Sharecare4u Blog

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.

We launched our handbook for caregivers at the School of Social Work at Osu, in Accra last Saturday. The report below was in The Mail of Tuesday November 30 2010.

The Deputy Commissioner of the Commission for Human Rights and Administrative Justice (CHRAJ) Ms. Anna Bossman has called on the state to take adequate care of the vulnerable in society just as it would ordinarily do for the fit and hearty.

Speaking at the launch of Sharecare Ghana’s Handbook for Caregivers over the weekend in Accra, she said the 1992 Constitution enjoins the state to ensure that in taking care of the entire population, the upkeep and security of the vulnerable is not relegated to the background as that will amount to the state shirking its responsibilities and duties.

“It is the responsibility of the state to ensure that the people who make up the country are well catered for or in good standing to take care of their daily lives.

“It is unfortunate that, in carrying out this responsibility, the state tends to forget about the very vulnerable and visibly weak and fragile in society,” she said.

In launching the 10-page brief but concise handbook, Ms. Bossman called on caregivers to show respect, compassion and empathy to their patients and was optimistic that the document will go a long way to help make their work a lot easier and exciting.

Ms. Farida Bedwei, a member of Sharecare Ghana advised caregivers to be observing of the mood swings of their patients to know how to deal with them at all times.

In a moving and touching conclusion she asked patients on the other hand, not “to bite the hands that feed them”, adding that they must reverse the same love and empathy a caregiver shows them.

The handbook was funded by the Ghana Federation for the Disabled and DANIDA and the launch by ABANTU for Development. It was chaired by Mr. Andrew Okaikoi, Chairman of the National Council on Persons with Disability.

Coordinated by Nana Yaa Agyeman, Sharecare Ghana is an association of people with autoimmune and neurological diseases, their families, friends, and the professionals taking care of them.

It has over the years, spearheaded many initiatives on disability including collaboration with the Noguchi Institute of Medical Research into autoimmune diseases.

Sharecare has presented a wheelchair to 13 year old Naa Adjeley – a donation from the Chairman of the National Council of Persons with Disability Andrew Okai Koi.

Naa Adjeley was not born with a disability, but according to her mother, got jaundiced at an early age and has since been unable to walk or talk. She has not received any medical help since then and has not had any education.

The month of May is being observed globally as Lupus Awareness Month, International Day of Albinism was May 4th and May 26th 2010 is World Multiple Sclerosis Day. In connection with these events, Sharecare Ghana and the Ghana Association of Persons with Albinism (GAPA) are holding a seminar for persons with disabilities on “The Impact of Climate Change on Human Health”.

Date: Wednesday 26th May 2010
Venue: Ghana Press Centre
Time: 9:30am to 11:30am

Our next meeting will be held this Saturday at Christman House, Airport Res. Area from 10am to 12 noon. We will be discussing this year’s projects and the coming meeting with the team from the Canadian Centre on Disability Studies.

People with autoimmune and neurological diseases have asked government to give clear guidelines about how they can benefit from the National Health Insurance Scheme (NHIS).
At a forum that gave them a platform to share their experiences, sufferers of these conditions said it was difficult getting the right diagnosis early, which resulted in high medical bills.
Autoimmune diseases are diseases, which cause the antibodies in humans to attack the cells instead of fighting external diseases. Autoimmune diseases often cause disability in the sufferer.
The forum was organized by Sharecare Ghana, a civil society organization that acts as a support group for people with neuro-immunological diseases in Ghana.
Dr. Augustina Charway, a neurologist at the 37 Military Hospital, explained to the patients that the first step to getting the right treatment is for a primary health care giver or a General Practitioner in any hospital to refer the patient to a neurologist.
“However, there is very little awareness about autoimmune diseases and sometimes primary health care givers are not able to identify the disease over a long period of time,” she added.
Dr. Charway advised people to visit the hospital whenever they feel unexplained numbness or weakness in any part of their body and said that the actual cause of autoimmune diseases has not been found but some could be hereditary.
Some members of Sharecare Ghana pointed out that the real difficulty for them was how to get the right doctors and early diagnosis.They therefore urged government to pay attention to such diseases under the NHIS.
Mr. Duut Abdulai, Executive Secretary of the National Council of Persons with Disabilities, added his voice to the call for government to pay attention to people with disabilities.
He said when issues of disability are mainstreamed into the development programmes of the country it facilitates development.
Nana Yaa Agyeman, Coordinator of Sharecare Ghana, said the organization is registering members, who are unable to work with the Livelihood Empowerment Against Poverty (LEAP) programme to enable them earn something to support themselves. The LEAP is a poverty reduction programme by government.
She said the organization would continue to lobby for the National Health Insurance Scheme in Ghana to cover all diseases.
Miss Mimi Areme, Miss Ghana 2009, who also attended the meeting, said she would embark on an educational campaign to encourage the showing of care and love to the disabled.
One of her projects is to advocate for people with autoimmune and neurological diseases.
Ghana News Agency
30 Jan. 10

We were given the opportunity to make a presentation at the 51st annual general conference of the Ghana Medical Association (GMA), which took place in Tamale, the Northern Regional capital from 4th to 9th November.
The GMA graciously gave us accommodation and allowed us free participation in the conference.
Our presentation was a 10-minute documentary film on ‘autoimmunity’, produced with information from the American Autoimmune-Related Diseases Association (AARDA).
The doctors received it well and noted that there is the need for medical students to be encouraged to specialize in immunology and rheumatology, in view of the symptoms that are often missed.
They promised to include ‘autoimmunity’ in the scientific session of next year’s conference.

Sharecare Ghana now has a Volta Region representative, Francis Foli.
On his first outreach in Ashanti-Kpoeta in the Ho-West constituency on 17th August , 2009 of the region, he met the chief and elders of the town to educate them on autoimmune and neurological conditions, and the various diseases that fall under this classification..
He told them of the association’s intention to establish a resource centre to collect data and inform people more about these conditions.
He presented handouts on the association to the chief, Togbui Gadze VIII and his wife and also to the community nurse in the town.
The chief said the town has a population of about 11,200, and promised to pass the information on.

Pre amble:
Romans 12:2 says Be no longer conformed to the patterns of this world but be you transformed by the renewal of your mind

My thoughts:
What are ‘unwitting effects’ and where are they from?
These are unspoken under currents of disquiet that insidiously take over the freedoms we could be enjoying.
They stem from an inherent knowledge of unaddressed issues, and the subtle psychological tensions these set up in the mind. They stem from habits and ways of thinking.
Unexpressed anger, resentment and regret, join together as a potent force that can create deep rooted depression.
They could be the result of action or inaction but more often it is inaction.
We could self perpetrate vicious cycles by adhering to old patterns, taking too long to take action, having many plans and never really implementing them.
They could be a symptom of paradigm paralysis, and or analysis paralysis.
They start with small daily habits, attitudes of mind and the extents to which options are sought and explored. These limit God in a sense, for:
He has given us the ability to ‘know what he has freely given us’.
He has given us the ‘ability to know the truth that will set us free’
He said,
‘My people perish for lack of knowledge’ and again, we stumble sometimes because we fail to ask.
Asking the right questions is absolutely critical to ‘Knowing’.
Knowledge equips us for actions we need to take to… ‘break through’
Breaking through, can be another word for ‘miracle’

Prayer:
Dear Lord my God, I release my breakthroughs and miracles now. I yield my habits, thoughts and actions to you Father God. Through the promptings of the Holy spirit, I choose new ways of thinking in the spirit of Romans 12:2 and develop a spirit in me that recognises ways in which I hinder myself and set up ‘unwitting effects.’ Let your illuminating light so shine in me, that your miraculous work is self evident. Let the blood of Jesus speak greater things than the blood sacrifices of my ancestors. I am released this day from any inherited, ‘unwitting effects’.
So shall I walk in freedom of heart, mind, psyche and spirit.
AMEN

Romans 12:2 says Be no longer conformed to the patterns of this world but be you transformed by the renewal of your mind

Lara Cookey
Accra
21 July 2009