Interested in joining the AA Sir

Just a funny little story which happened to me the other day with regards to speech problems with ACM. ( or i have suddenly become fluent in another language ).
I was walking through my local shopping centre when a nice young lady stepped in front of me and asked " would you be interested in joining the AA sir " My reply was supposed to be , I am already in it thanks. Instead it came out as Rinitamldyeal. What the hell is all that about. Lol. This can be quite embarrassing at times but i have now become used to it and have to laugh to myself. This poor girl must have thought i was a foreigner.

Craniocervical malformations can cause speech disorders as a result of paralysis, weakness, or incoordination of the speech musculature, with motor and functional disorders that affect phonation, resonance, articulation, and prosody [46].

Speech, swallowing, phonation, and respiration are functions that may be disturbed in people with Chiari syndrome and syringomyelia. They are part of the rehabilitation realm of the speech therapist. In children, in addition to the functional disorders mentioned above, language development and learning may be affected. Speech therapy has two types of intervention: preventive and palliative.

When a deviation from normal function is detected, even if it is mild, the patient and family members must be informed about the difficulties that may occur as the condition progresses. Reinforcement of swallowing, respiration, vocal tension and reading skills is important to preserve such functions. If no rehabilitation is initiated one problem can lead to another. For example, buccofacial motricity disorders can lead not only to swallowing disorders, but also to chewing and phonation abnormalities. Once the lesion is established, speech therapist interventions are palliative, targeting the areas where dysfunction is identified.

The Pits and the Pendulum

As some of you know, i had Decompression in April 2009. I still have a range of symptoms remaining.I have dizziness and balance issues on a daily basis, most days are bad and some very bad. It is even worse when i change the position of my head. The only way i can describe it is, it feels as though the cerebellum is like a pendulum, it is constantly swinging slowly, i move my head and it causes it to swing even more ( the Pendulum part of the post title ). On the really bad days i get bad fatigue with it also. I still get the occasional headache which causes one of my eyes to droop as well as my mouth. on my very bad days i have to use a stick to aid my balance as walking becomes a problem, My speech becomes very slurred also. The other day i went into my local shop, without my walking stick and was having a very bad day. I could hear the shop owner and a customer saying how disgusted they were that i was drunk so early in the day (little do they know).This has, along with the issues fighting to get the Benefits to listen has given me depression, yet more medication ( hence the pits part of the post title).
I went back to my GP in September to ask him to refer me back to my Neurosurgeon. Come February this year i still had not heard anything. I called the NS secretary and she told me that they had not received a referral letter from my GP ? She also told me that the NS had just had Major surgery himself and would not be returning until June this year and then it would only be for consultation and not surgery. She told me that he would not be offended if i wanted to see someone else. I returned back to my GP and asked why he did not send a referral letter. He said it was most likely the Receptionists fault. I asked him to refer me to the Walton Clinic in Liverpool and he told me it was not that simple ( bureaucratic) was his words, and that he would have to write to my current NS and that he would then have to write to the Walton centre. Of course i took this as gospel, what did i know i am not a doctor. I called the Walton clinic my self to ask if this was true to which they replied no. Off again to my GP and this time i was very blunt with him and instead of asking, i told him to refer me. This worked a treat as i am sure he could tell i was not happy. I have now put a formal complaint in to PALS about the conduct of my GP and i am moving doctors.
The dizziness issues have become an embarrassment to me because people look at me funny thinking i am drunk and along with my slurred speech and difficulty trying to find the right words when talking.
I hope that one day someone will listen and help me get rid of these wretched problems.

Formication

Some of you may have experienced the feeling of something crawling under your skin, Itchy skin. I have experienced this for over three years every day and it drives me mad. It feels as though there are ants crawling over my skin which is all over my back, head, face , arms and back. I see on alot of Forums are having people ask if this is a symptom of Chiari / Syringomyelia. It is a symptom of these conditions and it is known as Formication .The experience of formication may sometimes cause feelings of itchiness, tingling, pins and needles, burning, or even pain. When it is perceived as itchiness, it may trigger the scratch reflex and because of this, some people who are suffering from the sensation are at risk of causing skin damage through excessive scratching.
Here is a link to the Wikipedia site for more information

http://en.wikipedia.org/wiki/Formication

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

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.

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.

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.