Styrke

De der kender Arthur ved, at han er ekstremt stærk. Jeg har egentlig aldrig tillagt dette hans sygdom, men som det for nyligt fremgik i en Facebook tråd i The Hyperekplexia Society, er det måske en del af sygdommen.

Arthur har altid overrasket os med sin styrke. Allerede som baby var han yderst stærk i sin lille krop. I de tidlige noter fra vores sundhedsplejerske, har hun beskrevet denne let overdrevne styrke.

Da Arthur var 7 måneder hev han sig op alle steder, kort efter kravlede han ud og ind de underligste steder.

Da han var lidt over et år, kunne han trække sig op over kanten på sin tremmeseng og en udbryder konge var født!

I vuggestuen opdagede pædagogerne hurtigt, at Arthur kunne lidt mere end de andre børn, men de konstaterede også, at han havde rigtig godt styr på sin egen kunnen.

På byens legepladser kommer Arthur vidt omkring. Da han var halvandet år gammel tog han snildt kravleturen op ad ryggen på Skydebanens papegøje. Jeg har ofte bidt mig selv i læben, for ikke at forbyde ham at kravle rundt alle vegne. Utallige gange har jeg stået nervøs og set på, mens Arthur i fuld kontrol, har besteget nye legeredskaber


I Arthurs nye børnehave undrede pædagogerne sig for nyligt over, at Arthur kunne trække sig selv op i armene, da han var kravlet højt op ad en af stuens metalstolper. For leden, løftede han (i én arm), sig selv op i dørhåndtaget på en cafédør.

Jeg tænker ofte over, hvordan Arthurs fysik og motorik vil udvikles. Jeg ved, at mange med hyperekplexia falder om (ved fuld bevidsthed), når de forskrækkes. Vi ved ikke, om det vil ske for Arthur, men vi håber for ham, at det ikke er en del af hans hyperekplexia. Mange med hyperekplexia har også en særlig gangart og store problemer med stivhed i kroppen. Medicineret synes Arthur på nuværende tidspunkt normal i sin fysiske fremtoning og alderssvarende i sin motoriske udvikling.

Jeg håber, at Arthur fortsat vil kunne bruge sin krop som han ønsker; At han kan deltage på lige fod med andre børn (og voksne) i det almindelige hverdagsliv, særlige aktiviteter og sport.  Og i særdeleshed, at han kan dyrke sport på det niveau han har lyst til - også hvis det skulle vise sig at være på eliteplan (...gad vide hvordan doping reglerne er for Clonazepam?).

Inderligt håber jeg, at mit 'udebarn' aldrig skal møde fysiske begrænsninger - Og at han også en dag, kan vinde over alle de andre, når der lægges arm - Eller blære sig med sin (muligvis) uberettigede six-pack! 

Facebook tråd :) - The Hyperekplexia Society on Facebook :)

Jeg er med i en gruppe på Facebook for folk (eller pårørende til folk) med Hyperekplexia. gruppen er startet af Andrew Lathan, som har Hyperekplexia. Andrew har også lavet denne hjemmeside om Hyperekplexia.

For leden skrev en af gruppens medlemmer denne skønne tråd, som jeg har fået lov til at dele på min blog:

Angela

Let's lighten the mood! Name some perks of having hpx.. I'll go first, you never have to work out, you were born with a six pack!!.

Justin well after much thought, you're a little tougher than everyone else cuz you learn to take pain pretty good... lol                           

Justin well i have had a lot of head injuries, concussions, falls resulting in injury and you just kind of get used to pain because of it, to where if you get hurt it just doesnt seem as bad

Angela Iron man!!! 

Colleen haha..love it! When i was a kid, my brothers used to make bets with their friends that I could beat them in arm wrestling...lol..I always won!

Colleen Another perk....my bros would also have me lay on my back on the floor and lift me up like a board by just my head...lol...I'm 43 and can still do that! :-)

AngelaNice!

Kathleen Thx for that Angela – had a good giggle now! Like your attitude! J

What you can’t change you got to learn to live with & make the most of it, right.

How about having a Hpx high jump competition? J

Justin put us all in a room with a scary movie and see who hits the ceiling first, lol. I took my kids to see that first Paranormal Activity movie and at the end I came out of my seat so high that my kids said it scared them more that i jumped so high than if I hadnt been there with them, and they thanked me for making the ending better!

Janice lovely to see this site having a light hearted moment -- keep smiling and i love the comments, sure Andy will be adding some of his own wit soon :))) keep up the good work all and thanks Angela for making me smile :-)

Andrew We could have keep me up all night meeting, see who will fall asleep first and i always wide awake at night i sure could haunt a house. The good with Hypx that as a guy you get loads extra muscle and dont have to work out. Also i used to play fight my cousins and once i jumped on them they never got up when we used to play fight as kids it was so brill.

Colleen haha..speaking of haunted houses..lol...I walked through a "haunted house" display at Halloween one year with my sister in law. I was behind her, anticipating someone jumping out as I held on tight to her from behind and when someone popped. up to scare us, I took both of us down (literally...we were on the ground laughing our asses off)! lol...I think the anticipation in knowing that we are going to be startled is far worse than a normal person in that situation. it's like you are sitting there just waiting to jump out of your skin. You know it's gonna happen and you also know what your reaction is going to be but you have absolutely NO control over it!

Kathleen The movie thing happened to me too, when I was about 16 – I made about 10 people jump in the row I was sitting in! Sort of like a chain reaction.

I startled in a part of the movie where everything was quite & the tension was still building up & everyone was holding their breath & waiting to see what will happen.

Everyone next to me jumped, which gave me another fright & I jumped again!

Andrew Colleen, I ve took part in one of the Halloween shows in haunted mill, as a scare actor did it for free, i hated horror as a child but decided why not give it ago and be on the other side and it was so fun.

Andrew We should all go on the ride of the Mummy in disney world and see who can startle the most i think it be good or if there scare actors they might STARTLE more then us.

Andrew oh we can sit in a doctor office and wake for them to BANG something on the table, i always know they want to do it so i egg them on.

Colleen not sure how this relates to this topic but Andrew bringing up sitting in the doctor office made me reflect. Have you ever had a doctor test your reflexes by tapping your knee with a rubber hammer??? OMG! My reflexes are extreme! With the lightest tap, I about kick the doctor in the face! Crazy!

Nyt fra Wales

Dr. Rhys Thomas har lavet et interview med Andrew Lathan, manden bag www.hyperekplexia.org  og Facebookgruppen, om Hyperekplexia. Tjek videoen på Youtube.

News from Wales
Dr. Rhys Thomas has done an interview with Andrew Lathan, the man behind www.hyperekplexia.org and Facebook group on Hyperekplexia. Check out the video on Youtube.