GLOW OF HOPE

Steps that are countable, responsible and one that makes a difference ...
Follow Abhishek
It has been a very long time since I wrote something on my blog. Life has been quite difficult these past few months with Anya's medical condition but that I leave for another blog post. Right now we are taking about Multiple Sclerosis (MS) and my journey of having this condition for nearly 18 years - I have been experiencing something that is known as a 'Foot Drop'.  

Image result for walking

Now you must be thinking what the hell am I actually talking about ???? 

Yes that is right - there is actually something called a 'Foot Drop' 

So what is a Foot Drop ? 


This is what I actually got when searching on the internet - Foot drop is a gait abnormality in which the dropping of the forefoot happens due to weakness, irritation or damage to the common fibular nerve including the sciatic nerve, or paralysis of the muscles in the anterior portion of the lower leg. It is usually a symptom of a greater problem, not a disease in itself (Source: Wikipedia).


Image result for a foot drop


Yes that is true - I am dragging my feet after a minute or so of walking. Its difficult to maintain that gait and time comes when I actually need to rest. 


What is the underlying problems of 'Foot Drop' ? 

It can be a long process to cure but it is very important to find out the underlying problems that has led to this drop. In my case it is my Multiple Sclerosis (MS) but for others it could be problems with peripheral nerve damage or neuropathy. In this most often its the squashing of the nerve that control the muscles that lift the leg. Most of the time even trapped nerves around the knee and lower spine could lead to a foot drop. Nerve damage linked to people having diabetes could also be a link to foot drop. Another underlying area is muscle weakness which is linked to muscular dystrophy and muscle wasting. When we speak about MS it is connected with causes on the brain and the spinal cord. Along with Multiple Sclerosis (MS) people with stroke and cerebral palsy are linked with the brain and spinal cord disorder.

How to get tested ? 


The best option is to first get yourself diagnosed and that is what I will be doing - I have my neuro  physiotherapist appointment coming soon and that will help me immensely just knowing what my  problems are and a strict exercise regime to improve and strengthen my foot. Maybe there would be the use of imaging tests like x-rays, ultrasound scans or CT scans. We just have to see what is in store. 

Best precautions to take with a ''Foot Drop''   


That is right - the most important tip here is to be careful as foot drop can lead to people having lots of falls. The falls happen when you find it difficult to lift up your front part of your foot and it starts to drag which leads to the body being unstable and you have a fall. This is the exact image to what is happening to me right now. 

There are measures in place to take and prevent a foot drop.  The need to start making small changes at home and your work place so that accidents do not happen. Its always easy to say then actions taken  ...... Changes have to be made - FULL STOP !!

Also other steps that people can take are :

  • Neurophysiotherapist:  Works on strengthening your weak muscles and gets the coordination back. Its a commitment and to get best results you have to follow their structured plan their recommended exercises. 
  • Electric Nerve Stimulation or ENS:  This step works with some patient but surely to get professional advice (your GP or Neurologist) on this and if it is needed in your case. 
  • Surgery:  This option is there in severe case but the best way to go about it to get professional advice on if you really need it. Your GP would be the best person to give that advice and recommend the best way forward. 
  • Ankle or Foot Brace:  This is a ankle-foot brace or splint that is worn on your lower part of your feet and gives support to the ankle and foot. This support straightens the foot and improves on the walk of the person. 

These are all steps that I would be looking into to try and get over my 'Foot Drop'. I know it is not the end of the world and I can still carry on living a normal life but something tells me that if I can strengthen my legs and my foot drop - a future MS episode did come my way, my legs would be strong enough to fight it and I still will have the ability to walk. Just have to be positive and take each step as it comes !!



Image result for foot drop


What is your take on 'Foot Drop' and have you experienced it personally or know someone that undergoes this medical condition ? 

Have your say on the comments box .....






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MAY
19

1 in a Million Charity Quiz for Anya Behl

Image result for anya behl

















Description

Our Charity Quiz and raffle, hosted by Goose's Quizzes, is to raise money for Anya Behl/AHC research, Sunday 19th May at Akva starting at 3pm

Anya has an extremely rare genetic condition called Alternating Hemiplegia of Childhood. She is only one of two children in Scotland with this devastating diagnosis and we are hoping to help her parents raise money for research to help find a cure for this condition. We can only imagine how this affects their every day lives and how hard it is to watch their child in so much pain. The following article gives more detail into their journey with this condition:
Please join us in helping to support Anya and her amazing parents, Katherine and Abhishek
Tickets are £5 per person or £28 for a group ticket for up to 6 people (excluding Eventbrite booking fee and VAT)

Children are welcome at Akva. The Quiz starts at 3pm but we recommend arriving 10-15 minutes before to secure your seat and buy a ticket for the raffle! :)
You can also pay on the day although we would prefer you purchase in advance so we can have an idea of many people are coming.
We will be holding a raffle with prizes, so far, including:
  • Charlie Miller haircut & blowdry
  • Walker Slater cashmere scarf
  • Cafe Anduluz £25 voucher
  • Valvonna & Crolla £20 voucher
  • Two tickets to see Amelie at the King's Theatre on June 25th
The winning quiz team will receive a gift from Akva! Maximum 6 people per team.
If you can't make it to the quiz but would like to donate here is Anya's Just Giving page:
Thanks so much you for your support!
Anya's medical condition showcased on BBC Scotland News at Nine. Attaching the write-up below:

My one-in-a-million daughter is a 'human timebomb'

Anya Behl
Image captionAnya can sometimes lose developmental skills and have to re-learn them all over again
An Edinburgh mother has described her 18-month-old daughter as a "human timebomb" after being diagnosed with a one-in-a-million condition.
Anya Behl is one of only two Scots with the rare illness, with only 500 cases in the world.
Doctors describe it as being like having seven diseases all at once.
Katherine Behl said she wakes every morning not knowing if it will be a normal day or one where her child has a life-threatening episode.

'Thought she would die'

Anya was born in July 2017.
When she was just 10 weeks old, she had her first experience of Alternating Hemiplegia of Childhood (AHC).
The condition causes "episodes" similar to epileptic seizures, but also has symptoms similar to stroke, paralysis and Parkinson's disease.
The episodes can happen at any time.
Katherine and Anya Behl
Image captionKatherine Behl thought 10-week-old Anya was going to die during her terrifying first episode
Mrs Behl, a doctor, told BBC Scotland's The Nine that the first one was terrifying: "At ten weeks old life just stopped.
"She was in bed with us - she was loving tummy time in the mornings. Suddenly she did this terrible, really heart-wrenching scream.
"We turned her over and my husband said her eyes were twitching. I had a quick look at them and it was obvious something really bad was happening.
"Her eyes were just flickering to the side and rolling and she was looking really vacant. She started getting really rigid in her spine. I thought she was having a seizure.
"It lasted about three minutes. We were getting ready to go to hospital. Then it happened again in the house.
"On the way on the car it started again. She did a scream and I thought she was having a stroke.
"I thought she was going to die."
Abhishek, Katherine and Anya Behl
Image captionAbhishek and Katherine have decided to make the most of each day while they try to help fund research into treatments

What is AHC?

AHC is caused by mutations in the ATP1A3 gene.
Sufferers experience repeated, though short-lasting, attacks of hemiplegia - paralysis of a portion of the body.
This ranges from numbness to full loss of feeling and movement.
Attacks or episodes may last for minutes, hours, or even days. Sleep can relieve the symptoms.
If the autonomic nervous system - which controls body functions such as breathing or the heartbeat - fails, AHC can cause sudden death.

Neurological symptoms

Many more episodes and many tests followed at the Royal Hospital for Sick Children and in February 2018 Katherine and her husband Abhishek learned from genetics results that Anya had the one-in-a-million condition.
Mrs Behl explained: "It involves lots of neurological symptoms and some experts describe it as many conditions in one. It is not inherited it is just by chance.
"Along with neurological symptoms which can be tremors, weakness, paralysis, eye movements, speech problems, painful rigidity, it causes other non-neurological problems - breathing, heart and developmental problems."

'Enjoy each day'

Mr Behl says it is sometimes a case of one step forward, two steps back.
After each episode, some skills can be lost. Things she has learnt can be lost because of her condition.
Mrs Behl said: "Last May, she lost her head control, went floppy like a new born. She had to re-learn that all over again."
Anya Behl
After spending months just waiting for the next episode to happen, the family decided they had to move on.
Mrs Behl said: "You can't live like that waiting for each episode to come so we just try to enjoy each day as it comes and we live in hope each day will go well.
Because the condition is so rare, there is little research and treatment.
The only drug she takes has so far been unable to stop the episodes.
The family are now fundraising to help pay for pre-clinical trials into the condition with the support of several AHC foundations in the US.
They hope this could mean a brighter future for their one-in-a-million girl.
Link to BBC News 



Anya Behl

Our one in a million daughter Anya on BBC Scotland at Nine. Sharing the video

Also attaching the JustGiving page link for people wanting to make a contribution.

Do leave a comment and have your say.

Thank you so much.




  • Anya Behl suffered a stroke-like attack when she was 10 weeks old
  • Doctors were baffled before diagnosing alternating hemiplegia of childhood 
  • Only 500 families worldwide are coping with AHC which has no treatment
  • Researchers are hopeful to change lives with therapy in its first stages of trialling

It took four months for doctors to figure out what was wrong with Anya after her first stroke-like episode at ten weeks old which was 'terrifying' for her parents
It took four months for doctors to figure out what was wrong with Anya after her first stroke-like episode at ten weeks old which was 'terrifying' for her parents
The family of a toddler with a one-in-a-million condition that gives her episodes of paralysis are trying to raise money for groundbreaking research.
Anya Behl, who is 18 months old, was diagnosed with alternative hemiplegia of childhood (AHC), a neurological condition which can cause numbness or full loss of feeling and movement.
It took four months for doctors to figure out what was wrong with Anya's after her first stroke-like episode at ten weeks old.
Her parents, Abhishek and Katherine Behl, from Edinburgh, were terrified as her eyes flickered and she let out a 'terrible scream'.
Now, they live in fear an attack will strike at any moment, and won't leave Anya' side.
There are around 45 families in the UK and 500 worldwide coping with the rare condition, which has no effective treatment.
Anya has a gene called ATP1A3 which is identified as a leading cause of AHC and represents approximately 76 per cent of those affected
Anya has a gene called ATP1A3 which is identified as a leading cause of AHC and represents approximately 76 per cent of those affected
The family of 18-month-old Anya Behl, who has a one-in-a-million condition that gives her episodes of paralysis, are trying to raise money for groundbreaking research
The family of 18-month-old Anya Behl, who has a one-in-a-million condition that gives her episodes of paralysis, are trying to raise money for groundbreaking research
Mrs Behl said: 'Despite starting 2019 with Anya in and out of paralysis, distress and a host of neurological symptoms, we now have real hope for advancements in AHC research.'
The couple's lives were changed forever in October 2017 when they rushed Anya - who looked like she was having a stroke - to the Royal Hospital for Sick Children.
Mrs Behl, a hospital doctor, said they thought their daughter 'was going to die'.
She said she knew what was going on medically - but as a mother, she felt 'helpless'.
After four months of tests and thinking that Anya was suffering from epilepsy, the couple were told her daughter had the ATP1A3 gene, which is responsible for around 76 per cent of AHC cases.
Anya is one of only two children in Scotland with the condition, and according to the Alternative Hemiplegia of Childhood Foundation, the incidence of AHC is estimated at roughly one in 1,000,000 births.
But they say the true incidence may be higher since the disorder is commonly misdiagnosed due to the 'lack of awareness' about AHC.
Mrs Behl said: 'When she's paralysed down one side, but not in her worst case, it's heartbreaking to see her try to crawl when she can't balance unable to move one side or support herself. 
'Almost all children with AHC have physical, cognitive and developmental disabilities across a spectrum. 
'By the age of two 50 per cent have epilepsy and there is much being discovered and investigated about the cardiac and other life-threatening aspects of this condition.' 
Anya is watched by her parents 24/7, meaning Mr Behl had to quit his job
Anya is watched by her parents 24/7, meaning Mr Behl had to quit his job
When an attack strikes, Anya can be paralysed down one side. She also has breathing difficulties
When an attack strikes, Anya can be paralysed down one side. She also has breathing difficulties
The AHC Foundation say there is no proof that the disorder limits life expectancy, but that children do appear more susceptible to complications such as aspiration, which can sometimes be life-threatening. 
Abhishek and Katherine Behl, from Edinburgh, said there is a real hope for advancing treatment if the money can be raised for research in the US
Abhishek and Katherine Behl, from Edinburgh, said there is a real hope for advancing treatment if the money can be raised for research in the US

In rare cases, children have died suddenly and unexpectedly, in circumstances similar to the sudden death reported in patients with epilepsy.
The couple is hoping to raise funds for a groundbreaking gene therapy project in the US for people with the ATP1A3 gene.
The funds would progress research towards a pre-clinical, non-human trial to be conducted with the support of several AHC foundations in the US.
The trial is essential before ethical approval can be sought with a view to testing the gene therapy in humans.
Mrs Behl said: 'Indeed, the prospect for AHC gene therapy is exciting scientists and families since it may bring real hope for a devastating condition.'  
Mrs Behl said her Anya's condition has taken an emotional toll on the family, with her husband quitting his job as a travel consultant to look after Anya, who has breathing difficulties, full time.
She said: 'We just have to live truly in the moment and enjoy a good hour or good day or even enjoy her being able to eat breakfast without paralysis or distress rather than think of the whole picture.

'At first we used to get anxious waiting for the next episode to hit not knowing what might come. But we realised it wasn't sustainable to live like that.
'We are grateful for the moments she is well and her happy self and try not to focus on it changing in a second. We know how fragile life can be.'
Even days out with their young daughter involve stringent preparation in case a seizure takes place.
Mrs Behl, who said the condition effects everything they do, said: 'We don't leave home without her emergency medications.
'Our nappy bag includes her emergency medication and a paediatric face mask should we need to help support her airway if it affects her breathing. 
'In 18 months at least one of us - my husband or I - have been with her 24/7 except for one hour when my mum looked after her and constantly watching her as her condition can change in a second.' 
The AHC community have until April 2019 to raise the money. Anya's JustGiving page can be found here.  

WHAT IS ALTERNATING HEMIPLEGIA OF CHILDHOOD?

Alternating Hemiplegia of Childhood (AHC) is a rare neurological disorder in which repeated, but short-lasting, attacks of partial paralysis (hemiplegia) occur.
AHC usually affects only one side of the body, but sometimes it can affect both sides. 
Episodes can range from simple numbness in an extremity to full loss of feeling and movement.
An attack may last for minutes, hours, or even days, and can normally be relieved by sleep.
The incidence of AHC is estimated at roughly one in 1,000,000 births - only about 300 people in the US have been diagnosed.
Those affected don't grow out of the disorder, but episodes may change and sometimes even decrease in frequency as a child gets older.
Signs and Symptoms: 
  • Lack of muscle tone
  • Stiffening of extremities
  • Lack of coordination when performing voluntary movements
  • Nystagmus (fast uncontrollable movements of the eyes that may be side to side, up and down, or rotary)
  • Eye disorders
  • Developmental delays
  • Seizures
In 2012, researchers identified the ATP1A3 gene as a leading cause of AHC - representing about 76 percent of those affected.
Currently there is no cure for AHC but researchers are working to identify drugs or drug-like compounds that are capable of restoring normal gene function.
The drug Flunarizine - an adjuvant of epilepsy therapy - has been shown to reduce the severity of paralytic episodes, but not necessarily the frequency.
Link to Daily Mail