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New to this, and looking for some friendly advice/shared experiences

Hi everyone, I’m new to posting on here, but have been reading other people’s stories and advice on here for some time. My mum was diagnosed with primary progressive MS just over 2 years ago, although docs reckon she had it for about 7 years prior to her diagnosis. Previous to that my father had been ill with cancer on and off for about 5 years (he came out of remission just after i started going to university). my mother was carer for my dad alongside my younger brother, and I tried to help out when I could when I came home. She was diagnosed a couple of months after my dad died. Despite all this, she has managed to remain very independent. She has an adapted car that she can drive sometimes, and also goes to work a couple of hours a week. shes fine with showering etc, and i only have to help her with clothes on a really bad day. My final year at university was also my brothers first year, and so she spent a year living by herself managing to get along very well with weekly help from a couple of my aunties. I moved back home about ten months ago. Shortly after this, my mum began to struggle a lot, and took some time off work due to stress (her workplace did not really have the disabled facilities in place that she needed). She’s recently gotten a bit better and has gone back to work. I normally cook her dinner every night and do the housework when I can. My aunts used to come over once a week to help a bit but that has dropped off in recent weeks.However, I’m finding it particularly difficult to juggle working full time, alongside seeing my friends when i can alongside caring. The caring aspect is mostly fine, but I worry a lot about leaving my mum alone in the house of an evening. I worry that she might get lonely, or that she’ll fall over or something, or not be able to make it to the toilet in time. We find it hard to spend proper time together, as she gets quite tired. She gets quite frustrated sometimes, and so often doesn’t feel like doing anything especially if she is feeling anxious or depressed. We have lots of good times together of course, but there are definitely low points too. I often get myself quite stressed and upset thinking about what could happen in the future. I’ve recently considered visiting a counsellor to help with this anxiety but its not something I’ve gotten round to yet. I also find it very hard to talk to my friends about this, as we’ve all drifted apart in recent years and I don’t think they really understand where I’m coming from most of the time. I was just wondering if anyone in a similar situation had any advice? I love my mum to pieces and I just want her to be as happy as possible. I’m 22 and she is 47 if that helps at all.

Hello I have read your post and I just want to let you know your not alone I’m 24 and my mother has ms my dad was the main carer but he has up and left for someone else’s he wants to still be around and help but I’m not shore that will work and I know I will soon become the carer for her which I realy dont mind as I love my mother this is very recent and I am just looking for advice for the future what I need to do basically where to start any advice would be amazing all the reading in the world dosent compare to people who have experience in the matter thanks for listening

Hi there both Anonymous’s!

It’s hard isn’t it… My Dad has had MS most of my life, i’m 32 now… He lives on his own and has been able to look after himself ok, but he struggles to walk and i have to help him out a fair bit. I must admit i find it stressful at times, and i’m worried about what care he may need in the future…

If ya want to chat feel free!

David.

Hi, just joined forum and my mum was diagnosed with primary progressive ms about 18months ago. She moved closer to my family(partner and 3 children) just over a year ago but now we are thinking about having her move in with us. She barely shuffles around her flat and I worry about her falling…she does ccasionally and can’t always get up. She as just got a mobility scooter so at least she can go out, but tarely does. My 9 year oldthink ant remember Grandma ever walking properly.Don’t feel like I have any support from GP and it’s heartbreaking seeing her. I find it hard to juggle life, children and job as teacher…I feel like I’m grieving and cry every time after I have seen her. Theres no bright future either that involves my mum…is there? When I’m home and think about her I feel so angry or just sob like I am now! Life s so cruel.

Hi, I’m 32 and have had MS for 3 years and finding it really difficult as I can hardly walk. I have had the choice to go on the new Gilenya tablet as the medication I’m on is not working for me. Is anyone else on this tablet?

I am a mother of 40 yr old son who has had 2 relapses since January. He has to start tsabari (think that how it spelt) in 3 weeks. He hasn’t been able to walk since Xmas and in wheelchair at all times. I am finding it difficult to cope with moods etc. he just doesn’t want to go out too much bother. I understand all this and just want to be ale to help. He stays on his own and has carers I twice a day since January. Has anyone out there had someone on this drug and has it been any good?

Hi I care for my husband who has secondary progressive MS and was diagnosed with RRMS in 1995. We have been self funding for his care but now our savings have run out. I was made redundant in 2011. It is now impossible to work as his needs are constant but he will not go into residential care.I am wondering what will happen now? What will we live on? I am 56 and he is 66 so he receives the state pension plus a small private pension. Would appreciate hearing from anyone who has been here already. Laramae