Tuesday, 10 September 2013

It is CMT (Charcot-Marie-Tooth) Awareness Month


Good Morning Peeps,
Well its a quite cool but dry morning here & I am trying to dry some washing but I am doubtful that it will dry.  Reggie, my dog, is sure missing Tia every morning now she's actually started college. We will find out today though what days she has off to home study/work. The class is to be split into 2 teams & they have different days off so 4 days a week the teacher gets a smaller class to teach the art & design too. This way also, it costs me less in paying out for Tia's bus fares (even though it is only £1 each way). I need to know tonight, what days off Tia will get so I can rearrange Tia's genetic blood test..it was supposed to be tomorrow at 4pm but Tia doesn't get home until 5pm & the last appointment is 4.15pm. 
I am having Tia tested to see wether she has got the same genetic condition as me & my eldest daughter, Steph.
For those who are relatively new to my blog -  I have an inherited genetic disease called Charcot-Marie-Tooth syndrome, otherwise known as, Hereditary Motor and Sensory Neuropathy, and I have one of the many types that have been discovered. I am not the only one in my family with this, my dad is the instigator (lol) of it, as we haven't been able to track it down any further back, with 3 out of the 4 children having inherited it.  My eldest sister, my brother & me., with my brother having 2 out of his 4 children (the youngest is too young to test) have it. My eldest sister only had one child & he is fine, our other sister, Carole, could be a carrier & possibly passed it on to her 2 daughters, and in turn they could pass it on to any children they have. The youngest niece is the only one to have children & both are not showing any signs yet but its still early days with them.

September is CMT Awareness Month so it is very apt that I should be telling you about the issues going on in my home & family at the moment.

Progressive detiriation of strength, ability to do the normal stuff of opening jars & tins, turning taps on & off, opening doors with round handles, opening small tablet bottles etc , muscle wasting with nerve damage are the norm with CMT....

Please take a few minutes/half an hour browsing through the CMT website & gain information about the types of CMT through to how it affects every single person quite differently. Me, for example, as I have other different types of health issues I suffer quite badly. My health has got worse quite quickly over the past 7 years. This, I am sure, is from when I got assaulted & pushed off a front door step, fell on to gravel driveway over 6 foot back from the door.... I thought I had broke my leg, but after a trip down to the local small A & E, it was determined that I had badly bruised the back of my bum/top of my leg.  From that "fall" my back started getting a lot worse, with more pain having to start to take serious medication on the lines of Morphine, Codeine & a serious painkiller called Pregabalin along with 1000mg of Paracetamol up to 4 times a day. This only numbs the pain, it doesn't stop it niggling or screaming with pain if I do too much. I have only got to stand & unload the dishwasher or reload it, or even cook something on the hob. I am in agony just after a few minutes of standing & watching or stir the food.  If I go out on my mobility scooter, I am so tired, even a trip to one shop can set me back roughly 3 hours but if I go out & do the main shop I can be so tired that within half an hour of getting home I can be asleep. It depends on the weather too....when its extremely hot for the UK I will do more or less nothing but sleep.  CMT is a progressive muscle & nerve wasting disease and basically I cant get any better, only worse. With so many spinal issues going on, along with the CMT, I reckon I have got, roughly, 6+ more years before I have to have an electric wheelchair... I will not have any strength in my upper arms to propel myself around in a normal wheelchair. The downside? Well it is going to be: having carer's come in more often than the twice a day now, with a lot more care, hoisting into my electric reclining bed, personal care to the intense... all of this I am certainly not looking forward to but these things will have to be done.
CMT is basically a lesser known form of Muscular Dystrophy. Yes, a lot lesser known form, hence the awareness month. Please, lets get the word out about CMT, keep the blue ribbon photo as your profile picture on Facebook, talk about it, Twitter too please (I am not a member of that). Donate if you can afford to... please ;)

CMT United Kingdom
0800 652 6316 or 

text 07790 789008
email: info@cmtuk.org.uk 
 

 Click here please to visit the website














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