My husband was diagnosed on 4th Dec ☹️

[Spiersey]

Hello all, from reading your posts I think we have been lucky (you know what I mean) to have been given a very quick diagnosis, hubby first saw GP in August and received diagnosis of Spinal Onset MND ALS 4th Dec following an MRI and EMG. Out consultant is apparently one of the leading people in MND research and heads up the dept at Addenbrookes hospital in cambridge for which we feel quite reassured.

Symptoms started during a walking holiday in August and he started suffering severe cramp in one leg, from now til then he has almost totally lost the use of his that leg, he is starting to fall over that foot a lot and he has constant nerve twitching across his body.

He has decided to start the Riluzole and is awaiting the pharmacy to fill his script.

We have two teenage children and this news has absolutely shattered our world which I am sure all who reads this post will know only too well.

I would be grateful to hear any advice regarding practical things we can do now, we have no idea for example what might happen financially when he can no longer work. Anything really as although we have the clinic and the MND Association for advice there can be nothing better then hearing from people first hand who are in or have been through this position.

Thanks
Claire

[Barry52]

Hello Claire and welcome to the forum family.

I’m sorry to hear about your husband and whilst this disease is bad news for any family I always feel it’s especially unfair for younger people with dependent children. I wrote a list for new members in our local group and it is not applicable to everyone but you might find it points you in the right direction.

Best wishes,
Barry

Guidance notes for new MND patients

Symptoms and their treatment
* muscle weakness, with*loss of muscle mass (wasting), and movement and mobility problems - massage, light exercise when possible and mobility aids such as walking sticks, crutches, walkers and wheelchairs will help
* muscle cramps and spasms, including rippling sensations (known as fasciculation) - antispasmodic medicines like baclofen can be prescribed
* speech and communication problems - voice recording and speech app on a tablet or phone
* swallowing difficulties, affecting*how you eat and drink - drink thickeners help, change in diet to avoid certain foods and chin tucked in when eating
* saliva problems, where thin saliva pools in the mouth or saliva becomes thick and sticky - medication is available to reduce saliva and some drinks such as pineapple or guava contain an enzyme that breaks up mucus
* weakened coughing, which makes it harder to clear the throat - a cough assist machine is sometimes advised
* breathing problems, which can lead to breathlessness and fatigue - headaches after sleep is often an indication of retention of CO2 in which case a breathing assistance machine is advised
* emotional lability,*with inappropriate emotional responses, such as laughing when feeling sad - antidepressants such as citalopram are often prescribed
* Weight loss - consider a feeding peg
* Loss of mobility - contact wheelchair services. Consider hoists to assist carer.

Care guide i.e. OT and care team including dietitian, speech therapist and physiotherapist.

Benefits - contact MNDA support to establish benefits entitlement.

MNDA and branch support - branch meetings are a valuable source of information and companionship. Association Visitors can come to your house and offer advice.

Technology aids - tablets with speech apps help to communicate. Eyegaze computers help when hands and arms don’t function.

Social Services - may offer grants for home adaptations (means tested) wheelchair ramps etc.

[Lynne K]

Hi Claire. Sorry about your husbands diagnosis. Finance advice is to apply for PIP at the higher rate. Get the hospital specialist MND nurse's support for this application. If he's paid up with National Insurance he ought also qualify for ESA (Employment Support Allowance). They ought put him in a group that doesn't need to attend appointments. He ought to have local support services ie physio; speach therapist; OT (Occupational tional Therapist, and wheelchair services. The OT is a good starting point. A diagnosis is always very hard at the beginning, knocks everybody for six. But it tends to get emotionally easier with of course the occasional melt down. Take care. Lynne

[Spiersey]

Thank you Barry that is very informative ��

[Spiersey]

Hi Lynne many thanks for your reply. Can he get PIP even though he still working? I always hear stories of how difficult it is to get PIP awarded even for those in great need? We have an OT visit g this week so it’s good to hear they can advise too x

[AndyB]

Hi Claire
Sorry you have to be here, but “welcome”

PIP is not means tested so your husband should be eligible even though he is still working. I’ve been in receipt of PIP since diagnosis in 2016 and I am still working until the end of this month when I will be retiring due to my ill health.

Your husband may want to bank his voice just in case. I used ModelTalker which you’ll find if you google it. It’s a bit of a pain to do but at least if he does lose his voice he’ll have it available for use with speech software.

He’ll also need to notify the DVLA, though I assume his neurologist has already told you this.

Best wishes
Andy

[Kayleigh]

Hi Claire and welcome,

Sorry to hear about your husband's diagnosis. It was extremely difficult for me and my family to deal with when I was diagnosed last year, but accepting help and support has enabled us to move on with living our lives as fully and as positively as possible.

The diagnosis can be a terrible shock for the whole family and there is a lot to come to terms with. There is a lot of adjustment to make, but you will find there is a lot of support availble for you, your husband and the whole family - e.g. on this forum, from the MNDA, from your MNDA Regional Care Devlopment Adviser (RCDA) and at local MNDA group meetings. Local hospices are also very supportive and a great place to get advice/info about financial and practical matters, and many of them offer family counselling (some hospices have their own website).

If you haven't done so already, you may wish to have a chat with your local MND Adviser. The Advisers are very knowledgeable, friendly and supportive. Contact details are below:-
https://www.mndassociation.org/getti...ment-advisers/

Regarding PIP, you may find that this booklet helpful (it's quite basic, but provides a general overview):-
http://https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/757825/pip-what-it-is-and-how-to-claim-it-easy-read.pdf

As already mentioned by Barry and Lynne, there are many medical professionals who your husband should have access to ( (free of charge) eg an MND nurse, a speech and language therapist, a physiotherapist, an occupational therapist and a dietitian. Access to these services may vary according to what services are provided in the region where you live - if you contact your Regional Care Development Adviser (RCDA) that person will be able to tell you what support should be available for your husband and, if necessary, may be able to access these services more quickly for him.

Also on the practical side of things, your husband may wish to contact the local council for a 'needs assessment'. Some items provided by the local council are provided free of charge - but others, (such as funding for carers at home, and home adaptations, such funding for a wetroom) are means tested. There is further information about the 'needs assessment' and what it covers in the link below:-
https://www.nhs.uk/conditions/social...ds-assessment/

I hope that your teenagers are OK - some schools/colleges can be particularly supportive in this situation - and many offer 'pastoral care', counselling or similar, for children/teenagers who would benefit from it.

Best wishes to you and your family.

Kayleigh

[Kayleigh]

Hi again Claire,

Just in case your husband wishes to consider 'voice banking', a link to the MNDA's info about 'speech and communication', is below:-

http://https://www.mndassociation.org/about-mnd/living-with-mnd/speech-and-communication/

Also, your husband's weight should be monitored because it is important to maintain a healthy weight and not to become underweight. Dietitians often advise people with MND to include more fat in their diet as a way of boosting their calorie intake e.g. use butter instead of low fat spreads and use full-fat milk instead of semi-skimmed or skimmed. Sometimes issues with swallowing food/drink can cause weight loss and so a person's diet needs to be adjusted to include 'smoother' and 'softer' food that is easier to swallow. Nutrition drinks such as 'Complan' and 'Fortisip' are useful for boosting calorie and vitamin/mineral intake, and a GP might prescribe them for your husband, if he needs them. For further info, a link to the MNDAs info about 'swallowing, eating and drinking', is below:-

https://www.mndassociation.org/about...-and-drinking/

Best wishes
Kayleigh

[Deb]

Hi Claire,
I am so sorry you need to be here but welcome to the forum. The diagnosis is heartbreaking for the whole family. In my case it had been suspected but to have it confirmed was still a huge shock and for a while I was in denial .

Initially, there was huge support from my local MND team and I wasn't quite ready to look ahead and think about what would be my changing needs. However a few months down the line we had the house adapted and accepted help and mobility aids. I guess it is better to do this before it becomes an emergency. There is a very good benefits advisor at the MNDA who will talk you through the process of applying.

Now I try to make the most of life, laugh and take each day as it comes because noone knows what's round the corner. It is, however ,hard for our children and our parents to accept and my grown up children needed time to adapt too... They are brilliant at helping and making us laugh now.

I hope you have lots of support. You sound like a really close family.
Take care of each other in these early days,
Love Debbie.

[shrew]

so sorry Claire. Theres lots of advice on here. My Husband was diagnosed 17/7/18

[Lynne K]

I believe that PIP is available even if your husband is still working but it's a mine field and he might have to go to interviews and be offerred a lower rate. Speaking with a specialist benefits advisor is advisable in your husbands situation. I can only speak of my own experience. I applied for PIP and ESA immediately after I gave up working. Lynne

[Kayleigh]

The government has information on its website about PIP and ESA (links are below) Also, at the end of the first page about PIP, there is a link to video guides about PIP.

https://www.gov.uk/pip

info about ESA:-
http://https://www.gov.uk/employment-support-allowance

[Kayleigh]

MNDA has information in its website about getting Benefits Advice, link is below:-
https://www.mndassociation.org/getti...nefits-advice/

[Kayleigh]

Re: Carer's Allowance - here is the link to the information on the gov.uk website:-

https://www.gov.uk/carers-allowance

[Fru]

Hello Claire,
I am so sorry to hear of your husband's diagnosis. We are Cambridge too. You will get all the info from the Cambridge centre and from the wonderful people on this forum. If you would like to pm me I would be happy to talk about anything.
Best wishes and hugs
Fru xx