Please compassionately contribute towards our mission in assisting and shouldering the burden of challenges faces by fellow citizens who are afflicted with Cerebral Palsy.

https://crowdfunding.justgiving.com/s-naqvi?utmid=2&utmterm=DYKAajWd4

3oT will continously run campaigns striving for the betterment of citizens burdened with CP.

These campaigns will involve various challenging activities such as the ascent of the tallest Peaks in the UK culminating in the climb to the summit of Kilimanjaro in October next year. Please watch this space.

The initial purpose of this project is to host and maintain a Pakistan wide cerebral palsy population register which will be known as the Pakistan Cerebral Palsy Register (PCPR). This register will collect data from each of the provinces on the incidence and prevalence of cerebral palsy. The Pakistan-wide register will supply data to researchers to investigate the cause and prevention of cerebral palsy; and enable service providers to plan for the present and future service provision needs of people with cerebral palsy. The aim is to bring together pediatricians, pediatric neurologists, epidemiologists and therapists from within the region in order to disseminate knowledge about cerebral palsy through epidemiological data to develop best practice in monitoring trends in CP, and to raise standards of care for children with cerebral palsy.

Short Term Goal

Our short term goal is to investigate the prevalence of CP in Pakistan, this project will require liaising local and government organizations and assess what the ground realities are. We have already started speaking to some local organizations and the initial feedback tells us that there is virtually no data on the prevalence of CP. The government does not seem to have the appetite or will to initiate any such program. The study will have to been funded and done privately. Working hard to find the skill set and resources to kick the process into action.

In addition to this we are looking to assist the Akbar Kare Institute (AKI) for Cerebral Palsy in areas such as providing assistive devices for
its ever growing number of child patients.

Long Term Goal

The long term goal is not only to extend this register of children with cerebral palsy within the sub-continent and eventually collaborate the register with member countries in the region but to include adults with CP under the same register

The Motivation

Cerebral palsy occurs in about three babies per 1000 live births. Measuring trends in prevalence over time and to understand better the causes of the cerebral palsy and therefore a register of all children born in a region with cerebral palsy can help with this. The gathered information can also help with planning services and assist parents of children with cerebral palsy to be told about research projects.

A diagnosis of Cerebral Palsy will come only after several evaluations, observations and tests are performed. Checklists similar to the one below are used to assess and diagnose the type and severity of the CP. The condition varies in terms of the the number of limbs affected and one of the four types of brain damage that may have caused the condition.

Cause of Cerebral Palsy

▢ Hypoxic-Ischemic Encephalopathy, or HIE – Lack of oxygen to the brain or asphyxia

▢ Intracranial Hemorrhage, or IVH – Brain Hemorrhage

▢ Periventricular Leukomalacia, or PVL – Damage to white matter tissue in the brain

▢ Cerebral Dysgenesis – Brain malformation, abnormal brain development

Time Brain Damage Occurrence

▢ Acquired Cerebral Palsy – The child did not have Cerebral Palsy at the time of birth. Cerebral Palsy was acquired after birth, but before brain was fully developed.

▢ Congenital Cerebral Palsy – The child was born with the condition. Brain damage occurred during pregnancy, at birth, or immediately after birth.

▢ Genetic Predisposition to Cerebral Palsy – Cerebral Palsy is not considered to be hereditary, but hereditary conditions predisposed the child to Cerebral Palsy.

▢ No Cerebral Palsy – The brain damage occured after the brain has fully developed causing impairment similar to Cerebral Palsy, but is clinically identified by the actual cause.

▢ Not Determined – Timing of brain damage has not yet been determined.

Severity Level

▢ Mild – Cerebral Palsy means a child can move without assistance. Their daily activities are not limited.

▢ Moderate – Moderate Cerebral Palsy means a child will need braces, medications, and adaptive technology to accomplish daily activities.

▢ Severe – Severe Cerebral Palsy means a child will require a wheelchair and will have significant challenges in accomplishing daily activities.

Topographical Distribution

Extent:

▢ Paresis means weakened

▢ Plegia means paralyzed

▢ Monoplegia/Monoparesis means that only one limb is affected. It’s thought that this may be a form of hemiplegia/hemiparesis where one limb is significantly impaired.

▢ Diplegia/Diparesis usually indicates that the legs are affected more than the arms. Primarily lower body involvement.

▢ Hemiplegia/Hemiparesis indicates that the arm and leg on one side of the body is affected.

▢ Paraplegia/Paraparesis means the lower half of the body, including both legs, are affected.

▢ Triplegia/Triparesis indicates that three limbs are affected. This could be both arms and a leg, or both legs and an arm. Or, it could refer to one upper and one lower extremity and the face.

▢ Double Hemiplegia/Double Hemiparesis indicate that all four limbs are involved, but one side of the body is more affected than the other.

▢ Tetraplegia/Tetraparesis indicates that all four limbs are involved, but three limbs are more affected than the fourth.

▢ Quadriplegia/Quadriparesis means that all four limbs are involved.

▢ Pentaplegia/Pentaparesis means that all four limbs are involved, with neck and head paralysis often accompanied by eating and breathing complications.

Motor Functions

Muscle Tone:

▢ Hypertonia — increased muscle tone often resulting in very stiff limbs. Hypertonia is associated with spastic Cerebral Palsy

▢ Hypotonia — decreased muscle tone often resulting in loose, floppy limbs. Hypotonia is associated with non-spastic Cerebral Palsy Spasticity:

▢ Spastic (Pyramidal) – Spasticity means increased muscle tone. Muscles continually contract making limbs stiff, rigid, and resistant to flexing or relaxing. Reflexes can be exaggerated and movements jerky and awkward.

▢ Non-Spastic (Extrapyramidal) – Non-spastic Cerebral Palsy is decreased and/or fluctuating muscle tone. There are multiple forms, each characterized by particular impairments. One of the main characteristics of non-spastic Cerebral Palsy is involuntary movement. Movement can be slow or fast, often repetitive, and sometimes rhythmic.

▢ Mixed – It is common for a case to involve both spastic and non-spastic Cerebral Palsy. When a child’s impairments fall into both categories, it is considered mixed Cerebral Palsy. The most common form of mixed Cerebral Palsy sees some limbs affected by spasticity and others by athetosis.

Non-Spastic Sub-Categories:

▢ Ataxic – Ataxic Cerebral Palsy affects coordinated movements. Balance and posture are involved. Walking gait is often very wide, and possibly irregular. Control of eye movements and depth perception can be impaired. Often fine motor skills requiring coordination of the eyes and hands, such as writing, are made difficult.

▢ Dyskinetic – Dyskinetic Cerebral Palsy is separated further into two different groups; athetoid and dystonic. Athetoid Cerebral Palsy includes the cases with involuntary movement, especially in the arms, legs, and hands. Dystonic Cerebral Palsy encompasses the cases that affect the trunk muscles more than the limbs, and results in fixed, twisted posture.

▢ Athetosis — slow, writhing movements that are often repetitive, sinuous, and rhythmic.

▢ Chorea — irregular movements that are not repetitive or rhythmic, and tend to be more jerky and shaky.

▢ Choreoathetoid — a combination of chorea and athetosis, where the movements are irregular, but twisting and curving.

▢ Dystonia — involuntary movements accompanied by an abnormal, sustained posture.

▢ Ataxia — does not have to do with involuntary movements, but instead indicates impaired balance and coordination.

Gross Motor Function Classification System

▢ GMFCS Level I. Walks without limitations.

▢ GMFCS Level II. Walks with limitations. Has limitations walking long distances and balancing. Not as able as Level I to run or jump. May require use of mobility devices when first learning to walk, usually prior to age 4. May rely on wheeled mobility equipment when outside of home for traveling long distances.

▢ GMFCS Level III. Walks with adaptive equipment assistance. Requires hand-held mobility assistance to walk indoors, while utilizing wheeled mobility outdoors, in the community and at school. Can sit on own or with limited external support. Has some independence in standing transfers.

▢ GMFCS Level IV. Self-mobility with use of powered mobility assistance. Usually supported when sitting. Limited self-mobility. Likely to be transported in manual wheelchair or powered mobility.

▢ GMFCS Level V. Severe head and trunk control limitations. Requires extensive use of assisted technology and physical assistance. Transported in a manual wheelchair, unless self-mobility can be achieved by child learning to operate a powered wheelchair.

▢ Other ____________________

▢ None

Orthopedic Impairment Assessment

▢ Muscle Tone

▢ Movement Coordination and Control

▢ Reflexes

▢ Posture

▢ Balance

▢ Gross Motor Function

▢ Fine Motor Function

▢ Oral Motor Function

Associative Conditions and Co-Mitigating Factors

▢ Behavior

▢ Cognition

▢ Communication

▢ Developmental Delay

▢ Digestive Health

▢ Dysphagia

▢ Hearing

▢ Mobility

▢ Neurological Health

▢ Nutrition Health

▢ Oral Health

▢ Orthopedic Health

▢ Respiratory Health

▢ Seizure Control

▢ Sensory

▢ Skin Health

▢ Socialization

▢ Vision

So it is now decided the 3ot team will ascend Ben Nevis in just under a month on 27th August 2017.

This time around we know what accept after the very challenging climb of Snowdon last month. There will be five of us which is brings confidence for the climb.

I have been training both in the gym and outdoors trying to simulate, as much as possible, the terrain that we will have to overcome.

The round trip is approximately 16 KM (10 mi) and I want to be able to complete this in under 10 hours as the days are getting shorter. Sunrise in Scotland on 27th August is 0608 and sunset at 20:19 giving us a 14 hour window to complete the hike.

The plan is start early and be back by 17:00

---------------->Fast Forward to 26th August 2016--------------------------->

Our 6 member Team 3oT consisted of Jit Rawat, Ben Osi, Ausaf Rasheedi, Salmaan Armit, Nathan and Myself rendezvoused at my home @ 0900 and set off towards Scotland in our 7 seater at around 1000.

We arrived at the Ben Nevis Hotel after a 13 hour grueling drive from Croydon and immediately hit the sack. After a hearty breakfast at 0700 we drove to the base of Ben Nevis tourist trail and started our trek at 0845.

It was one heck of a hike up the winding rugged and rocky trails. The first 3 KM were not that taxing and we made good ground enjoying the awesome scenic and breathtaking views of Scottish Highlands but then the trail git steeper and rockier. We zigzagged up the spiraling trail resting every 1 km or so for 5 minutes or so. This was an energy sapping phases which we survived eating bananas, mars bars, drinking water, coke and red bull.

My legs started to stiffen badly about 75% of the way up, there was no turning back. I thought of the children for whom were were undertaking this mission and about 5.5 hours and 9km later we arrived at the summit of Ben Nevis - wow we had done it.

Walking down was very challenging with extremely stiff legs (I fell multiple times and was saved by the protective clothing I was wearing) and I wouldn't have made it if it weren't for Ben, Jit and Ausaf who physically supported me all the way down to the base. We made good time and were back down by 1815.

This experience and the support I have received has left me feeling full of hope and enthusiasm; I will continue to soldier on for this cause.

ScaFell Pike here I come.

Appears in about 75% of those afflicted
Most notable symptoms are rigidity of limbs with varying range of motion. Spasticity manifests itself as stiff and jerky and can be further sub-divided by the extent to which the body is affected.

Hemiplegia

Both limbs on one side of the body are affected
Diplegia: Both legs are affected, the arms are usually not affected or only mildly spastic
Quadriplegia: all four limbs are affected to varying degrees

Athetoid

Also known as dyskinetic or dystonic cerebral palsy is found to affect about 20% of cases. The condition symptoms manifest in unintended movements and wriggles. Those afflicted usually possess good intelligence and awareness.

Ataxic Cerebral Palsy

This is the least common type of cerebral palsy, affecting about 5% of the CP afflicted population. Symptoms are less apparent for ataxic CP compared to Athetioid and Spastic forms of the condition. Symptoms include difficulty with spatial awareness, difficulty negotiating balance accompanied with shaky and unsteady movement.

Mixed Cerebral Palsy

Represents those who are afflicted with more than one form of the condition

When I first embarked on this journey I presumed that it would be a walk in the park - I was wrong. With the level of stiffness in my lower limbs I need about 3 times the effort and energy to perform what an able bodied person could achieve. This does not take into account the mental and emotional stress that has to be endured.

I discussed the plan with Jit Rawat my fitness trainer and friend of 10 years and he came up with a training program geared towards core strength and balance combined with endurance exercises. I have been working on this routine since January 2016.

Two days to go Snowdon Peak Snowdonia National Park, Wales. Elevation 1085m above sea level, 11 KM hike to the top and back, via the Pyg Track, estimated to take 6 hours. The weather is supposed to be wet which adds to the difficulty for a novice like me.

24th June 00:07: A little under 30 hours to go, just went through the checklist of my gear it all seems to be there!

I will be accompanied by an old friend Alan Buckley on this mission. He has valuable experience in hiking and mountaineering so that just boosts my confidence.

26th June 22:00: This was the most challenging experience of my life but at the same time highly exhilarating and satisfying. The terrain was rugged, I fell a total of 14 times 2 of which were hard and painful. The toughest part of the mission was the descent in unfavorable stormy wet weather. The winds at the summit were most definitely 50-60 mph accompanied with buckets of rain mixed with hail. I got into trouble after falling twice whilst descending and was lucky to meet a group of hikers who helped me on the 6 hour descent. we arrived back at base @ 22:00 on 25th June 2016 - mission accomplished.

Next stop Ben Nevis - watch for updates

This will be the first of many missions that I envisage undertaking in my quest to spread awareness about Cerebral Palsy and understand its prevalence in under developed nations. I intend to scale Mount Kilimanjaro October 2017 for this cause. I realized that scaling Kilimanjaro will take more than a dream; the fact is that it will take a lot of effort in training and conditioning myself to deal with the various challenges that this climb will bring. I have therefore decided to attempt the ascent of the 3 tallest peaks in the UK, Snowdon, Ben Nevis and Scafell Pike.

Snowdon which is located in western Wales is my first target. I am attempting to scale this on 25 June 2016. This is a 11 Km hike to the top and back. I will be accompanied by an old buddy Alan Buckley who has graciously accepted my invitation to share the challenge. Wish me luck.