What Now?

[Pixielee32]

Hi, I was diagnosed last Friday, I was told ALS 😢 I feel ok. Thank you sooo much to all the people on my last post that welcomed me here 😘 After getting the worse bit over, telling my teenage children who have been so brave and amazing, I’m now in a bit of Limbo. My Neurologist has said he wants to do bloods and another spinal x Ray (I can’t remember why) he wants to see me in 4 weeks at the MND clinic and wants to put me forward for a new trial. He said they have an amazing care team who will be in touch. But I don’t know when? I don’t know who will be in touch either! Will they call? Pop in? Who are these people?
In the mean time I have a million questions, who do I ask?
thank you for reading. Hugs to you all ❤️

[WheelsOfSteel]

So sorry it has been confirmed, but you seem to have prepared yourself well to see it coming.
These early times after diagnosis can be a bit of a whirlwind of connecting with the care team. You should be contacted by the various specialists that will handle your care going forward. Expect people like Physiotherapists, Occupational Therapists, Speech and Language, Palliative care, dieticians, etc. I also have a wonderful MND specialist nurse who visits me at home regularly and who acts as my main point of contact to ensure it is all going smoothly. Try to be well organised with your calendar appointments and get contact details from everyone.
You should also look into benefits you may now be eligible for.
If you have any questions about how it all works - please ask RIGHT HERE!
We have all been through it, and there is a lot of friendly advice available.

[Pixielee32]

WheelsOfSteel Thank you so much for your quick reply. That’s a lot of people! That makes me feel better knowing the help is there. Plus this forum helps so much ❤️
I am concerned about money, I’m getting SSP at the moment and no savings, Do you know who I could call to get the ball rolling or wait for someone from the care team to advice?
Also, as you can imagine, I want to go on holiday with my family asap, would now be best or after I’ve met everyone and had my further tests? X

[denise]

Get a diary and write everything down. Makes life easier. You will need a ds1500 which was done by our mnd nurse. It seems to vary who does this.

If you want a holiday I'd take it. Have fun and enjoy yourself. Dont sit there waiting for people to call.

Love and lots of hugs
Denise xxx

[Bowler]

Pixielee32 the MND association have a dedicated benefits team that will help to guide you. Here’s the link

https://www.mndassociation.org/support-and-information/our-services/benefits-advice/

[Andrew]

Pixielee32
You could contact the neurologist and ask him for the contact details of your MND care coordinator. In my case at the RVI in Newcastle this person works directly for my MND lead consultant and is the person who acts as central point of contact.providing contact details for specialist care team.
I found in applying for PIP Personal independence payment that I need a form DS1500 that was provided by the lead consultant on order to fast track the application. The benefit is not backdated to diagnosis date and is just effective from the date of the telephone application. The benefit is circa £96 a week but dependent on your mobility issues can be increased by a further circa £58 a week.
The MNDA booklet contains a good contact checklist which I have printed off and completed as and when I meet the various specialists . This is now filed I n the front of an A4 lever arch file where I have different sections for the various paperwork from each specialism.
I would suggest you don’t wait for people to contact you but chase up the contacts. I have been fortunate with the level of support I have received but I see from the forum this can depend on where you live.
if you have trouble contacting the Neuroligist you may find your GP can provide some contact details for you
,for your main care coordinator ,as the GP should have received a copy of the Neurologists medical report.

[Pixielee32]

Thank you so much everyone 🙏🏻 Xxx

[Patw]

get the ds1500form as quickly as possible I had to fight for mine in the end i contacted hospice they got it straight away

[Ellie]

Pixielee32 Debbie, might be worthwhile Googling your MND Clinic get a sense of who's who and what's what before they start contacting you and before your appointment. xx