What to do next?

[Ellie]

... I first noticed something was wrong when my foot started to slap on the floor that was over a year ago, nothing much else has happened ...

Relatively speaking, that's a very good sign.

If you have life insurance, mortgage protection, critical illness insurance etc, check if you can get a payment. xx

[shelly21]

Gumshied12 Its a mega shock. Telling family is also very hard. We understand re the financial burden.

these next few months will be busy. There are lots of medical departments involved in our care.

A good occupational therapist is great plus your mnd nurse.

Re money all I can say is try dealing with the shock and talking to family first.

[Gumshied12]

Thanks everyone for your support, only just on Tuesday got the bad news off the consultant, I don’t even know what type of mnd I have yet . Waiting for another appointment to see a specialist team then hopefully I will know more, iam only now in the process of telling my family. I don’t want pity I just want everything to be as normal as possible for now. I first noticed something was wrong when my foot started to slap on the floor that was over a year ago, nothing much else has happened only muscle fluctuations.As for work I don’t know it’s the financial side that worries me iam not a millionaire I work from pay packet to pay packet.

[Johnny5]

Depending on how fast your progression is, you should figure out what to do. If your progress is slow, and you have time to do things, how is your financial stability? Is work needed, or is it time to travel, see things you wanted to see all of your life, visit distant friends and family, or just spend time with your loved ones? If your progress is fast, think about what is to come, and study up on things that need to be done before you are not able. Maybe join a clinical trial even.

The one thing you do not want to do is become depressed. We do not have time for it. Depression tends to speed up progression and having a positive and cheerful outlook actually extends life (and even if it didn't, it sure makes it a lot easier to live with). Live for today with joy in your heart and share that with those who are around you. No matter how terrible this monster is, it is our choice to be the light on the hill or to hide under a basket.

[Ellie]

A warm welcome to the forum Gumshied12

Stop working or carry on any advice would be welcome.

Listen to your gut - taking your age, job, type of MND you have and its (likely) rate of progression, finances and family situation into consideration, what will suit your circumstances?

Love Ellie xx

[Madge]

Gumshied12 i am sorry to hear of your diagnosis. I worked for a year after being diagnosed. It all depends on your job whether you can continue to work but you may want to chat to your employer as they may have health insurance cover. I used to travel by train for work and the train company arranged for someone to meet me in the morning and evening to help me on the train, they were marvellous. Also my firm arranged for a taxi to pick me up from work to take me to the train station in the evening. Another thought is to think about applying for a blue badge and a universal key to use the disabled loos for when you are out. If you can work carry on, your body will tell you when to stop.

[Tabbycat]

Gumshied12 a warm welcome to the forum.
I first had symptoms in 2017 and continued working for 3 years with the support of my employer and Access to Work (see Lcfcno1fan above) many changes where put in place as my strength and mobility declined.

Overwhelming fatigue was the reason I stopped working. I opted to take ill health retirement in May 2021 after being off sick for 12 months. I didn't get my diagnosis until August 2021.

[LindaB]

Gumshied12 welcome to the forum.
I worked for about 6 months post diagnosis....however my increasingly deteriorating voice became problematic. I'm currently on sick leave....heading for retirement.

Your the expert in your situation and as you see we are all very different.

Look forward to hearing from you.

😉

[Olivia H]

Hiya
Take your time to consider all options. I worked for over 5 years post diagnosis, part time and with adjustments. You will qualify for PIP whether you work or not. Due to increases in workload, decided had enough and qualified for ill health retirement, which also has been around 5 years, so 10 in total, but I still keep busy at home with other interests. You may be able to adapt your job/work from home?
All the best.

[PeterPan]

Gumshied12 Hi, first advice would be to take your time before making the decision. One step at a time.
Factors that might influence your decision include your age, family circumstances, whether any pension schemes you’ve contributed to offer an ill health early retirement option, your savings, lifestyle expectations, housing status etc.
Personal Independence Payment has been mentioned (if you’re under state retirement age), New Style Employment Support Allowance (means tested) is another option if you’re physically or mentally unable to work.
I’m sure the MNDA benefits helpline could help you by providing more information.
Sorry you’ve had to join us in the forum. Best wishes

[matthew55]

Welcome. We have been there. We are here for you

[Lcfcno1fan]

Hi there, sorry to hear about your diagnosis 😔
I continued to work for three years after my diagnosis and was able to make some adjustments to be able to continue to use the office and work at home. Your employer is obliged to make ‘reasonable adjustments’ to allow you to continue to work for as long as you feel able. There is also a government scheme to help you and your employer access some grant funding and equipment should you require it https://www.gov.uk/access-to-work

Good luck, James.

[DeeH]

HI

as others have said, it depends on your job, on your feelings.

My mum was diagnosed with Alzheimer's at 56, the consultant said to her,

"Do you want to spend your physical and mental energy on your work,
Or on your family and friends and enjoying life."

This obviously depends on how you feel, I wouldn't make any decisions at the moment about work.

I would apply for PIP, which you can have and still work (non means tested). Do it via the DS1500 form (fast track) as doing it normally is soul destroying and time consuming. Also you automatically get higher rate.

Many people can continue working part time with accomodations.

Sorry you are now a member of this club.

Great support and advice on here.

[Hope]

Sorry to hear of your diagnosis but welcome. You will get a lot of help here. I have continued to work, although from home. It gives me a sense of ‘normality’ to my day and obviously an income. I would advise you to wait a little while before making a decision, you need time to adjust to the shock of your diagnosis. As Shelly advises, you should be fast tracked for Personal Independence Payment.

[shelly21]

Hi It really depends on what you do. Maybe take time for the shock of your diagnosis to sink in. I will say that you can still claim pip and still work.

Could your employer make alterations for you? Can you take paid sick leave whilst you come to terms with things?

Can you ask your mnd nurse for the ds1500 form. It fast tracks the pip application. £156 a week certainly helps me.