Monthly Online Magazine
By and For those with MS,
June 2008, Issue 105
Tables of Contents
A lot of water has passed under the bridge since my last publication. The last four years have flown by very quickly. My life has incurred changes. Some better and some worse. Life unfortunately cannot be controlled. It is almost an unwritten rule that at some stage it will take its own course and we are powerless to step in front of its wishes. Life is an adventure where every moment counts. That's why we need to make the most of every minute of every day, and ensure none of our time is wasted. I am never going predict the future, my life wasn't as predictable as I thought before the diagnosis of MS, and so I am not going to beat myself up over what could have been.
Sometimes things happen to you and at the time they may seem horrible, painful and unfair, but in reflection you realise that without overcoming those obstacles, you would have never reached your full potential, strength, will power or heart. I suppose everything happens for a reason or purpose. Nothing happens by chance or by means of good or bad luck. Illness, injury, love, lost moments of true greatness and sheer stupidity - all occur to test the limits of your mind, body or soul.
Since my last book Bright Clouds was published there have been a lot of superficial books written on the subject of MS. Unfortunately, some people with a lighter form of the disease have also been responsible for that. I suppose if telling sufferers that the unachievable exertion is possible and it makes vulnerable people happy why should I complain? I only have a bad type and I don’t have to read it! Great that some people have succeeded in managing to live with a lighter form of the disease but please do not try to impose ridiculous beliefs in my direction. Please do not attempt to tell me that I can easily solve my problems with an aggressive form of the disease and keep it under control by Tai chi or some other banal thing like diet. Or that my suffering can be alleviated by diet. Especially as diet has no scientific proof attached to it. In fact no worthwhile research has ever been carried out on diet and MS. Eat healthily but leave it at that please. Diet cannot influence MS. Please do not fill a book with 50 pages on diet! The only thing that you achieve by doing that is wasting the environment’s scarce resources of paper! It is pure unadulterated rubbish. Don’t go on afternoon television advocating the same drivel. These people do a great disservice to all people with aggressive MS or indeed any form of MS. Hopefully some experts with letters after their names will crucify these assertions and distortions in time. I would love to see the dirty little smug faces sorted out. Sometimes it is nice to explain to people the myths and lies that surround this illness. Always search out material that is true and honest. If you want fairytales buy a copy of Cinderella or read something by Cecilia Ahern! At least such fairytales are straightforward fiction. A lot depends on your genetic make up and the type of MS you have. Scientists have claimed genes would have important implications for understanding the disease and ultimately for treating it. The more aggressive it is the worse it is. Primary and Secondary being the worst types. There is no magic formulae with this disease.
My views on religion are still the same! Fanatical zealots of any religion are sick pain-in-the-ass people. They get under my skin and make my flesh crawl. They are so convinced about everything. I am still an agnostic and proud because of fundamentalists like these! After a visit to Uruguay and making contact while I was there with a lady who had seen my book Bright Clouds and was connected with the MS Society (emur) which was founded in 2002. The organisation is young one and needs a lot of funds and resources. She asked me for permission to translate the book into Spanish. I approved it and told her to keep anything from the sale of the book for emur. I was prepared to waive all royalties or any other benefits from the sale of the book. I wanted nothing! As Uruguayans are great readers I was sure it would sell extremely well there. No problem? You must be joking! They gave the task to a religious head case and she refused to translate it because of my religious views! I had thought up to that time in life that a translators’ job was to translate only and not offer an opinion. I still think it is! Apart from that anyone who read the book properly will realise that my views were not arrogant or opinionated. I have never tried to persuade people to be agnostic or atheist. I respected all religious views in the book. Yes I still do have lingering doubts about a greater being. Don’t most people? Even believers have some doubts. I was not stuffing my views down anyone’s throat like this so called Catholic did to me. Her actions were pure stupidity and selfishness from a so called good Catholic! Her own importance outweighed the Society’s need! If something like this highlight how stubborn some Catholics can be I thank Jesus that I am a flexible person but still agnostic! Sweet Jesus keep me away from all religious fruit cakes with self righteous beliefs! This ignorant woman hadn’t even the decency or good breeding or manners to reply to the e-mails I sent her. If that’s what it means to be Catholic you can shove it where the stars don’t shine!
The dawning of the new Health Service Executive (HSE) replacing Health Boards since Bright Clouds was published has had no effect whatsoever! In fact most services have got conceivably worse! Physiotherapy treatment has decreased instead of increasing! Occupational therapists are as scarce as hen’s teeth. All the promises that were made leave a lot to be desired. The HSE claimed that the transition to a unified health structure replacing the old health boards would be of benefit to all. The HSE promised that things would get better under the unified structure, from fighting MRSA to ensuring higher standards in nursing homes or detection of cancer. Nothing happened. Overspending continues as well as downright waste of money in as many ways as possible! The centralised model of the HSE goes against a lot of international trends, such as those in Scandinavian countries. Are they trying to tell me that a country like Sweden has poorer health treatment and facilities than we have? The Minister for Health and Children, Mary Harney has been an utter disaster! Various governments have had plans to shift more resources away from the public health service towards private healthcare even though it is widely recognised that the two-tier health service has failed a lot of people. Especially those who cannot afford private healthcare. In the last year I had two health problems that I will not go into but I would have resolved none of them if I had waited for the public system to sort them out. Both problems were resolved very quickly by going private! People should have a better health system than what they are getting rather than having to resort to private healthcare.
Specialists still live in their ivory towers especially in the public health system. I wanted to go on LDN (Low-dose Naltrexone). A non-toxic treatment that flies in the face of conventional thinking on the underlying dynamic of MS. It enhances the immune system rather than suppressing it. Most conventional MS medicine suppresses the immune system.
Anyway to cut a long story short I asked my specialists assistant to prescribe it for me as I believed it would help my spasticity. The assistant had a word with the specialist who refused to discuss the matter with me! At this stage the patronising assistant asked me did I read a page on the internet about it to which I replied no I just wrote a book on MS! He told me he knew nothing about the dosages of the drug! I educated him by saying 3mg, 4.5mg or 6mg! Now get the f…ing neurologist please! The expert never appeared! Ok there is no published clinical data to support the use of naltrexone in MS. But humour me please and have the manners to see me and acknowledge me. I only have the disease!
I went private and got the drug!! It reduced my spasticity a little. How come it was prescribed to me privately and not publicly? Public healthcare, how are you? What a joke Mrs Harney!
If LDN was licensed in Ireland, instead of an annual minimum medication cost of €12,000 per patient using one of the beta or interferon treatments, the cost would fall to a fraction of this, with a month's supply costing less than €50. There are no published reports of placebo-controlled clinical trials demonstrating the safety and efficacy of LDN. Naltrexone is said to work in MS and other diseases by adjusting the level of endorphins in the body to enhance immune function. This as I stated previously goes against conventional practice. People with MS are advised by most neurologists to avoid any medication, dietary supplement, or other treatment that is touted as strengthening the immune response. However, MS treatments are expensive and earn the drug companies massive profits. Drug companies are motivated by profit rather than ethics and possibly may not be that interested in a cure or alternative cheaper treatment for this disease. None of these drug companies will be bothered to do research in LDN. There is no money to be gained!
Physiotherapy is a well established part of the rehabilitation of peripheral nerve paralysis. I have been making use of physiotherapy since being diagnosed with MS. Something that I have been studying and looking into of late is IMF therapy. Firstly MS is a disease of nerves, not of muscle. So the muscle wasting you get with MS is not due to any abnormality of the muscle itself, but due to an inability of the nerves to tell the muscle to contract and atrophy of the muscles, essentially from disuse. Structural damage to the central nervous system (CNS) has interrupted the control and regulation mechanism of arbitrary motor activity, which causes muscle contractions and the loss of motor activity. Additionally, the patient suffers from impaired sensory ability and difficulty to concentrate and in most cases an ability to perceive and remember things, or plan ahead, suffers.
IMF®-Therapy (Intention controlled Myo-Feedback) is an innovative method in the treatment of peripheral nerve lesions that goes beyond the purely neuro-scientific framework and also takes into account methods and concepts of the psychology of learning. The essential assumption is that things learnt in the past are firmly established in the long term motor memory and can be reactivated by the patient. The aim of this type of treatment is to re-establish arbitrary functions by improving the patients’ active and passive mobility as well as their strength and stamina. Imagining a movement creates a strong urge to carry out this movement. This results in measurable action potentials in the paralysed muscles. IMF®-therapy is based on these results. Whereas conventional rehabilitation methods declare that after two years a patient can no longer benefit from any further treatment, IMF®-therapy is not limited and it is alleged that it achieves further improvement even after several years.
The intention is that the patient practices independently at home. It is a learning method based on psychomotor activity, which uses the IMF Device to send impulses back to the muscle tissue. These impulses have been produced in the patients` cortex due to their visualising movement. The IMF Device, which can pick up and respond to nerve impulses, is the tool that allows the patient to generate greater units of electricity over time. Gradually, function is regained and it is claimed that a total recovery is certainly possible. One stumbling block with this treatment is that it is quite expensive and the only information available on the subject is largely testimonial.
I have not been back to Cuba since my last publication. I lost faith and patience with the Cuban authorities. They are a communist lot of tossers! I have no plans or intentions to return either! Fidel Castro may have stepped down from power but we are basically left with the same dictatorship! His shadow still hangs over the streets of Havana. Raul Castro at 76 was handed the reins of Cuba's government as a caretaker while Fidel recovered. Now, with full recovery looking ever more unlikely (I believe he may be dead!), Fidel Castro 81 has not been seen in public since 2006 when he had emergency surgery on his intestines. Raul has now assumed the top job in his own right. I believe Raul at Cuba's helm will mean a continuation of Fidel's policies. During the early years of the revolution, the younger Castro earned a reputation for being ruthless with his enemies. He was an enforcer who executed hundreds of opponents after his brother’s defeat of the Batista regime in 1959. Older Cubans still see him as a hardliner.
Some minor reforms have taken place since Raul took provisional control in 2006, but the crucial issues of housing, transport, and low pay - raised by Cubans at thousands of government-approved, grassroots meetings across the country last year - have yet to be tackled. Nor has the dual-currency system, which has caused price distortions. Under Raul, import duties on home appliances and car parts have been relaxed, and prices paid by the state to milk and meat producers have been raised, while police have turned a blind eye to a proliferation of private taxis - an indication that the regime is trying to address the grievances of Cubans who are simply trying to make an honest living but are hindered by archaic legislation
After being elected president he quickly dampened hopes of any swift or big change in the western hemisphere’s only Communist state. He inherits a run-down country where the average wage is less than $20 a month, food is short, the housing is crumbling and public transport is abysmal. A country on the brink of collapse.
I have been to Uruguay twice on rehabilitation journeys. I have also been to Tenerife for intensive physiotherapy. Both locations offer a more relaxing environment with fairly decent and uncorrupted police. You feel as if you are not been watched and spied on 24/7. People don’t hang out of you either as if you were a millionaire.
The abuse of disabled toilets and disabled parking spaces is a despicable act. It deprives the people who really need to use the convenience or a parking spot. These are the only toilets or parking spaces that the physically disabled can use and they are few and far between. I did not notice the toilet problem until recently! But in the last year or two I have seen fit and able people amble nonchalantly from disabled toilets in airports, shopping centres and hotels. Barefaced cheek!
Some people are simply too lazy to walk or drive those extra yards to use the normal facilities or parking spaces. It is sad to see people disregarding the purpose of a disabled logo. It selfishly causes inconvenience to people like me should we need to use it. Nothing has changed in the last couple of years as there are still a lot of ignorant people about abusing disabled facilities which in turn are an infringement of my basic rights. Parking spots for the disabled should be monitored more closely with offenders being clamped and frequent offenders going to court and being named and shamed. Only a vehicle displaying a disabled person's Parking Card is allowed to park in a disabled person's parking bay and the vehicle must be parked for the convenience of the permit holder yet people abuse this provision by using the permit incorrectly. For example a family member using the permit to get a handy parking space even though he/she is not personally disabled and are using it for their own convenience
Currently it is an offence to park a vehicle in a disabled parking space unless you have a current, valid Disabled Parking Card. If you illegally park in a disabled parking space, you are supposed to incur a fine of €80, with 28 days to pay. If you fail to pay that fine within 28 days, the fine increases to €120 . It is enforced but not enough. A large number of Gardai and supermarket managers ignore this legal provision. Inspectors in public car parks are still more vigilant as they were four years ago.
Many accessible toilets in pubs and shopping centres are locked. Sometimes it is necessary to lock them due to vandalism and other anti-social behaviour such as drug use by able bodied souls! There is now however a solution which is called a universal key. This key can be purchased from J. Williams (Locksmiths), 12 Bow Lane East, Mercer Street, Dublin 2, Tel:01-4756307.The cot is €22.35(€13.85 plus €8.50 registered post). I have used it on a number of occassions and it works!
All in all my condition has got progressively worse. Not noticeably or intolerably so but worse than it was four years ago. Depression is very common for people with MS. Almost anybody can develop it; it is certainly not a sign of weakness. I have thankfully been able to live and cope without the aid of antidepressants. I am lucky to have friends and family near me to talk to. I also have hobbies to distract me also from difficult thoughts and feelings. Some people with disability problems are not so lucky.
Since my condition has got worse I have relied more on wheelchairs and scooters to get around. As a disabled person you become an easy target for the con-men that deal in these appliances. These cretins are cowboys looking to make a few extra Euros from you. Sadly any of the people I have dealt with have tried to rob me by selling me defective appliances or have offered extremely poor after sales service. Currently I have scooter that has spent more in the workshop than in use! I have been given various advices on keeping it in good working order to no avail! It makes no difference. When I ring them up they keep my waiting on the phone and then usually after 5 minutes they tell me that the new part has arrived and the servicer will give me a ring back later in the day! I wonder do these assholes think that I am mentally as well as physically challenged! The appliance has been faulty since I bought it in 2005! I will gladly give anyone the name of this company if they request the same. I cannot name them here for legal reasons which is a shame! While the above advice is given in good faith, there maybe companies that are trustworthy. However, I am still on the look out for some dealer who I trust explicitly. Until that happens my advice to anyone buying from these people is to use all your paranoid instincts! If you think someone is trying to con you, they probably are! Stand back from the situation and take stock and be careful. Under the doctrine of caveat emptor-buyer beware! I hope that the above personal experience is food for thought in relation to the purchase of mobility aids.
I decided after the publication of my last book to produce my own website. If you have a few moments of free time and nothing else to do why not visit my website http://www.brightclouds.msrcsites.co.uk. The site contains a number of opinions about my illness, some poetry I have written about it, some trips I have undertaken in a wheelchair, music and a few photos. It will not cost you a cent and you might get something from it or at least some understanding to know what it feels like to really have MS and live with it!
Reach Pat by email to comment: firstname.lastname@example.org