Together, We've Got This 🩵
- Sam
- Feb 10, 2024
- 1 min read
Updated: Feb 15, 2024
Having been diagnosed with Motor Neurone Disease in March 2022, there was and still are very few places where you can find what is out there to support you. So I wanted to create a space where I could share all of the things I have found useful. I hope they help you in supporting you in the early days of diagnosis and to help you maintain a quality of life.
Motor Neurone Disease Association (MNDA)
It took me time to reach out to the MNDA as I did not want to speak with them at first. I was worried it would be information overload and that is not what I wanted at first. I was soon contacted by Esther from their fundraising team, and soon after I spoke with somebody in their communications team. I made it very clear that I did not want to know the facts and figures about MND, if I wanted to know that I knew that I could locate these on their website.
Everybody whom I have spoken with at the association has been so caring, compassionate and sensitive towards me. I have regular catch ups with Esther and the other teams. This has enabled me to share my story in many different ways throughout many campaigns and projects they have run. I have found this personally rewarding and they have given me a platform to share my story, so I can help others in a similar position. I would recommend reaching out to them to chat through how you're feeling and so they can sign post you to the various areas they can support.
They have lots of useful support and information, including;
MND Nurse/MND Coordinator
Following my diagnosis and referral to the NHS neurologist (as I was diagnosed privately), I was soon introduced to my team that included a specialist MND nurse. These services will vary depending on your location as prior to our house move the nurse would visit on a three monthly basis. Whereas the location I am based in now, I have only met the coordinator once, but maintain email communication for anything that is needed.
This is your opportunity to speak with them so they can support you and can either arrange what you need or to signpost you to the relevant service. My specialist nurse helped with referring me to the department of work and pensions for my personal Independence payment application, she was super helpful and I had approval of my allowance within several months.
Occupational Therapist
I was assigned an occupational therapist who would coordinate their visits with the specialist MND nurse. Much like the nurse, they would visit every three months and should I need anything such as an inflatable bath pillow, they would be able to arrange this and referred me to the NHS wheelchair service. This took months to arrange as there was a delay with the service and took almost 6 months, so be sure to discuss this at some point with your occupational therapist.
Neurologist
Following the referral from my private neurologist to the NHS, I was assigned an NHS neurologist appointment within several months. I see my consultant roughly every three months.
She normally undertakes an assessment of my symptoms and asks how things are going and anything that I wish to discuss at that time. The specialist nurse and occupational therapist would also feed into the neurologist so there was a "joined up approach". Personally speaking, I don't like going to the hospital and is just another reminder of MND. So I am somewhat pleased that I don't have to go too often and can forget about the appointment soon thereafter.
Respiratory Unit
My neurologist referred me to the respiratory unit in London and I was invited for an appointment within 4 to 6 months. This did feel daunting that I was being referred for a respiratory assessment already, but this was the opportunity for the respiratory team to see where I was at presently, and to monitor me.
They initially wanted to see me in six months as my results were pretty strong, however I now see them on a 3 to 4 month basis and they undertake a number of assessments at each appointment. This usually coincides with measuring oxygen and carbon dioxide levels, as well as assessments for lung function and to see the strength of my breathing muscles.
I have undertaken several oxymetry tests, which are tests to record your stats overnight. These stats recently revealed (Jan 2024) that my oxygen levels dip overnight and therefore we agreed for me to be ventilated overnight in order to support me. This did feel a little daunting at first, but I am slowly adapting to this new normal.
Financial
Personal Independence Payment (PIP) - previously known as Disability Allowance
I am in receipt of the higher rate, personal independence payment. This used to be referred to as the disability allowance. This is money for you to use to support you financially as with a disability, you will need to purchase things to support you, and this is exactly what this money is for. I have found this extremely beneficial and it has enabled me to have and maintain a quality of life that I am currently happy with. This can also help with Motability vehicles. Request that your specialist nurse assists with your PIP application and any funds will be backdated to when the claim was first logged.
Pensions
This is not something to investigate immediately, or to be overly worried about, but do reach out to any pension provider about their policies with regards to releasing any funds and under what circumstances they would do this. This will vary by the provider and you may need to talk to them to share the news of your diagnosis, so they can properly guide you.
Life Insurance
This is something that I regrettably did not have in place prior to diagnosis and I wish that I had invested in life insurance, as this would have provided some financial assistance. I have not found any providers that were now able to provide life insurance cover, but if you do have life insurance, inform them regarding your condition.
Will
I did not have a will in place prior to diagnosis, and this is only something I arranged several months after my diagnosis. This is something the MNDA can help you with via the following link, or you can privately fund your own. This has given me the comfort of knowing my final wishes and arrangements regarding my finances et cetera will be followed. Please shop around before purchasing, I personally found the Martin Lewis website helpful in being able to breakdown many of the different providers and what they do and don't offer.
Power of Attorney
This is something that I do not have in place at present, but something we will soon arrange to ensure the power of attorney is in place when I am no longer able to make the decisions or I'm not mobile enough. Further details can be found here.
Travel
Insurance (info received from MNDA)
It can be difficult to obtain reasonably priced travel insurance when you have MND. Many travel insurance companies have limited knowledge of MND and therefore do not always consider individual circumstances, assuming instead that travel for anybody with a diagnosis of MND will be problematic.
Obviously, this is not the case, but we do appreciate that this situation can cause a great deal of frustration when planning a holiday. It is wise to only approach companies that offer cover for pre-existing conditions. It is not possible for us to provide a definitive list of companies that will guarantee a reasonable quote for travellers living with MND, because they frequently change their acceptance criteria.
A company that provides a great quote today may not provide one tomorrow. However, we are aware of several companies who have recently been confirmed as providing travel insurance for people living with MND. Please see below:
Tel: 0800 170 7704
Tel: 01274518393
Tel: 0345 90 80 161
Tel: 08082810098
Tel: 0800 294 2969
Tel: 0800 999 3333
Tel: 0800 077777
0330 024 9297
All the above cover Europe and most cover Worldwide also.
We would advise that you buy your travel insurance as soon as you have booked your holiday. With pre-existing conditions, it may take a bit longer to get it sorted out. Also, something may happen, which could affect your holiday and at least you will be already covered. You should get at least three quotes for comparison, and when your policy arrives, please check the small print to ensure that any incidents arising from MND or other medical conditions you may have are covered.
Blue Badge for disabled parking
This can be applied for from your local council and you will need to submit an application to them which will take time to process. From start to finish, the entire process took six months until I received my blue badge. They required a letter from a medical professional to confirm my diagnosis and my mobility needs. My specialist nurse put together the letter and once submitted, the next day, my application was approved. I would submit this as soon as possible as many councils are likely to be inundated with applications and it will take them time to process.
Disabled Persons Railcard
You can apply for a disabled persons railcard and you will need to provide them with the necessary evidence of your health condition. The railcard provides you and a companion with 1/3 discount off your entire travel. This is UK wide, and you can achieve some big discounts, which we have found every time we travel via train.
APCOA - SouthEastern train station parking
This will vary depending on your location. APCOA are the service provider who manage the parking for all south eastern trains car parks. You are able to apply by providing them with a copy of your blue badge and in turn a specific vehicle is provided with free parking at all of the south-eastern car parks. This in itself is a huge benefit and we often travel via train utilising our free parking. The permit lasts for one year and can be renewed annually.
Bus Pass
You can apply via your local council for a bus pass, which will provide you with free travel across the entire UK network of buses during off-peak times. Once again, this will provide you with free travel which will save more money. For anyone based in the London, you can also receive discounted taxi fares, more information is available here.
Going Out
Access Card
The physical card acts as a photo ID that can be used to easily communicate your access requirements to events and venues, so that the venues can provide accessibility to the needs of their visitors. It also works online with other platforms like ticketing systems, to unlock the access facilities you need.
The card shows a photo ID and translates a persons disability or impairment into symbols, effectively highlighting the barriers they face and the reasonable adjustments they might need.
The Access Card app provides you with a personalised directory of venues, with first-class accessibility information to help you plan your trips. We developed the Access Card in response to frustrations shared by disabled people and live music promoters in how disability was evidenced, and how needs for reasonable adjustments were communicated.
Theatre Accessibility
We are huge theatre lovers and were pleased to discover that many of the theatre companies in the UK offer discounted rates for disabled patrons. I have linked below the theatre companies that we have used who offer discounted rates. For instance, I was able to purchase two tickets to Moulin Rouge in the West End for a total cost of £50. A little research into the seat directly next to me confirmed its cost at £125 per seat, a huge saving and perfect seats. We have gone on to enjoy lots of theatre since and have paid significantly less than the advertised cost.
Also, keep an eye out for details of relaxed performances, theatre productions often share details with plenty of notice. These performances are adapted to suit the needs of the audiences and things such as loud noises, bright lights et cetera are adapted to the relaxed performance.
Cinema card
CEA offer discounted cinema entry with the use of their card. We have been able to use this alongside the showcase cinema card at our local cinema and paid less than £10 for two adults to see a movie!
Technology
iPhone Voice Control
Following a recent visit from environmental control, I was informed about the impressive technology offered by Apple for iPhone users. For anyone with restricted mobility, iPhone users are able to activate the voice control function which enables you to navigate and use your phone without having to touch it. Having struggled for a few months to not only pick up my phone, but to use it for social media, messages, telephone calls et cetera, this technology has been an absolute game changer. It provides me with a quality of life and independence. Further details can be found here.
Support Groups / Organisations
Support Groups / Organisations
There are many groups online, and in person that can help you, I have recently launched a Facebook group for those diagnosed in the younger generations and to support those living with MND called ‘My MND Mates’.
I have linked other support groups/organisations that you may find of useful;
Clothing
Footwear
With decreasing mobility, I soon found that I struggled to tie shoelaces and became fearful if I was out in public and not able to tie my shoelaces. I was made aware of some accessible footwear which had been designed by Nike called Flyease. They are trainers that have been designed with the disabled community in mind and are totally hands-free to put on and remove. I found them super easy and manageable to take on and off and they also look pretty cool too.
Mobility Aids
Cool Crutches
I did not wish to have an NHS walking stick and found details online of Cool Crutches, a UK based business that sold crutches and walking sticks with many colourful designs. I am now the proud owner of two. For anyone with a chronic illness, you do not need to pay VAT and need to complete a form on the website so that it is not included with the sale.
I hope you have found the above helpful and I will continue to update with anything as I discover it. If there is anything I have missed, or if you discover other useful information that you would like to share, please get in touch so I can update the information so it remains up-to-date.
Please get in touch if you have any questions, I am more than happy to help.
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