Thursday, December 12, 2013

KENYA 50 YEARS AFTER INDEPENDENCE






KENYA celebrates FIFTY YEARS of self rule after he end of colonialism, it is indeed a beautiful feeling. The weather today is a bit chilly but scores of Kenyans are out to celebrate Jamhuri Day. The Lord is indeed faithful and it is my prayer that all persons with disability will be fully accepted in the society.

It is about time the Ministry of Health start registering people with disability so that we get the actual figures of those affected with the various types of disability.
Muscular dystrophy is still unknown to the public and most think of it as a mysterious disease, others say someone with MD has been bewitched but there is still hope, hope of infant screening and hope for a cure.

Happy 50th Kenya and to my fellow countrymen/women HONGERA. 

Sunday, November 24, 2013

PRISONERS WITH DISABILITY


PRISONERS ARE PEOPLE TOO.




Prisoners are people too, every time I see this van parked outside our church compound, this question always comes through my mind “How do prisoners with disability cope?” I got the answer on 17th of November when my husband came home from a formation meeting facilitated by Mary Knoll Fathers. The topic of the day was about prisoners and how much is needed in order for all prisoners to be fully rehabilitated so that when released they can re-integrate well in the society.

According to my mobile dictionary Freedom means the state of being allowed to do what you want to do. But if you break the law and you are apprehended and charged in a court of law, the prosecution has to give evidence beyond reasonable doubt that you are indeed guilty of the crime you are charged with. After trial if you are found guilty of the crime the judge will decree that you be incarcerated for a certain period of time and there goes the freedom you enjoyed while you were free to do whatever. In Kenya the rule of Law prevails where an accused is presumed innocent until proven guilty. Freedom comes with a social responsibility.

I remember watching the News one day, it was an expose’ of drug peddling and to the horror of many in the down streets of Nairobi a group of persons living with disability were openly peddling drugs to their clients who seemed to know who they were and where to find them. They were disguising themselves as hawkers. I really felt angry because living with a disability does not give you the ticket to break the law and when caught you start yapping that your human rights are being violated. This brings me to this story that I just read about this young man caught smuggling drugs. story is from the Guardian.


"31-year-old Daniel Roque Hall smuggled drugs. We meet at his mother's house in Kensal Green, west London. Roque Hall, whose father is Nicaraguan, is a bright, handsome man. When he was a child, he was diagnosed with a terrible wasting disease, Friedreich's ataxia, which affects co-ordination and speech; it also causes diabetes and a heart defect that requires constant monitoring. He had a relatively normal childhood, went to a regular school, but by the age of 15 he was confined to a wheelchair. He went to university away from home, studying Spanish and economics, but by then life was becoming increasingly tough as he became more and more dependent.

In 2012, he was arrested for trying to smuggle £300,000 worth of cocaine in the cushion of his wheelchair from Peru through Heathrow. He says he did it only because he was in despair: his condition had started to deteriorate fast, an arranged marriage had been cancelled because his girlfriend's parents didn't want her to marry a man with such poor prospects, and his half-sister had been diagnosed with cancer. Roque Hall, who had no previous criminal record, was in pieces when he was asked to import the cocaine. The judge later accepted that he had been "groomed and manipulated".

Once he admitted guilt, it was inevitable that he would be given a custodial sentence. The only thing that could have kept him out would have been if the prison in question, Wormwood Scrubs, had said it was incapable of dealing with his complex needs. Roque Hall's mother, Anne, believes that was what the judge was expecting, and hoping, to hear; then her son would serve his sentence at home under curfew or in care.

In court it was made clear that the specialists responsible for his care believed no prison was equipped to look after him. His consultant neurologist told the court about the exercises carers need to do with him through the day and night to palliate muscle pain and constant back pain. He also has to stand in an upright wheelchair six or seven times a day, to maintain what muscle capacity he has. At home, he had at least one carer, often two, 24 hours a day. Anne says the judge looked shocked after Wormwood Scrubs insisted it was perfectly capable of looking after her son. "I jumped up and put myself in front of Daniel when the prison officers came for him, and I said, 'You're not taking him anywhere. I want the governor of Wormwood Scrubs in this court to explain exactly how they are going to look after him because it's a lie and everybody knows it's a lie.' They were all looking at me. In the end I knew I couldn't stop him being taken."

When Roque Hall was being processed at the prison, he fell from an examination couch on to his head. He told medical staff he needed to go to hospital after a fall because he was at risk of haemorrhaging, and they suggested he was faking. Instead, he was sent to a care home, where he was surrounded by patients suffering from dementia. Apart from visits to the lavatory, Roque Hall was chained to a prison guard throughout his six days in the care home.

"It was ridiculous," he says slowly, deliberately. Speech is a struggle. "I'm hardly likely to jump out of the window or make a run for it. At one time I went for a shower, so they removed the handcuffs. When I came back, they put the handcuffs on really tight. I said to the lady that they were too tight and they were pinching my skin; I asked her to loosen them and she said, no, that's how it's supposed to be."

Roque Hall went into a diabetic coma when in the care home and had to be taken to hospital. A few days later, he was judged well enough to return to Wormwood Scrubs, where it appeared that the jail was not prepared for him. Although a physio was brought in to show staff how to use his stand-up wheelchair, they refused to because they said they had not received adequate training.

He lost two stone in seven weeks and suffered dramatic muscle deterioration. While in hospital he had been diagnosed with thyrotoxicosis (caused by an overactive thyroid gland), which can cause severe weight loss. Medical staff at Wormwood Scrubs were told it was vital for his weight to be monitored regularly. "You know how often he was weighed in seven weeks?" Anne asks. "Never. And they actually had a written care plan that said he should be weighed at least once a week."

She looks at her son. "After I saw you there, I just went out and sobbed. I was beside myself." He was rushed into hospital, in chains, on 23 August. "When a nurse phoned me about 3am and said he was in intensive care, I simply said, 'Is he dying?' I think she was shocked that I'd said that. She said, well, he's very, very ill. By the time I got down there Daniel was no longer able to speak. He had a whole team of doctors and nurses around him. All he could do was make sounds like 'bleueh bleueh bleueh'. His eyes were terrified. He was emaciated, he had sores on his face, his hair was long. He'd been utterly neglected. What was he doing with sores on his face?"

It was only when his heart started to give up and he was moved to intensive care that his handcuffs were removed.

Anne, an occupational therapist, finds it traumatic to talk about even now. In the end, Roque Hall did pull through, though he spent the next six months in hospital recovering. His heart consultant said he was in metabolic breakdown, due to the thyrotoxicosis not being monitored.

When he came out of intensive care, he found himself in a ward surrounded by three prison guards. He and the guards were then moved to a room. His mother says the lack of privacy was obscene. "I was very involved in his care. I gave him his speech therapy exercises, I fed him, so the prison officers saw a lot of me. Some of them said, 'We can't give him the care he needs, he needs to be at home with his people.' But some would make notes when we talked or when the doctors came in." When Roque Hall and his mother spoke to each other in Spanish, they claim the guards forbade it.

Eventually it was accepted that Roque Hall could not be rehabilitated with the officers in the room; they were moved outside, with the door left open so they could see everything going on. Before long he was talking and making jokes, Anne says: "And I thought, this is the old Daniel."

In February, the appeal court showed "exceptional mercy" and ruled that Roque Hall should be released from prison early after his lawyers argued that the Prison Service could not meet his medical needs. "His admission to intensive care and six months in hospital would have been completely avoidable," Anne says, "if they had looked after him as healthcare staff should, and as I would have done at home, and if they had taken action much earlier, not just when he was on the verge of dying."

Roque Hall's MP, Glenda Jackson, is horrified that he was handcuffed through much of his ordeal. "It's clearly absurd that a man who could never present a physical danger to anyone should be restrained in this way," she says.

Kenya being a country that prison reforms are taking place a lot still needs to be done though.We must not forget though that there are some people who end up in jail yet they were framed or it was a case of mistaken identity and they could not give a strong defense. I was eager to hear more of what they were taught and more specifically about prisoners with disability. What he told me was heart breaking, most prisoners who need assistive devices do not have them and there mobility is greatly affected, the good news though is that Fr. Grol’s Welfare Trust together with CMM brothers of mercy tries to donate wheelchairs, canes, crutches and aids needed by the prisoners.



Man is to error, I know some may say the prisoners with disability deserve to be in the situation they are in; for it is there fault they are in that situation but I say NO because the Bible which I so much believe in tell s me that he who has no sin let him cast the first stone.  Imagine how hard it is for an able bodied person to spend life locked up in prison; how much more challenges will someone who is abled differently face in such a place? Take for instance someone with a muscle wasting condition who needs assistance to stand up from a sitting position, who needs someone or something to hold on to while walking e.t.c.

I challenge you today and all who read my blog to go visit prisoners, some last saw there family members during sentencing and once they got into prison that was it….cheer up someone you never know, you may save a soul.




Friday, November 15, 2013

LIFE IS A JOURNEY

I hope every one is keeping well today, it is indeed a lovely Friday afternoon and I am feeling happy and blessed. The past few months had been tough for my family and I. We lost three close family members in a short span of time and the loss was too much to bare. The Lord is faithful though, today I can afford a smile and a loud laugh.

Ever since I was diagnosed with MD, I was yearning to meet people who had the same condition as me. I started with the Internet and today I can say I have so many friends abroad living with MD and doing great things in creating awareness, raising funds for research and helping those in need of assistive aids.
In Kenya I have also met a good number of people living with MD so I do not feel like I am all alone in this side of the planet anymore.

Life is a journey and every day counts. Just the other day I could do most of the things I wanted to do because my muscles were stronger but today I look back and say THANK YOU Jesus I was able to enjoy my child hood years. We are often advised not to dwell in the past but at times am tempted to break the rule and re-live my yester years one more time but I dare not.
I end my post with a quote from Hellen Keller " Life is a succession of lessons which must be lived to be understood.  















Friday, November 8, 2013

MAKING STRIDES

Over the years a lot of positive changes have been taking place in our beloved country Kenya which we could not enjoy especially if you had a disability. Going to town was a nightmare for me then especially because I had no assistive device to move around and pushing and shoving was the order of the day.

Today I can leave the house and go to wherever I want to go because my wheelchair has simplified my life, there are more parking spaces left for persons with disability. Although the housing sector is yet to comply with the government directive of accessibility, I do believe we are making strides. Job opportunities are opening up for persons living with disability, we even have a cabinet secretary with a disability and members of parliament and senate representing persons with disability. Disability is no longer being regarded as a curse.

There are some conditions that when you have someone will automatically know that you have a disability but with LGMD one has to see you stand up for them to know you have a disability. I was once approached by a lady who saw my sister and I walking holding my hand as we walked slowly, greeting us, she started making gestures with her fingers she wanted to know if I could see. It was tough at first for me to keep answering questions however stupid some sounded; today I can honestly say the answers come more naturally and I do not feel offended when someone asks, "hey what happened? "why are you on a wheelchair?".
Hoping to have a powered wheelchair so that I can regain most of my independence because with the manual wheelchair I still need someone to push me around......

Sunday, November 3, 2013

OUT AND ABOUT



My wheelchair has made my life a little bit easy especially when outdoors.

COMMON QUESTIONS ABOUT MUSCULAR DYSTROPHY

 Over the years I have been asked one question after another about MD and today I am happy to bring the myths to a close. MD is an inherited genetic disorder it is not contagious whatsoever. Here are answers to a few questions about MD.


Frequently Asked Questions about muscular dystrophy
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Who can be affected by muscular dystrophy?
Anyone can be affected. Contrary to popular belief, muscular dystrophy is not exclusively a childhood disorder. While some types of muscular dystrophy are first evident in infancy or early childhood, other types may not appear until later in life.
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How do various types of muscular dystrophy differ?
Specific disorders within this group vary in many ways. Which muscles are involved, the severity of the symptoms, the age at which the symptoms appear, how fast the symptoms progress and what pattern of inheritance the disorder follows are all factors which differ from one disorder to another.
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What are the symptoms of muscular dystrophy?
Depending on the type of muscular dystrophy, those diagnosed can lose the ability to walk, speak, and in some cases, breathe. Principal symptoms include progressive muscle wasting, weakness, and loss of function. In Duchenne muscular dystrophy, there is delayed development of basic muscle skills and coordination in children. Common signs include poor balance with frequent falls, walking difficulty with waddling gait and calf pain, and limited range of movement, obesity, joint contractures, cataracts, frontal baldness, drooping eyelids, gonadal atrophy, and mental impairment (with myotonic dystrophy).
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What causes muscular dystrophy?
Each form of muscular dystrophy is caused by an error in a specific gene associated with muscle function.
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Is muscular dystrophy anyone's fault?
No. Muscular dystrophies are genetic diseases. Forms of muscular dystrophy can be passed on from generation to generation, or they can occur spontaneously in a single individual as the result of a mutation of a particular gene. In any case, they are not anyone's fault. Genetic counseling is recommended for families of affected individuals to ascertain the carrier status of other family members so that prenatal testing can be offered.
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 Is muscular dystrophy contagious?
No. Genetic diseases are not contagious.
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What treatment is there for muscular dystrophy?
There is no treatment to cure muscular dystrophy yet. Physical therapy, exercise, orthopedic appliances (such as braces and wheelchairs), or corrective orthopedic surgery may help to preserve muscle function and prevent joint contractures as much as possible and improve quality of life. Steroids have been used to slow disease progression, but do not affect the final outcome. Identification of the specific genes responsible for the various types of muscular dystrophy has led to extensive research on gene and molecular therapy, but all such treatments are still experimental.
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What can I do to help a friend or family member diagnosed with muscular dystrophy?
If you know someone who has muscular dystrophy, there's a lot you can do to offer help and support. For example:
  • People with muscular dystrophy may need car rides, or help lifting items. For those who are in wheelchairs, helping them make their home more accessible with ramps and wider doorways can be especially beneficial.
  • Those with muscular dystrophy can start to feel cut off from people, as their friends participate in activities they can no longer take part in. Plan activities that include a friend or family member with muscular dystrophy, such as playing board games or watching movies at his or her home. As time goes on, they will be the same person they've always been - just more limited in their physical abilities.
  • Encourage those with muscular dystrophy to visit their local hospitals so that they can be be advised well by the physiotherapist and occupational therapist.

MUSCULAR DYSTROPHY AND EFFECTS OF EXERCISE



Effects of Exercise on Different Muscle Diseases
by Margaret Wahl on April 1, 2009 

Disease category
Nerve or muscle problem
Implications
These are degenerative muscle diseases, meaning the normal ability of muscle to regenerate and repair damage is limited, resulting in a net loss of muscle tissue over time.
Some (BMD, DMD and some LGMD forms) involve fragile membranes around skeletal and/or cardiac muscle fibers.
Many muscular dystrophies (DMD, BMD, some LGMD, EDMD, myotonic MD) involve cardiac muscle deterioration or abnormal heart rhythms.
• Muscle fibers can be damaged by strenuous exercise, and the damaged sustained may be permanent.
• In DMD, BMD and the sarcoglycan-deficient LGMDs, exercise involving eccentric (lengthening) contractions is particularly damaging.
• If the heart’s pumping ability or rhythm is affected by the disease, sudden, strenuous exercise could trigger an acute heart problem, respiratory problem or even death. A cardiologist should be consulted before undertaking an exercise program.
Warning signs of an acute cardiac problem are chest pain, shortness of breath, nausea, sweating without strenuous exercise, a feeling of fullness or pressure in the chest, or a gurgling sound durinig breathing (a sign that fluid may be backing up into the lungs).
Disease category
Nerve or muscle problem
Implications
Nerve cells in the central nervous system (spinal cord and brain) that control muscle movement are lost, leaving muscles “orphaned” and undernourished.
• Theoretically, remaining nerve cells can become overburdened if too much is required of them with exercise.
Inflammatory Myopathies
dermatomyositis, polymyositis
Muscle fibers are attacked by the immune system, causing inflammation and tissue destruction.
• Exercise should vary with disease activity. During severe disease activity, when strength is very poor, assisted or passive range-of-motion exercise can be undertaken. During periods of mild to moderate disease activity, when muscles can work against gravity, light aerobic exercise, isometric strengthening, and active range-of-motion exercise are recommended. When the disease is inactive (in remission), recreational aerobic and progressive resistance exercise are OK.
Disease category
Nerve or muscle problem
Implications
Diseases of the Neuromuscular Junction
myasthenia gravis
Communication between nerve fibers and muscle fibers is compromised, in most cases by a mistaken attack on the neuromuscular junction by the immune system.
• Exercise can be undertaken when the disease is under good control. In periods of acute disease exacerbation, or when the disease is not well controlled, exercise may increase weakness.
• Exhaustion, lasting joint or muscle pain, or shortness of breath means the exercise is too strenuous.
• If on prednisone, mild exercise can help offset side effects, such as weight gain, bone loss, high blood pressure, high blood sugar, depression and anxiety.
Disease category
Nerve or muscle problem
Implications
In CMT, and DSS, nerve fibers and/or the insulation around them are abnormal, compromising communication to muscle fibers.
• Exercise is good for the heart and lungs but will not overcome muscle wasting, which is the result of damage to nerve fibers and loss of input from the nervous system.
• Low-impact exercise, such as swimming or biking, or yoga, is better than high-impact exercise
In FA, an abnormal cellular distribution of iron leads to diminished cellular energy production, with damage to the heart and nerves
• Moderate exercise may help slow the loss of motor skills in FA and help offset weight gain.
• Cardiac precautions apply. No exercise should be undertaken without consulting a cardiologist.
Disease category
Nerve or muscle problem
Implications
Processing of fuel (carbohydrates or fats) in muscle fibers is inadequate, leading to subnormal energy production and/or a toxic buildup of fuel.
• Muscle fibers may break down in an attempt to meet the energy requirements of exercise.
• Do not engage in aerobic exercise that causes the heart rate to exceed 65 percent of maximum (220 minus age, multiplied by 0.65).
• Light resistance exercise, such as lifting no more than 5 to 10 pounds, can help build muscle mass.
• Warning signs to stop are pain, muscle tightness or cramps, exhaustion or cola-colored urine. Seek medical help if urine turns dark.
• If the heart is involved, cardiac precautions apply.
Disease category
Nerve or muscle problem
Implications
Ion Channel Diseases
paramyotonia congenita, periodic paralysis (hypokalemic & hyperkalemic)
Channels in muscle fibers that allow the passage of sodium or calcium are abnormal.
• People with periodic paralysis benefit from good fitness. However, vigorous exercise followed by rest can precipitate a bout of weakness or paralysis. (In hyperkalemic PP, attacks generally occur within an hour of exercising. In hypokalemic PP, they’re more likely to occur the morning after exercise.)
• Low-intensity exercise is best. Some people find they can ward off weakness by cooling down slowly.
• In paramyotonia congenita, muscle cooling can increase myotonia (inability to relax muscles) and transition into weakness and paralysis.
• If swimming, particularly in cold water, paramyotonia congenita patients are at increased risk of an attack and of drowning.
Centronuclear Myopathies
myotubular myopathy, autosomal centronuclear myopathies
Muscle fibers show centrally placed nuclei, in contrast to their normal position, which is around the periphery (edge) of each fiber. Mutations in genes for the muscle proteins myotubularin, dynamin 2, MYF6, amphiphysin 2, and probably others result in weakness, the precise cause of which remains uncertain. Outcomes range from severe weakness affecting all muscles, including those involved in breathing, to weakness so mild it leads only to poor athletic performance.
Because these conditions are not progressive and don’t have specific defects in the muscle fiber membrane that lead to its fragility, exercise is likely safe if the myopathy is not too severe. Check wih your doctor before beginning an exercise regimen. There are no data on exercise for children with severe centronuclear myopathies, such as the X-linked, myotubularin-related type.

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