Sharecare4u Blog

By Lara

Distractions as an agenda, that is what I call the long list of health issues that I have lived through.
Distractions. They appear to impede the progress of my life, but I know that this is not so. In fact, there is a purpose to these enforced detours. This is my conclusion since I was not party to how God put me together; the particular combinations that make up my DNA, nor have I been privy to my set of life’s issues. I have been brought here to be trained up by them since most of these things have been arranged without my contribution, I assume they are part of God’s plan to bring about inspirational change. I know that saying debilitating health challenges are for building up character, is counter intuitive, but God does not work in ways that we do.
My further assumption is that He is working on me to build strong faith by keeping my eyes focussed on him. My own strength could never have measured up to face them. I have been able to endure only because I have looked beyond myself to my maker for sustenance and strength.

I sincerely believe God was not mistaken in how he put me together. He knew exactly what he was doing when he ‘knit me together in my mother’s womb’. He knew exactly who my parents would be and he said he made me ‘fearfully and wonderfully’. He also knew who my siblings, husband, children and relatives would be, and added to that formidable force of supporters, a veritable army of friends and well wishers. The combined prayers of these who have been carefully and fearfully scripted into my life, are a testimony to the magnitude of heavenly power.
So mine is to praise Him from my in most being, and continue to live out the purpose of my life. At a minimum, our purpose is to praise Him as is demonstrated in this scripture I stumbled on Isaiah 43:21 ‘This people I have formed for Myself;
They shall declare my praise.’

With every hindrance, my determination to bring praise to God’s name becomes stronger . I become more and more able to trust in the God of all grace, and what He is able to do through me.
Then there is the role that fear plays. God said ‘fearing’ Him is the beginning of wisdom. From this I deduce that there are God intended ways in which fear is to be utilised. Sometimes I am aware that  fear can be used to leverage the release of possibilities that are beyond myself. Mostly fear makes me ‘afraid.’ Yes, in the natural, but beyond that, it is a trigger. Fear draws my attention to an opportunity to shift paradigms, by seeking an opposite or other alternative instead. Such transformation, allows me to transcend my human instincts and apprehend something else. Something deeper, and definitely beyond myself. Something which I think is God himself. A very simple expression of His love, in allowing me this privilege.

So, to read about being fearfully and wonderfully made as written by the psalmist, brings to focus this immeasurable love of God in Christ Jesus. This love that says… I care so much about my creation, I have taken great care in putting it together. On this I depend, regardless of what has happened.

Lara Cookey
Accra
21 Jan 2012

Support for Children with Cerebral Palsy

You can download the flyer here: need-support-cerebral-palsy-children-flyer

Members of Sharecare Ghana today joined the youth service at Accra Ridge Church to talk about autoimmune and neurological conditions and how people can make a difference to the lives of persons with disabilities through sensitive behaviour and attitude.

The theme of the youth for the year was “Do you know God?” and Sharecare’s ‘take’ was to see God’s hand in every situation and use it positively (or to the best of your ability).

Thank you Ridge youth for inviting us and for your donation.

Thank you also to students of Trinity College who invited us to address them last month and gave us a donation.

God bless you all

The Accra Mail, Thursday 8^th December, 2011

The Noguchi Memorial Institute for Medical Research (NMIMR), in collaboration with physicians at the Department of Internal Medicine, Korle Bu Teaching Hospital and Sharecare Ghana, is carrying out a research into autoimmune disease conditions.

The research, which is at the instance of Sharecare Ghana, a registered NGO and support group for people with rare immuno-neurological conditions that include autoimmune diseases and diseases of the central nervous system, is being pre-financed by Ghana Commercial Bank and ProvidentLife Assurance Company Limited.

The main aim of the study is to document the experiences of diagnosed autoimmune disease sufferers and their physicians to better understand the occurrence and management of autoimmune disease conditions. It will involve in-depth key informant interviews with patients and physicians involved in their care and treatment. In all a minimum of 40 patients and 10 physicians are envisaged to be included in the study.

It would be recalled that Sharecare Ghana in 2007 approached the Noguchi Memorial Institute for Medical Research with an enquiry as to whether the Institute was involved in research into why autoimmune conditions and diseases of the central nervous system are on the increase and whether it will consider carrying out such a research, if the Institute had not carried out any such research. A special interest was expressed in the role of nutrition and diet and their effect on these conditions. Though autoimmune diseases research was not one of the institute’s research areas at the time, there was sufficient interest to warrant a consideration of this patient-led initiative

Autoimmune diseases (ADs) represent a heterogeneous family of chronic, disabling diseases with varying natural histories and a wide range of clinical symptoms. ADs share underlying defects in the immune response resulting in the body attacking its own organs, tissues and cells thus causing serious damage in the process. Predisposing or risk factors associated with the onset and progression of AD include heredity, certain environmental agents including metals, chemicals (drugs, pesticides etc.) dietary elements and microbiological agents. More than 80 individual ADs have been identified with about 75% of those affected being women.

ADs have hitherto been thought to be rare diseases among Africans but indications are that their incidence is now increasing and may soon pose a significant public health problem. In Ghana, significant numbers of ADs are now being diagnosed but unfortunately there is very little documented evidence on the situation.

It is hoped that the study will generate information that will help identify ADs that are of public- health priority in Ghana in terms of prevalence.

http://www.myelitis.org/fellowship/Jim%20Lubin%20Fellowship%20Fund%20Raising%20Letter%208-7-11.pdf

Here are some of the children. Truly there are many Little Johns out there…

Ruth - 3 years - doesn't walk or talk

Ernest - 8 years - does not talk

Nii Daeko - 3 year- doesn't walk or talk

We need to intensify education in Ghana on neurological disorders and their management.

We ‘discovered’ Little John a child with cerebral palsy last year and linked his father with Dorcas Foundation. Thanks to the foundation, he gained the source of an independent income which was to free him to give his son the necessary therapies. But the condition was badly managed. This case is in court so we cannot comment…

Farewell Little John. Your smile is still on the Sharecare flyer. Rest in perfect peace.

‘Being not’ - Definition: This is chronically living with limitations due to health/physical challenges. It can be psychological as well.

My musings today are focused on the spousal inter relationship in a care-giving/well-spouse situation.
When one of the two people in a marriage is living with a chronic challenge, some normal interactions can be altered. For one thing, the ‘well spouse’ (for want of a better term) may feel angry that the challenged one is ‘always ill’. These feelings may never be expressed, but suppressed as they are, come out in strange ways, and unexpectedly.

The well spouse misses out on being able to take the challenged one for granted as well. Taking each other for granted, sounds more dreadful than I mean to. Perhaps it’s more like, being able to rely on the spouse for a certain range of given things consistently. Like having meals cooked for example, or being able to feed themselves. Then there is the issue of having gone through and survived losing the challenged one to complications due to their issues. They may start from gratitude that they missed being widowed or widowered (is that a correct word?) And gradually move to indifference as the dull routine of ‘being not’ sets in.
This can make life appear monotonous and the two parties may become independently lonely while living in the same space. I guess this ‘lonely while in company phenomenon’ can happen to anyone. Brother and sister, parent and child , between friends and more.
On top of all the above, there is the issue of the challenged one being constantly seen as a ‘patient’ by the other. This robs them of some of the essence of their humanity. There could be a loss of sexuality all together for example. The well spouse may guilt trip themselves for ‘thinking selfishly’ about sex (if you will) and the challenged one may guilt trip themselves in turn about not providing often enough or at all, or has to deal with the frustrations of thinking it but not being able.
It can be a strange dynamic altogether and slightly different from similar situations that occur in regular people’s lives.
With the underlay of health challenges, the synergy of interactions are different.
So, how can one reduce the negative effects of all these on the collective psyche of the couple/family/friendship? This is worth thinking about.
Most doctors, family and friends and indeed the couple themselves view sexual activity as a secondary issue. In all the key ‘feel good factor indicators’, I wager sexuality and sex are deemed the very bottom of the heap if ever considered at all.  Maybe it should be, but for practical reasons only. But when everything is pared down to practicality - there goes the very essence of living. Sometimes, we need to be impractical, think the impossible and try it out. This is the only way to push the frontiers of human existence, to add to the fund of human knowledge, or just have some plain old, simple fun.
Where does libido feature in the quagmire of disability?
Perhaps, folks should be encouraged to talk about all the above, (not from the rooftops mind!)….and not as dinner conversation, or to strangers in the street either. Or maybe we should just leave things be? …. just in case we may be written off on another count! That of being a deviant, addict or weirdo of some sort as well!
Ah well…..

Lara Cookey
Accra, Ghana
June 2011

Sharecare Ghana has donated a wheelchair to 17-year-old Timothy, who is severely disabled as a result of untreated hydrocephalus. Timothy was however in high spirits and became quite animated when he was sat in his chair.

His family said doctors had wanted to reduce the fluid in Timothy’s brain, but they did not go for the treatment because of lack of fund.

This is a sad reflection on our society - not only is Timothy suffering a preventable disability, but he has also not been given an education even though he speaks and communicates rather well…

By Lara Cookey
One of the basic coping strategies with living with chronic debilitating illness is the psychological well-being of the sufferer. After medications have been administered, lifestyle changes sought and support given by friends and family, there is a need to reach deep within. There is a need to tap into whatever shred of optimism or positivity you have and find ways and means to multiply it exponentially. For this will be the difference between living a life, and merely existing.
In my personal experience, nothing has ever dehumanised me as finding myself with physical incapacity and needing assistance from others. Nothing has made me feel more humiliated  than being forced by my disabilities, to adopt a strange and often abnormally slow gait as I struggled to move from one place to the other. There is no faster way of knowing what the sum total of humanity with all its foibles and vanity really is.

However, rising above the base level of this is the only way to ensure longevity. Choosing to live, and literally focussing on living joyfully ‘in spite’ of disability is crucial to survival.
Some call it super optimism , what ever it is called, this is what I needed and finding it has given me great freedoms.