Isolation and mnd

[Julie dawn]

Does anyone feel isolated by their illness. I feel like I am all alone living each day like an existence not a life. Maybe it is harder as I haven't got a partner to bounce off. Is there any other single people coping with mnd.

[Lynne K]

Julie, I'm sorry that you feel isolated. I have a husband and still have cabin fever. If you were nearby we could meet up and bounce off each other. Is there anybody living near to you with MND, ask your OT then ask your OT to pass on your contact details. I was happy to meet Dina this way, Lynne

[Terry]

Hi Julie and welcome to the forum;

I have a partner and get to see and communicate with some people but I do lack the social interaction because of MND.

There are people here that live by themselves.

I hope you have family or friends nearby and do all you can to get them involved. Try to be happy with them if possible.

You probably can get a Mnda visitor and Mnda Branches around that have meetings etc.

Also, you probably won't want to hear this but hospices are normally good places. They have specialists that will help you live life and there is normally a good social thing there.

Please feel free to ask any questions or just share things with us.

Best wishes, Terry

[panniertank]

Hello Julie. I am sorry you have MND and feel isolated. I maybe understand how you feel because I live alone without a partner and I feel very worried about how I am going to cope. Do you have a specialist MND clinic. I have one in my area and the support from that clinics staff is one of the main things that gives me any confidence at the moment;- at these early stages I have mostly had input from the OT, physio and social worker. I was also able to apply for a PIP, which is another thing that gives some confidence, especially now as I am at the stage of needing some social care and other things to get me out, so the PIP will help pay for those things.
I maybe understand what you mean by feeling that you are just existing and not living your life. There are some things I have to plan ahead for but I mostly live or exist one day at a time. My best days and when I live a bit are when I am in denial and think that I will be one of the extremely rare people whose MND goes into remission or it will progress slowly and the medics discover a cure or new treatment. I wish the same for you and every MND sufferer. Take care.

[Julie dawn]

Thank you all for your advice. It does help to have others opinions. I have no family but I do have my two children. But for obvious reasons I don't like to burden them with these issues. I do have a neuro rehab team but I don't get much practical help. I have to do all the same tasks that I did before my diagnosis.
Maybe I need to be a bit more assertive. For some reason all I ever get is " you are strong" when inside I feel like I am breaking.

[Sheila]

Hi Julie dawn, and welcome to this very friendly forum. I have a husband and son, but I would like to meet someone in the same situation. There is always help and advice on here.
Yes, I hate it when they say you are brave, when I think ( no I don't want to be like this. )
Sheila.

[Sheila]

Hi panniertank, I am glad you are getting some help now. And feel a little more confident. We can only take one day at a time, and pray for a cure.
Take care
Sheila

[Julie dawn]

Sheila where are you based. I am in Wolverhampton. I don't feel like anyone gets what I am going through. I don't talk about my illness much. But I have lost friends because they don't want to see my illness progress. It can be quite lonely.

[Gillette]

Hi Julie and welcome to the forum that no-one wants to need.

Yes, MND is a horribly isolating disease, partly because it is rare, but also because everyone’s MND journey is different. I certainly felt very isolated when I was an in-patient at the time of my diagnosis and have since met other sufferers who feel similarly isolated.

You may find it helpful to go to a local MND meeting but you might find it overwhelming. Terry’s idea of an MND visitor could be a good place to start but I think you’ll find this forum is a wonderful place for support and information AND we don’t mind if you come and have a good old moan! We’re here for each other and we understand how it feels.

[Sheila]

Julie dawn! I am in Somerset but we can chat on here. I have 3 friends, two of them know and were shocked!! I have lost my voice now and it's horrible not being able to chat normally. The flow of conversation has all but gone unfortunately. Yes! it is lonely and scary. I use this forum quite a bit to get advice and chat, we are all in the same boat.
Take care Sheila

[Gillette]

Julie dawn! I am in Somerset but we can chat on here. I have 3 friends, two of them know and were shocked!! I have lost my voice now and it's horrible not being able to chat normally. The flow of conversation has all but gone unfortunately. Yes! it is lonely and scary. I use this forum quite a bit to get advice and chat, we are all in the same boat.
Take care Sheila

Hi Sheila, whereabouts in Somerset are you? I lived in Wellington and then Chard before moving up to Greater Manchester.

[Sheila]

Hi Dina, I remember you saying. I live near Bridgwater.
Sheila x

[Julie dawn]

Thank you Sheila. I am sending lots of love and strength your way.. take care. X

[Julie dawn]

Thank you gillette . You are right about the mnd meetings ...I don't feel ready for that yet. I do feel like if I don't keep asking for help I don't get. But most of the time I haven't got the energy to keep asking. I have a disabled daughter to care for and that takes most of my energy. We don't get any help from anyone with this.
I really appreciate your input and advice thank you. Sending hugs and strength your way.
Take care