About « Terrible Palsy

About

Terrible Palsy has been described as –

A condition in which onlookers and people in the community tell parents how terrible life must be raising a physically challenged child. This condition manifests itself through pity and audible sighing of those around you. Terrible Palsy can be deceiving because you can be asymptomatic for weeks, months, or even years, and then just when you and your family are feeling really good about your child, it can present itself in the form of a condescending pat on the head or a blessing from an anonymous busybody. Best known treatment is to carry a list of snappy comebacks in your pocket or a large bag of peanut M & Ms.

Sometimes, your worst fears – when realised – are not so bad after all. Life changes, but not always in a negative way. This blog is about a family coming to terms with having a child with a physical disability and the journey along the way . . .

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I just wanted to say that you are such a courageous person and I admire you and your family.

Your children are exceptional and beautiful and I share many of your feelings as I am the mother of preemie boys (twins) Sam and Lucas, who were born at 27 weeks. They are now 3-1/2 and are doing very well.

Lucas has mild CP as he had the most challenges (brain bleeds on both sides III/IV, hydrocephalus, PVL) and Sam is a toe walker with sensory issues.

I love them both dearly and couldn’t imagine my lif without them.

I will come back often to see how you are doing.

Keep well!

Eileen

Comment by Eileen — November 28, 2006 #

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I came and read some of your pieces, via Emma’s blog! Copied your Terrible Palsey definition to show a carer tomorrow-she has a disabled husband and we were moaning about the exact syndrome! I shall come back and read some more soon!

Comment by Sarah — January 23, 2007 #

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Ben and Jerry’s works good too : )

Comment by Jodi — February 15, 2007 #

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Right on! I love this. We should share our snappy come backs more. Mine are still underdeveloped!

Kathryn

Comment by Kathryn — March 31, 2007 #

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I am looking for more info on Spastic CP. My Son is a 25 weeker with a three and four IVH. He has PVL and he is almost 2 and he doesn’t have a diagnosis for CP. If he has CP it is very mild.He is almos walking and he has a normal muscle tone but he is on the high end of normal. We have never gotten anything other than that. Please let me know how I can get in touch with you.

Comment by NANCY — May 6, 2007 #

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Hi Nancy,

You might want to consider joining a group like CP Moms – http://groups.yahoo.com/group/cerebralpalsymoms/ . The group is mainly made up of prem mums and if I can’t help you with your queries, someone else may be able to.

Jacqui

Comment by terriblepalsy — May 7, 2007 #

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Hi Jacqui – I read your blog regularly but haven’t announced myself (but now I know you know who reads it) I linked to your blog page through the prem site and it really is gripping reading and my 4yo son likes to talk about your photos and all the fun things your son does with his family. He loves that picture in the header with the blue ride-on.
Kerry
PS – I clicked on that cluster map and my goodness you are reaching a lot of people around the world!

Comment by Kerry — May 18, 2007 #

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I came across your blog earlier tonight and have spent the last couple of hours reading it.

I have Spastic CP myself, and I just wanted to say how I think you have the best attitude for Moo. Yes, he’s got CP, and you carry on as you would with any of your other boys, giving them all just what they need.

Comment by Dawn — July 6, 2007 #

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[...] About [...]

Pingback by Where did ya hide me M&Ms? « Terrible Palsy — August 16, 2007 #

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Just wanted to let you know that your site has been a great comfort. My son Toby who is 3 in November has just been diagnosed with Spastic Diplegia, and after those first few weeks dreading that my son would lead this awful life and never get to do all the things I hoped he would, it’s nice to know that other people out there are getting on with it and living not just existing!

Cant wait to see my boy grow up. x

Comment by Arianna (Toby's Mum — August 18, 2007 #

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Thank you, everything you write is a real eye-opener.

Comment by Lindy — August 23, 2007 #

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Love your definition of terrible palsy. Thanks for sharing the wit. J

Comment by J — October 16, 2007 #

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I would like to tell my story about terrible palsy. I have recently been diagnosed with type 2 palsy. The first time I noticed my palsy was when I was working out at the gym wearing slacks and black dress shoes.
Sincerly,
Matt Lorbert

Comment by Left Eye — January 26, 2008 #

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I plan on doing pattern therapy for crawling before I am able to attend first ABR class.

Why is it that Leonid Blum states that only ABR therapy is used? I can’t see how other movement couldn’t be good.

Also,what areas did you work on the first first?; pressure to the head and the rib cage areas? Is it mouths later that you worked on the intestines?
and kidneys?

Comment by roberta — June 5, 2008 #

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Hi Roberta.

I’m not sure that Leonid says only do ABR. I think it’s more that he wants people to do therapies that are complimentary to ABR and patterning isn’t complementary. Leonid may want to correct me on this but my understanding is that he doesn’t encourage the child to do activities that they aren’t either physically capable of or a willing party to.

I myself do not put my son in positions that display obvious bad structure. It does matter to me not only whether he can do something but also how he does it.

The first areas we worked on were the chest and abdomen but each child is different. Our last set of exercises were for the abdomen, chest, shoulders, c7 and ear cavity.

Hope this helps.

Jacqui

Comment by terriblepalsy — June 6, 2008 #

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Hi Jacqui (I think- sorry, you didn’t leave an email address),
Thanks for your note on my website the other day. In regards to your request to link to my blog page please feel free to do so. If you email me I would be happy to discuss. Kind regards, Rodney Clarke

Comment by Rodney Clarke — July 6, 2008 #

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Hi,
I think your blog is terrific, and I would like to feature you on Wellsphere (http://www.wellsphere.com). Would you drop me an email?
Good health!
Geoff
–
Geoffrey W. Rutledge, MD, PhD
http://medblog.wellsphere.com

Comment by Geoff Rutledge, MD, PhD — September 26, 2008 #

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hi Jacqui – love your terriblepalsy definition. I don’t know where you find the creativity to actually put that in words – I’m too sleep deprived.

I saw on your blog some questions about Anat Baniel and EMG and also noticed you’re in Australia. Drop me a note and I’ll share my experience of them with you.

Cheers, A

Comment by Adrienne — January 23, 2009 #

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