This blog is dedicated to supporting caregivers who selflessly devote their time and energy to caring for their loved ones. As caregivers, it’s easy to overlook our own well-being while prioritizing the needs of those we care for. However, it’s essential to remember that practicing self-care is not only beneficial for our own health but also enables us to provide better care to our loved ones. In this article, we will explore the importance of self-care for caregivers and provide some practical tips to help you maintain your well-being and positivity while caring for others.
The Importance of Self-Care for Caregivers:
Physical Health: Caring for someone can be physically demanding. Prioritizing your physical health through regular exercise, a nutritious diet, and adequate rest can help you maintain energy levels, prevent illness, and reduce the risk of caregiver-related health issues.
Emotional Well-being: Caregiving can evoke a wide range of emotions, including stress, sadness, and guilt. Engaging in activities that promote emotional well-being, such as journaling, seeking support from others, or participating in hobbies you enjoy, can help reduce emotional strain and promote a positive mindset.
Mental Resilience: Caring for someone with specific needs can be mentally draining. Practicing stress-management techniques, such as mindfulness or meditation, can help you stay mentally resilient, improve focus, and cope with the challenges that caregiving presents.
Relationship Maintenance: Nurturing your relationships with friends, family, and support networks is vital. Maintaining social connections allows you to share experiences, seek advice, and receive emotional support, reducing feelings of isolation and enhancing your overall well-being.
Practical Tips for Self-Care as a Caregiver:
Here are some actionable tips to help you incorporate self-care into your caregiving routine:
Take Short Breaks: Utilise respite care services or ask a trusted family member or friend to step in for short periods, allowing you time for self-care activities or simply to rest and recharge.
Seek Support: Join caregiver support groups or seek professional counseling. Sharing your experiences with others who understand can provide invaluable emotional support and guidance.
Prioritize HealthyHabits: Maintain a balanced diet, engage in regular exercise tailored to your abilities, and ensure you get enough sleep. Small lifestyle changes can have a significant impact on your overall well-being.
Find Moments of Joy: Incorporate activities you enjoy into your caregiving routine, such as listening to music, reading, or practicing a hobby. Finding moments of joy can provide much-needed respite and boost your positivity.
Practice Self-Compassion: Be kind to yourself and recognize that you are doing your best in challenging circumstances. Avoid self-criticism and practice self-compassion by acknowledging your efforts and achievements as a caregiver.
As a caregiver, it’s essential to remember that your own well-being is just as important as the care you provide to others. Prioritizing self-care allows you to maintain your physical and emotional health, fostering a positive mindset and ultimately improving the quality of care you provide. Remember, by taking care of yourself, you are better equipped to care for your loved ones. Embrace self-care as an essential part of your caregiving journey and seek support from our organisation and other resources available to you. Together, we can create a healthier and more compassionate caregiving experience for all.
Amyotrophic lateral sclerosis (ALS) is a disease of the nervous system, affecting nerve cells of the brain and spinal cord. These affected cells, called motor neurons, communicate signals from the brain to the muscles in our body and allow for voluntary movement. In ALS, death of these neurons results in progressive weakening and wasting of muscles leading to severe disability. Around 5000 people in the UK are living with ALS at any given time, however, it is still not entirely understood how and why certain individuals are affected.
Currently, Riluzole is the only drug that has been approved for the treatment of ALS in the UK. It acts by blocking a brain chemical called glutamate. Glutamate is responsible for passing messages from one nerve cell to another in the brain. However, motor neurons are particularly sensitive to glutamate and over-stimulation of them can be toxic. Therefore, Riluzole acts to protect against motor neuron death by blocking glutamate and slows the progression of the disease. However, there is still an unmet need for more treatments that can further slow, or even halt, progression of the disease as well as increase the quality of life for those living with ALS.
The vast majority of ALS cases are spontaneous (sporadic ALS) with estimates of only 5-10% of ALS patients inheriting the disorder from a parent (familial ALS). In these rare inherited cases, a few causative genes have been identified, including C9orf72 and SOD-1, and these genes have provided key insights into how the disease can start as well as progress. ALS researchers use a wide range of techniques and species to model the disease from fish to mice to human cells. Each model can provide a piece of the wider puzzle and lead to exciting new drug targets that can be tested in clinical trials.
Clinical trials are essential for finding new and effective treatments and are made up of three phases. The first phase assesses the drug for initial safety and usually involves a small group of healthy participants. The second phase will involve patients and test if the drug is effective as well as safe in those with the condition. If successful, the treatment will move onto the third phase which involves larger groups of patients who will be monitored for a longer period of time for signs of improvement or side effects. Once the treatment is deemed safe and effective by this strict and lengthy process, it can be approved for use. Currently, there are several promising clinical trials for ALS taking place in the UK:
Alexion CHAMPION-ALS: this clinical trial based in London and Sheffield is currently in its third phase of studying the new drug, Ravulizumab. Ravulizumab aims to help treat ALS by blocking a component of the immune system. Usually, our immune system is primed to kill foreign material, like bacteria or viruses, or even our own cells if they turn cancerous, but in ALS the immune system can incorrectly attack motor neurons and contribute to their death. Previously, Ravulizumab has shown to increase survival in mouse models of ALS so announcement of the trial entering its third phase is very promising news.
TUDCA-ALS: is currently in its third phase and recruiting across the country. TUDCA stands for the drug it is trialling, taurousodeoxycholic acid, which was previously used to treat liver disease. TUDCA is being explored as an add-on to riluzole treatment and it has shown promise to protect against cell death by working as an antioxidant. Reactive oxygen species (ROS; also called free-radicals) are waste products produced by our cells when they turn the food we eat into vital, useful energy. However, if our cells produce too many ROS, or are less able to clear them up then they can get stressed and damaged. In cases of ALS where nerve cells are less healthy and already overwhelmed, antioxidants can help reduce this stress and protect against their death.
Biogen SOD1: is an almost decade-long study that started in 2016 to test the safety and effectiveness of a drug called Tofersen (also called BIIB067). This trial is aimed specifically for the 2% of ALS patients that have a mutation in a gene called SOD1. Each and every one of us have a unique genetic code that we inherited from our parents, our DNA. DNA provides thousands and thousands of recipes for the proteins that make us up, from our hair or eye colour to the enzymes that let us break down certain types of food. Some of the recipes, or genes, can come with mistakes meaning a protein is made that doesn’t work as it should. This is the case for the gene SOD1, where inherited mistakes cause this protein to become toxic, and this particularly affects motor neurons. Tofersen acts by reducing the amount of toxic SOD1 that is produced by the cells of SOD1-ALS patients therefore helping reduce the damage that it causes to motor neurons.
Biogen C9orf72 BIIB078: this trial is currently in its first phase, meaning it will be the first time the drug BIIB078 is tested in humans. Like the Biogen SOD1 trial, this trial is aimed at people with an inherited form of ALS, but specifically in those with a mutation in a gene called C9orf72. The C9orf72 gene provides the recipe for the C9orf72 protein which is present in many of our nerve cells and is important for how they communicate with one another. However, in some people, the C9orf72 gene can be drastically bigger because a portion of the recipe is repeated hundreds of times. Here, this bigger gene can now make toxic products that kills the cells that it is expressed in. It’s estimated that mistakes in the C9orf72 gene are responsible for 40-50% of inherited ALS cases and is also linked with certain forms of dementia. The drug BII078 aims to reduce the number of toxic C9orf72 proteins that are produced, helping to protect them and increase their survival.
The last 18 months have taken a heavy toll on many people, communities and industries. Science research unfortunately has not been exempt from COVID-based obstacles. Nonetheless, many research groups adapted quickly allowing their vital work to continue by switching to online-based tools and home test-kits. Now, as the world begins to open up again, promising times lay ahead for ALS research with the anticipation of fundamental breakthroughs in the field. And with it, a new sense of hope for all those affected with this debilitating disease.
We are thrilled to announce that Jaspal’s Voice has been nominated for the National Diversity Award 2021. We hope that this nomination will lead to further awareness of Motor Neurone Disease.
If you would like to nominate us please click on the highlighted Nominations link below by 4th June.
2020 was a difficult year for charities and non profit organisations due to COVID 19 and so we have all had to adapt on how we operate. With this in mind we have organised our first 2021 virtual event on Friday 29th Jan, to introduce a campaign which we would like you all to participate in and help raise the awareness for Motor Neurone disease. Outlined below is a step by step guide on how you can help:
Step 1:
Take a piece of A4 paper (or any size available) .
Step 2:
With a marker or pen write in a large size ‘#WITHOUTAVOICEYOUFEELALONE‘.
Step 3:
Ask someone to take a photo of you holding this paper up (if you’re not comfortable showing your face you can hide behind the paper).
Step 4:
Post this picture on your social media (Facebook, Twitter, Instagram and/or LinkedIn, then tag @JaspalsVoice and 5 (or more) of your friends. Ask them to take the same steps as you have just done.
That’s it! The aim is to spread the awareness to as many people as possible globally. With these 4 steps & your help you will be surprised on the outreach by the power of social media.
How to Tag your friends and Jaspal’s Voice on Instagram
When you post your picture on Instagram, below the caption area you will see ‘tag people’.
Click on ‘ >’
And your picture appears. Tap on the picture and type @jaspalsvoice and tap again to tag your friends. Press ‘Done’ when completed!
Jaspal’s Voice is pleased to announce Shweta Singh as our goodwill Ambassador to help raise funds and awareness of Motor Neurone Disease all around the world.
Shweta is the Founder & CEO of ‘Majestic by Shweta Singh’, a multifaceted consultancy focussing on human resources development and personal skills training.
Shweta grew up in a rural part of India where
she faced stereotypical challenges associated with being an ambitious female. From these humble beginnings Shweta had
developed a drive and ambition to succeed, to see the world and then to one day
return to her roots to help those less fortunate than herself.
Her achievements
are many and varied, from state boxing medallist to mountaineering in the Himalayas,
a national award winning pilot and a successful career in the aviation industry. After a
prosperous 10 years in the corporate world she followed her passion of helping
others by further founding the National Ambassador for Villages and Aspiration for
Mission India‘ NAVAMI’, an initiative designed to bring investment into the
rural sector of India with her vision for a self reliant rural India. Keen to
have international expertise evaluating her work, Shweta has achieved a place
at the prestigious Oxford University.
Her work and campaigning on social issues has
been recognised by various International organisations and press, covering
awards and accolades including ‘Mrs India Worldwide North 2018’, ‘Youth
Development Board’s India Shining Star Award 2019, ‘Mahanagar Mail Global
Achiever’s Award’ and ‘Female Icon of the Year 2019’.
As a regular speaker, Shweta brings her strong
social influence and status to continue to effect positive change across
matters and verticals which are very close to her heart.
We are thrilled to have Shweta’s valued
expertise and reach on board.
In the realm of personal blogging, I seldom share my experiences, but I find it imperative to document specific moments from my life during the pandemic. It’s taken me a while to gather my thoughts and craft this blog post, so here goes…
As the dawn of 2020 unfolded, everything appeared to be going swimmingly. We were in the midst of organising our inaugural Bollywood-style event in collaboration with the MND Association, aimed at raising both funds and awareness for Motor Neurone Disease. The excitement coursing through our veins as we prepared for this grand event was indescribable; it was by far the largest undertaking we’d ever embarked upon.
Yet, our jubilation was short-lived as we were compelled to cancel the event. The tempest of Covid-19 had hit, and with some attendees living with Motor Neurone Disease, we couldn’t risk their health or that of others. This decision proved prescient, as the entire nation soon found itself under lockdown.
Navigating the deluge of Covid-19 information felt overwhelming, especially with a vulnerable individual in our household. The initial days were challenging, but we gradually established a routine that worked rather well. I took it upon myself to finally delve into the books collecting dust on our shelves, while my husband tackled a thousand-piece jigsaw puzzle. I even ventured into the world of baking, creating delectable treats like Pistachio, Mascarpone & Salted Caramel Cheesecake, expanding my culinary horizons.
Our family embraced a comfortable routine, leaving little room for boredom, as we were acutely aware of the potential negative impact of the lockdown on our mental and physical well-being. Strangely, amidst the fear that permeated the air, there were silver linings to be found. Crime rates plummeted, the absence of traffic noise and reduced air pollution lent a peaceful serenity, and the environment reaped global benefits. In the evenings, we marvelled at the brilliantly shining stars, eagerly gazing at Elon Musk’s Starlink Satellites, forming a mesmerising trail of lights in the night sky.
The chorus of chirping birds grew louder in the mornings and evenings, while locals began to exchange smiles and greetings. The government’s allowance of one daily outdoor exercise activity—a walk down our street—was a small but cherished escape.
The highlight of our week became the Thursday night ritual of clapping at 8 pm to express our gratitude to the NHS for their unwavering dedication at the forefront of the battle against the virus.
During this challenging period, I received an email from our local neighbourhood watch community, ‘OWL,’ seeking volunteers to aid the elderly in our community. I noticed a glaring absence of volunteers from my own street and promptly offered my services, despite having a vulnerable person at home. With my children, all over 20 years old, to assist at home, I felt compelled to leverage my strengths and support those in need in my community.
I assembled a modest but meaningful list of individuals to assist—three aged over 90 and two over 70, all unable to collect their prescriptions and groceries. Venturing out with my homemade face covering and disposable gloves was admittedly daunting, but the thought of aiding the vulnerable overcame my fears.
A wave of altruism spread as numerous volunteers within the group undertook various tasks for both the vulnerable and the NHS. It was truly remarkable! My heartfelt thanks go to Vanessa Rousseau for her incredible organisation and for rallying volunteers to support the vulnerable. To acknowledge our collective support, ‘Three Rivers District Council’ and ‘W3RT Community & Voluntary Services’ graciously awarded us with beautiful certificates.
Simultaneously, as the nation grappled with the surge in job losses, many women sought ways to acquire new skills to re-enter the workforce and support their families. Some of these women reached out to me for advice on skill enhancement. Drawing upon my own experiences, I identified key skills applicable to various industries and set about creating short courses to help them. Additionally, I found myself guiding other women who aspired to start their own businesses by creating simple websites and hosting weekly webinars on social media usage.
In essence, the challenges of the pandemic underscored the empowering nature of my life experiences, both the highs and lows. They enabled me to navigate through this trying period and serve as a pillar of support as a wife, mother, daughter, sister, aunt, and friend.
As if life wasn’t hard enough, now COVID-19 comes into the mix!
I am a 41 year old Sikh Punjabi woman living in London who is now having
to adjust to online teaching of Mathematics at secondary school level. Having
been brought up in a tight knit and fairly large family this phase of social
distancing is also teaching me many new ways of living.
Let’s be honest 2020 hasn’t been a great year so far, our New Years
resolutions broke before they even started, and the end is nowhere to be seen.
So how do we stay positive in this situation or see the glass half full?
Having struggled with mental health issues almost all my life, aged
40-something I would like to think I have tried many options to stay ‘happy’.
Battling with depression and anxiety was very challenging. It took me some time
to realise I was a sufferer and more often or not I wasn’t aware I was going
through a phase as it was not something I had been educated on. Some days,
weeks, months or even years would go by and I would be ‘fine’ but then that
shadow of darkness would come and suck me back into this hole. So, I educated
myself on this topic and became more aware of the signs and symptoms and how
best I could manage these cycles. From visiting Gurudwaras to watching numerous
comedies, I have explored multiple avenues to make me feel better. It is safe
to say some worked and, well, some were not so great (for me that is) however
what I have needed to work out is which ones works best for me in this new
lifestyle?!
1 in 4 of us in the UK suffer from some kind of mental health issues,
predominantly depression or anxiety, and I am sure the current climate hasn’t
helped these figures. So that is 1 in 4, 25% percent of the UK’s population of
almost 68 million, 17 million are struggling with their mental health. A
shockingly large number but also a comforting number to know when you feel you
are alone in this ‘state of mind’.
So, what can we do to help ourselves from feeling lost, lonely, or stuck
in this dark place that not many seem to understand? I have learnt several ways
that work for me, maybe they will help you, too.
I want to share a few tips and tricks that have worked for me to get
through these tough times and make life easier on those difficult days when you
just do not see the point in anything.
1. Gratitude – spend 10 mins in the morning, afternoon and evening being
grateful for the simplest of things. The fact you are alive, the birds chirping
outside your window, the family around you or even having a roof over your head
are amazing factors in your life. Being grateful for what you have helps you
move away from thinking about what you don’t have.
2. Mindfulness – make sure that your MIND is not FULL of unnecessary
worries or thoughts that you cannot control and try to become MINDFUL of
everything around you. Be aware of the most basic things using your five senses
which will make you appreciate the world around you. God (or the Supreme
energy) has blessed us with the painting of life which needs time to be admired.
After a long time or the first time for some of us we have this time. Aren’t we
lucky!
3. Meditation – Last but not least is meditation. One of my favourite
hobbies if you like is to try various meditation techniques. Meditation is a
spiritual practice which has been practiced in one form or another in virtually
every religion so there must be something in it, right? To me it provides me
with an escapism from the outside chaotic world, the warmth of a colourful
internal world and the chance to give my mind a break which is working overtime
during the day and even at night when I’m sleeping. Though it takes time to
achieve complete bliss and avoid any thoughts when sitting in meditation it
most definitely gives me the opportunity to take ‘time out’ from the fast pace
life and provides light in the darkness around me.
Ultimately by taking small steps we can work towards lifelong change.
There’s no harm in trying! ‘If you think you are too small to make a difference try sleeping with a mosquito’ .
In reaction to the Covid-19 pandemic and its impact on the mental health
of artists and filmmakers, the annual Tongues on Fire UK Asian Film Festival
(UKAFF) marked Mental Health Awareness this week with a new initiative called
Talking Therapy tailored for the entertainment world.
As part of this unique offering, therapists will be at hand to provide a
phone support service for artists in need. The service aims to offer emotional
support, signposting problems, advice and information along with details of
organisations and support available on a case by case basis.
“We are launching a much-needed free Talking Therapy service for artists
working in the creative and media industries because during these difficult
times, people are feeling anxious and isolated, worried about the financial
uncertainty and in some cases the loss of loved ones,” explains Dr Pushpinder
Chowdhry MBE, the founder of UKAFF and a qualified psychotherapist.
“We would like to support artists and filmmakers by helping them
explore, through Talking Therapy, a range of options that are out there but
most importantly being there to listen,” she said.
As part of the service, artists will be able to access a safe space to
speak in confidence with a therapist, who will listen and consider possible
options.
The support line is open to help UK-based artists dealing with issues
such as bereavement, depression, anxiety, stress, worry, feeling lonely and
isolated, having relationship problems or suffering domestic abuse.
To access the therapy, artists can call a dedicated helpline (07930
491915) and leave a confidential message providing contact details and their
preferred time of contact. A therapist will then call back within 24 hours.
Tongues on Fire is a not-for-profit organisation that provides a
platform for independent film and arts from South Asia. It celebrates Indian
culture, its vibrancy and its many dimensions through storytelling, live
events, master-classes and cinema screenings.
As an experienced carer for MND, Heart, and Parkinson’s Disease patients, I understand the need to wear a mask around the vulnerable for their protection.
During this global Covid-19 pandemic I am currently a volunteer helping the elderly in my community who are self isolating and due to the shortage of masks I made some washable and reusable face masks. I was inspired by a study carried out by Cambridge University in 2013 (Cambridge Study) which examined homemade masks as an alternative to commercial face masks.
Please share this video as an article in the NY Times reports ” poorer countries losing out to wealthier ones in the global scrum for masks”. The shortage of face masks is worldwide and the developing countries are struggling, so we can all help by sharing our techniques.
This method shows a quick and simple way to make a face mask and most of all helps reduce the spread of this ugly virus. Stay Safe.
MND Association released a short video to help those living with motor neurone disease or caring for someone with motor neurone disease to understand the implications of the coronavirus.
Posted: July 7, 2023 by Susan Graham
Self-Care for Caregivers: Nurturing the Nurturers
This blog is dedicated to supporting caregivers who selflessly devote their time and energy to caring for their loved ones. As caregivers, it’s easy to overlook our own well-being while prioritizing the needs of those we care for. However, it’s essential to remember that practicing self-care is not only beneficial for our own health but also enables us to provide better care to our loved ones. In this article, we will explore the importance of self-care for caregivers and provide some practical tips to help you maintain your well-being and positivity while caring for others.
The Importance of Self-Care for Caregivers:
Physical Health: Caring for someone can be physically demanding. Prioritizing your physical health through regular exercise, a nutritious diet, and adequate rest can help you maintain energy levels, prevent illness, and reduce the risk of caregiver-related health issues.
Emotional Well-being: Caregiving can evoke a wide range of emotions, including stress, sadness, and guilt. Engaging in activities that promote emotional well-being, such as journaling, seeking support from others, or participating in hobbies you enjoy, can help reduce emotional strain and promote a positive mindset.
Mental Resilience: Caring for someone with specific needs can be mentally draining. Practicing stress-management techniques, such as mindfulness or meditation, can help you stay mentally resilient, improve focus, and cope with the challenges that caregiving presents.
Relationship Maintenance: Nurturing your relationships with friends, family, and support networks is vital. Maintaining social connections allows you to share experiences, seek advice, and receive emotional support, reducing feelings of isolation and enhancing your overall well-being.
Practical Tips for Self-Care as a Caregiver:
Here are some actionable tips to help you incorporate self-care into your caregiving routine:
Take Short Breaks: Utilise respite care services or ask a trusted family member or friend to step in for short periods, allowing you time for self-care activities or simply to rest and recharge.
Seek Support: Join caregiver support groups or seek professional counseling. Sharing your experiences with others who understand can provide invaluable emotional support and guidance.
Prioritize Healthy Habits: Maintain a balanced diet, engage in regular exercise tailored to your abilities, and ensure you get enough sleep. Small lifestyle changes can have a significant impact on your overall well-being.
Find Moments of Joy: Incorporate activities you enjoy into your caregiving routine, such as listening to music, reading, or practicing a hobby. Finding moments of joy can provide much-needed respite and boost your positivity.
Practice Self-Compassion: Be kind to yourself and recognize that you are doing your best in challenging circumstances. Avoid self-criticism and practice self-compassion by acknowledging your efforts and achievements as a caregiver.
As a caregiver, it’s essential to remember that your own well-being is just as important as the care you provide to others. Prioritizing self-care allows you to maintain your physical and emotional health, fostering a positive mindset and ultimately improving the quality of care you provide. Remember, by taking care of yourself, you are better equipped to care for your loved ones. Embrace self-care as an essential part of your caregiving journey and seek support from our organisation and other resources available to you. Together, we can create a healthier and more compassionate caregiving experience for all.
Last Updated: July 31, 2021 by Susan Graham
Advances in ALS research 2021 by Talya Goble
Amyotrophic lateral sclerosis (ALS) is a disease of the nervous system, affecting nerve cells of the brain and spinal cord. These affected cells, called motor neurons, communicate signals from the brain to the muscles in our body and allow for voluntary movement. In ALS, death of these neurons results in progressive weakening and wasting of muscles leading to severe disability. Around 5000 people in the UK are living with ALS at any given time, however, it is still not entirely understood how and why certain individuals are affected.
Currently, Riluzole is the only drug that has been approved for the treatment of ALS in the UK. It acts by blocking a brain chemical called glutamate. Glutamate is responsible for passing messages from one nerve cell to another in the brain. However, motor neurons are particularly sensitive to glutamate and over-stimulation of them can be toxic. Therefore, Riluzole acts to protect against motor neuron death by blocking glutamate and slows the progression of the disease. However, there is still an unmet need for more treatments that can further slow, or even halt, progression of the disease as well as increase the quality of life for those living with ALS.
The vast majority of ALS cases are spontaneous (sporadic ALS) with estimates of only 5-10% of ALS patients inheriting the disorder from a parent (familial ALS). In these rare inherited cases, a few causative genes have been identified, including C9orf72 and SOD-1, and these genes have provided key insights into how the disease can start as well as progress. ALS researchers use a wide range of techniques and species to model the disease from fish to mice to human cells. Each model can provide a piece of the wider puzzle and lead to exciting new drug targets that can be tested in clinical trials.
Clinical trials are essential for finding new and effective treatments and are made up of three phases. The first phase assesses the drug for initial safety and usually involves a small group of healthy participants. The second phase will involve patients and test if the drug is effective as well as safe in those with the condition. If successful, the treatment will move onto the third phase which involves larger groups of patients who will be monitored for a longer period of time for signs of improvement or side effects. Once the treatment is deemed safe and effective by this strict and lengthy process, it can be approved for use. Currently, there are several promising clinical trials for ALS taking place in the UK:
The last 18 months have taken a heavy toll on many people, communities and industries. Science research unfortunately has not been exempt from COVID-based obstacles. Nonetheless, many research groups adapted quickly allowing their vital work to continue by switching to online-based tools and home test-kits. Now, as the world begins to open up again, promising times lay ahead for ALS research with the anticipation of fundamental breakthroughs in the field. And with it, a new sense of hope for all those affected with this debilitating disease.
Last Updated: May 25, 2021 by Susan Graham
National Diversity Awards 2021 – Nominations
We are thrilled to announce that Jaspal’s Voice has been nominated for the National Diversity Award 2021. We hope that this nomination will lead to further awareness of Motor Neurone Disease.
If you would like to nominate us please click on the highlighted Nominations link below by 4th June.
Nominations
Thank you for all your support!
Last Updated: March 26, 2021 by Susan Graham
Lend A Hand for 2021
2020 was a difficult year for charities and non profit organisations due to COVID 19 and so we have all had to adapt on how we operate. With this in mind we have organised our first 2021 virtual event on Friday 29th Jan, to introduce a campaign which we would like you all to participate in and help raise the awareness for Motor Neurone disease. Outlined below is a step by step guide on how you can help:
Step 1:
Take a piece of A4 paper (or any size available) .
Step 2:
With a marker or pen write in a large size ‘#WITHOUTAVOICEYOUFEELALONE‘.
Step 3:
Ask someone to take a photo of you holding this paper up (if you’re not comfortable showing your face you can hide behind the paper).
Step 4:
Post this picture on your social media (Facebook, Twitter, Instagram and/or
LinkedIn, then tag @JaspalsVoice and 5 (or more) of your friends. Ask them to take the same steps as you have just done.
That’s it! The aim is to spread the awareness to as many people as possible globally. With these 4 steps & your help you will be surprised on the outreach by the power of social media.
How to Tag your friends and Jaspal’s Voice on Instagram
When you post your picture on Instagram, below the caption area you will see ‘tag people’.
Click on ‘ >’
And your picture appears. Tap on the picture and type @jaspalsvoice and tap again to tag your friends. Press ‘Done’ when completed!
Last Updated: November 1, 2020 by Susan Graham
Shweta Singh
Jaspal’s Voice is pleased to announce Shweta Singh as our goodwill Ambassador to help raise funds and awareness of Motor Neurone Disease all around the world.
Shweta is the Founder & CEO of ‘Majestic by Shweta Singh’, a multifaceted consultancy focussing on human resources development and personal skills training.
Shweta grew up in a rural part of India where she faced stereotypical challenges associated with being an ambitious female. From these humble beginnings Shweta had developed a drive and ambition to succeed, to see the world and then to one day return to her roots to help those less fortunate than herself.
Her achievements are many and varied, from state boxing medallist to mountaineering in the Himalayas, a national award winning pilot and a successful career in the aviation industry. After a prosperous 10 years in the corporate world she followed her passion of helping others by further founding the National Ambassador for Villages and Aspiration for Mission India‘ NAVAMI’, an initiative designed to bring investment into the rural sector of India with her vision for a self reliant rural India. Keen to have international expertise evaluating her work, Shweta has achieved a place at the prestigious Oxford University.
Her work and campaigning on social issues has been recognised by various International organisations and press, covering awards and accolades including ‘Mrs India Worldwide North 2018’, ‘Youth Development Board’s India Shining Star Award 2019, ‘Mahanagar Mail Global Achiever’s Award’ and ‘Female Icon of the Year 2019’.
As a regular speaker, Shweta brings her strong social influence and status to continue to effect positive change across matters and verticals which are very close to her heart.
We are thrilled to have Shweta’s valued expertise and reach on board.
Last Updated: November 4, 2023 by Susan Graham
When Life Throws You A Curveball
In the realm of personal blogging, I seldom share my experiences, but I find it imperative to document specific moments from my life during the pandemic. It’s taken me a while to gather my thoughts and craft this blog post, so here goes…
As the dawn of 2020 unfolded, everything appeared to be going swimmingly. We were in the midst of organising our inaugural Bollywood-style event in collaboration with the MND Association, aimed at raising both funds and awareness for Motor Neurone Disease. The excitement coursing through our veins as we prepared for this grand event was indescribable; it was by far the largest undertaking we’d ever embarked upon.
Yet, our jubilation was short-lived as we were compelled to cancel the event. The tempest of Covid-19 had hit, and with some attendees living with Motor Neurone Disease, we couldn’t risk their health or that of others. This decision proved prescient, as the entire nation soon found itself under lockdown.
Navigating the deluge of Covid-19 information felt overwhelming, especially with a vulnerable individual in our household. The initial days were challenging, but we gradually established a routine that worked rather well. I took it upon myself to finally delve into the books collecting dust on our shelves, while my husband tackled a thousand-piece jigsaw puzzle. I even ventured into the world of baking, creating delectable treats like Pistachio, Mascarpone & Salted Caramel Cheesecake, expanding my culinary horizons.
Our family embraced a comfortable routine, leaving little room for boredom, as we were acutely aware of the potential negative impact of the lockdown on our mental and physical well-being. Strangely, amidst the fear that permeated the air, there were silver linings to be found. Crime rates plummeted, the absence of traffic noise and reduced air pollution lent a peaceful serenity, and the environment reaped global benefits. In the evenings, we marvelled at the brilliantly shining stars, eagerly gazing at Elon Musk’s Starlink Satellites, forming a mesmerising trail of lights in the night sky.
The chorus of chirping birds grew louder in the mornings and evenings, while locals began to exchange smiles and greetings. The government’s allowance of one daily outdoor exercise activity—a walk down our street—was a small but cherished escape.
The highlight of our week became the Thursday night ritual of clapping at 8 pm to express our gratitude to the NHS for their unwavering dedication at the forefront of the battle against the virus.
During this challenging period, I received an email from our local neighbourhood watch community, ‘OWL,’ seeking volunteers to aid the elderly in our community. I noticed a glaring absence of volunteers from my own street and promptly offered my services, despite having a vulnerable person at home. With my children, all over 20 years old, to assist at home, I felt compelled to leverage my strengths and support those in need in my community.
I assembled a modest but meaningful list of individuals to assist—three aged over 90 and two over 70, all unable to collect their prescriptions and groceries. Venturing out with my homemade face covering and disposable gloves was admittedly daunting, but the thought of aiding the vulnerable overcame my fears.
A wave of altruism spread as numerous volunteers within the group undertook various tasks for both the vulnerable and the NHS. It was truly remarkable! My heartfelt thanks go to Vanessa Rousseau for her incredible organisation and for rallying volunteers to support the vulnerable. To acknowledge our collective support, ‘Three Rivers District Council’ and ‘W3RT Community & Voluntary Services’ graciously awarded us with beautiful certificates.
Simultaneously, as the nation grappled with the surge in job losses, many women sought ways to acquire new skills to re-enter the workforce and support their families. Some of these women reached out to me for advice on skill enhancement. Drawing upon my own experiences, I identified key skills applicable to various industries and set about creating short courses to help them. Additionally, I found myself guiding other women who aspired to start their own businesses by creating simple websites and hosting weekly webinars on social media usage.
In essence, the challenges of the pandemic underscored the empowering nature of my life experiences, both the highs and lows. They enabled me to navigate through this trying period and serve as a pillar of support as a wife, mother, daughter, sister, aunt, and friend.
Posted: June 6, 2020 by Susan Graham
It’s A Tough Life….Or Is It?
As if life wasn’t hard enough, now COVID-19 comes into the mix!
I am a 41 year old Sikh Punjabi woman living in London who is now having to adjust to online teaching of Mathematics at secondary school level. Having been brought up in a tight knit and fairly large family this phase of social distancing is also teaching me many new ways of living.
Let’s be honest 2020 hasn’t been a great year so far, our New Years resolutions broke before they even started, and the end is nowhere to be seen. So how do we stay positive in this situation or see the glass half full?
Having struggled with mental health issues almost all my life, aged 40-something I would like to think I have tried many options to stay ‘happy’. Battling with depression and anxiety was very challenging. It took me some time to realise I was a sufferer and more often or not I wasn’t aware I was going through a phase as it was not something I had been educated on. Some days, weeks, months or even years would go by and I would be ‘fine’ but then that shadow of darkness would come and suck me back into this hole. So, I educated myself on this topic and became more aware of the signs and symptoms and how best I could manage these cycles. From visiting Gurudwaras to watching numerous comedies, I have explored multiple avenues to make me feel better. It is safe to say some worked and, well, some were not so great (for me that is) however what I have needed to work out is which ones works best for me in this new lifestyle?!
1 in 4 of us in the UK suffer from some kind of mental health issues, predominantly depression or anxiety, and I am sure the current climate hasn’t helped these figures. So that is 1 in 4, 25% percent of the UK’s population of almost 68 million, 17 million are struggling with their mental health. A shockingly large number but also a comforting number to know when you feel you are alone in this ‘state of mind’.
So, what can we do to help ourselves from feeling lost, lonely, or stuck in this dark place that not many seem to understand? I have learnt several ways that work for me, maybe they will help you, too.
I want to share a few tips and tricks that have worked for me to get through these tough times and make life easier on those difficult days when you just do not see the point in anything.
1. Gratitude – spend 10 mins in the morning, afternoon and evening being grateful for the simplest of things. The fact you are alive, the birds chirping outside your window, the family around you or even having a roof over your head are amazing factors in your life. Being grateful for what you have helps you move away from thinking about what you don’t have.
2. Mindfulness – make sure that your MIND is not FULL of unnecessary worries or thoughts that you cannot control and try to become MINDFUL of everything around you. Be aware of the most basic things using your five senses which will make you appreciate the world around you. God (or the Supreme energy) has blessed us with the painting of life which needs time to be admired. After a long time or the first time for some of us we have this time. Aren’t we lucky!
3. Meditation – Last but not least is meditation. One of my favourite hobbies if you like is to try various meditation techniques. Meditation is a spiritual practice which has been practiced in one form or another in virtually every religion so there must be something in it, right? To me it provides me with an escapism from the outside chaotic world, the warmth of a colourful internal world and the chance to give my mind a break which is working overtime during the day and even at night when I’m sleeping. Though it takes time to achieve complete bliss and avoid any thoughts when sitting in meditation it most definitely gives me the opportunity to take ‘time out’ from the fast pace life and provides light in the darkness around me.
Ultimately by taking small steps we can work towards lifelong change.
There’s no harm in trying! ‘If you think you are too small to make a difference try sleeping with a mosquito’ .
(Dalai Lama)
By Aanika www.aanika.co.uk
Last Updated: June 6, 2020 by Susan Graham
Talking Therapy on the film festival front
In reaction to the Covid-19 pandemic and its impact on the mental health of artists and filmmakers, the annual Tongues on Fire UK Asian Film Festival (UKAFF) marked Mental Health Awareness this week with a new initiative called Talking Therapy tailored for the entertainment world.
As part of this unique offering, therapists will be at hand to provide a phone support service for artists in need. The service aims to offer emotional support, signposting problems, advice and information along with details of organisations and support available on a case by case basis.
“We are launching a much-needed free Talking Therapy service for artists working in the creative and media industries because during these difficult times, people are feeling anxious and isolated, worried about the financial uncertainty and in some cases the loss of loved ones,” explains Dr Pushpinder Chowdhry MBE, the founder of UKAFF and a qualified psychotherapist.
“We would like to support artists and filmmakers by helping them explore, through Talking Therapy, a range of options that are out there but most importantly being there to listen,” she said.
As part of the service, artists will be able to access a safe space to speak in confidence with a therapist, who will listen and consider possible options.
The support line is open to help UK-based artists dealing with issues such as bereavement, depression, anxiety, stress, worry, feeling lonely and isolated, having relationship problems or suffering domestic abuse.
To access the therapy, artists can call a dedicated helpline (07930 491915) and leave a confidential message providing contact details and their preferred time of contact. A therapist will then call back within 24 hours.
Tongues on Fire is a not-for-profit organisation that provides a platform for independent film and arts from South Asia. It celebrates Indian culture, its vibrancy and its many dimensions through storytelling, live events, master-classes and cinema screenings.
*Info: www.tonguesonfire.com
Last Updated: October 5, 2020 by Susan Graham
How To Make A Face Mask In 1 Minute – No Sewing!
As an experienced carer for MND, Heart, and Parkinson’s Disease patients, I understand the need to wear a mask around the vulnerable for their protection.
During this global Covid-19 pandemic I am currently a volunteer helping the elderly in my community who are self isolating and due to the shortage of masks I made some washable and reusable face masks. I was inspired by a study carried out by Cambridge University in 2013 (Cambridge Study) which examined homemade masks as an alternative to commercial face masks.
Please share this video as an article in the NY Times reports ” poorer countries losing out to wealthier ones in the global scrum for masks”. The shortage of face masks is worldwide and the developing countries are struggling, so we can all help by sharing our techniques.
This method shows a quick and simple way to make a face mask and most of all helps reduce the spread of this ugly virus. Stay Safe.
Last Updated: October 5, 2020 by Susan Graham
What You Need To Know About Covid-19 If You Have Motor Neurone Disease
MND Association released a short video to help those living with motor neurone disease or caring for someone with motor neurone disease to understand the implications of the coronavirus.
Please click on the link below:
https://www.mndassociation.org/mnd-and-coronavirus/