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Thursday 26 November 2009

Can You Work


If you receive Employment and Support Allowance you will have a Work Capability Assessment to find out if you are able to work.

ESA EXPLAINED

Employment and support allowance (ESA) was introduced in late 2008 for people who have a health condition or disability that limits their ability to work. ESA replaces Incapacity Benefit (IB) or Incapacity related Income Support (IS) for adults making new claims in the UK. Almost everyone who claims ESA will attend a work Capability Assessment (WCA) to determine their level of benefit and any support they need to start work. Over the next few years, WCA’s will also become compulsory for people on IB or IS. Knowing what to expect can help you prepare and feel more confident. read more click on Support forum under General Support

Saturday 21 November 2009

Useless


I miss being the father that i should be. I have to turn my son away sometimes as he often asks me to pick him up, carry him on my shoulders, run along with him. I am tired of giving him excuses like, "daddy cant do that" but why not daddy, " i am not well enough, or daddy has got a poorly head", to which the reply is Oh. Just looking at his little face breaks my heart as he is clearly thinking, but why not daddy. I even have to watch him cry his eyes out because i cant play with him like i should.
My wife takes him round to his nans house and he loves to play which i am grateful for but he thinks i can do the same at home. Its not just the physical element, its also the mental side of it. My wife does not like leaving me alone with him just in case i have a funny turn. I often forget to do certain things and she feels i am not capable of looking after him.
I also feel great sadness when he is invited to certain outings like the other day he was asked to go to the Monkey sanctuary with my wife's family, I could not go due to there being a lot of walking and looking up involved. Just the other day he was invited to his little friends birthday party at the snow dome. All the children had two hours on the snow play, where they could go on the sledges and play in the snow. All the mothers and fathers were there and all were very excited as were the children to get onto the snow. I just stood there and felt broken hearted as my son was led away with all the other parents to play on the snow. he just looked at me as to say, why aren,t you coming daddy. I had to sit in the cafe looking out the observation windows at him playing and he kept looking up at me with those sad eyes. I feel terrible . The last time we went running down the road together was last year pre op and that's when i collapsed in the road. I so wish i was my old self. I feel awful most of the time as i know my wife's family think i am just being lazy. Just today i dropped my wife and son at her mothers and her mother asked why i was not going out with them. My wife explained that we had gone shopping yesterday and that it took too much out of my and i was not feeling very well. I caught the look of my mothering law out of my peripheral vision, rolling her eyes and shaking her head in disapproval. I feel worthless as both a father and as a husband for not being able to do the things i should be able to do with my son and because of the things i forget to do when asked and for not finishing things i should have done by my wife. I sleep on the sofa for which i have done for the last two or more years because of my snoring and sleep apnea which keeps everyone awake. I have sexual problems because of my Syringomyelia so that makes my wife unhappy as she wants another child before she is too old. My wife is constantly shouting at me because of things i forget to do or because i cant do them and because i am not working and we are close to bankruptcy because of this wretched disorder. I keep thinking that maybe my son and my wife would be better off without me, and my wife has suggested me move out but because of financial difficulty i cant even do that.
I bet there are many other sufferers out there who are going through the same thing.

Wednesday 11 November 2009

New amazing weight loss drug, or so it seems


I am writing this in regards to a new drug called Acaiburn. Its not what you think.
Since decompression surgery, i have put on a lot of weight due to not being as active as i once was. I was told by my Neurosurgeon to try and loose weight as this may ease some of my discomfort. I made an appointment with my GP and told him that i needed help with losing weight. He told me that i needed to loose a few pounds and he would put me on a drug that would help me shed those pounds. I did what he said and lost a few pounds. I went back to see him and he said he would not put me on the drug like he said he would. He took my blood pressure and told me it was very high and prescribed me with blood pressure tablets and to go back and see him after two weeks. Today will be two weeks and i am due to see him later today.
I had stopped smoking for twelve months prior to decompression and have now started again due to stress in my relationship and to also try and suppress my appetite ( i know this is not the answer, but i needed to try something).
I was now desperate so i googled for a weight loss program. I found a new break through in weight loss, or so i thought. It was a website entitled " how i lost 5 stone 4 pounds in under 15 weeks. It is a story of a woman who combined a new wonder drug called Acaiburn and a drug called colon cleanse. The weight had dropped of her in weeks. It sates that she had found a way of ordering a two weeks course of both drugs for free. It gave a link with a code to enter in order for you to get these free trials. I went along with this and ordered my free trials of both drugs. I had to pay postage and packing which only cost me $9.00. I received the drugs within two weeks and started the course in the way she explained.
I received a bank statement yesterday and found that £74.00 had been taken from my account by a overseas company. I rang the bank immediately and asked what this was. The lady from the bank told me that there was another amount of £54.00 taken from the account that day from the same company and another £54.00 the day before. This is a scam where there is a hidden subscription that is not mentioned. The lady from the bank said that the company is known to their fraud department and that more monies will likely be taken. I now have to wait for a declaration to be sent to me so i can sign it before the money can be refunded back into my account. Meantime this will keep happening. I now face bank charges as this has brought me over my overdraft limit. I am out of work due to this disorder, i am close to bankruptcy and face loosing my home. I have been hanging on by the skin of my teeth and this has happened.

PLEASE BE AWARE OF THIS SCAM, IF YOU ARE DESPERATE TO LOOSE WEIGHT.

The web address to avoid is http://loseweight-quickly.co.uk/amysdiet.php.

Don't Be fooled.

Friday 6 November 2009

Restless Legs or Myoclonic Seizures


I had been suffering with what i thought was restless leg syndrome, (even though i had not been diagnosed with it). It started approximately three years ago, about the same time as i was starting to have symptoms of Chiari,( this was not diagnosed until three years later). It really gave me problems in the evening when i Had settled down in front of the telly for the night. It would feel as though there was a energy building up in the base of my spine and all of a sudden would shoot down my legs, causing a spasm. You could see it in my feet as they would go left and right at a great speed. People who saw it would laugh as it looked so strange. I read up on Restless leg Syndrome after seeing a leaflet in my Doctors surgery, so i just put it down to that. In April this year, straight after decompression surgery, I was lying in the hospital bed and started to get these jerks in not only my legs but now in my arms, legs and head. Again it is when i am at rest. When I am up and about during the day i can feel the sensation in my spine, my arms tense and my fists clench and move up to my forearms . I sit down and my arms and legs will suddenly shoot about. I try to control it but to no avail.
I went to see my surgeon two months post op and he told me they were called Myoclonic Seizures and prescribed me with Lamotrigine which is a drug used to treat Epilepsy. They help to ease it a bit but does not stop it.
Now after a bit of research i have found that seizures may not always relate to the brain itself, but may be caused from the Brain Stem. An interesting find as this may be the reason so many of us have been getting problems with jerks and we have just been putting it down to restless leg Syndrome.

MYOCLONIC SEIZURES

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time.


RESTLESS LEG SYNDROME


Also known as Wittmaack-Ekbom's syndrome, and colloquially as "the jumpylegs" is a condition that is characterized by an irresistible urge to move one's body to stop uncomfortable or odd sensations. It most commonly affects the legs, but can also affect the arms or torso. Moving the affected body part modulates the sensations, providing temporary relief.

RLS causes a sensation in the legs or arms that can most closely be compared to a burning, itching, or tickling sensation in the muscles. Some controversy surrounds the marketing of drug treatments for RLS. It is a 'spectrum' disease with some people experiencing only a minor annoyance and others experiencing major issues.

Thursday 5 November 2009

New Forum


Hi folks
I have opened a forum with regards to Chiari Malformation and syringomyelia called Chiari care . Please click on the link to enter . Please feel free to chat away and to raise any subject with regards to these conditions.

www.chairicare.com

Chatter Box


I have added a chat facility to the side bar of this blog page in order for questions and answers regarding Chiari and associated disorders. Please feel free and chat away.

Tuesday 3 November 2009

Great News


I have just received Great News. A local paper have asked to cover my story in respect of Chiari and Syringomyelia or should i say our story. It will cover myself of course and the problems we are faced with regarding diagnosis and claiming benefits. They will again contact me in several weeks to interview me as they want to cover the full story.
So this is where i ask for your input. Please contact me with anything you would like to add so i can collate it all ready for the release.