The guy in the car got out and walked towards the entertainment building. The women in the car was the person who was disabled. She was tall, wearing a split black dress (yes, she was fit). We both looked at each other to see what our disability was. She walked with a straight knee so I guessed she must have injured it somehow. We both set off for the entrance, which was a bit of a distance away. Anyway, you guess it, it turned into race. Two disabled people trying to get to the entrance. I think her partner thought it was funny. After about 30 seconds, I gave up, I stopped as I was knackered. She sped off into the distance and all I could think was ‘She’s not bloody disabled!’ What was more interesting was that not only had her partner left her behind and gone ahead, so had my wife. I saw it again one day when I was at a KFC drive through, a man with his two kids headed into KFC, not waiting for his wife, as she tried to catch up. But do you want to hear something even more interesting? My friends have always waited for me. (Jaz, 48 years old)