Primary Progressive MS

My Mum has Primary Progressive MS and is restricted to bed / chair although she can use her head, eat, speak, she has a live-in carer. She has been in hospital twice over the last 3 weeks with pneumonia and then sepsis and scary times when thought was going to loose her.

She came home yesterday but is incredibly weak to be able to communicate effectively and to eat/swallow or move her head. She feels she just wants peace and quiet, no stress and is highly anxious if her live-in carer leaves the room.

I am 36 and have a 5 year old daughter. We live 300 miles away from her and looking for advice. I’m wondering if it is reality to consider she is dying? and if so I need to organise compassionate leave from work and want to sit in her room with her. How do I know how serious this is? Will she get back to how she felt before hospital visit (usig her head to push button to operate the wheelchair around the house and to operate TV), or is this how it is now and she is actually bed-bound or Dying?

Looking for people who have been in similar situations. IS there a specialist MS doctor who can call on her?


Sorry, I have no experience to share with you. I just didn’t like leaving your post with no answers.

You must be incredibly worried about your Mum, especially as you live so far away.

Does your Mum have an MS nurse who you could ask for advice from? If not, perhaps you could ring her GP surgery and ask there if they can put you in touch with an MS nurse, or indeed if there is a palliative care service who are organising the care for her.

Do you (or anyone else), have a Power of Attorney for her? If not, you might find health care professionals may be reluctant to speak to you on her behalf. Perhaps if you don’t have PoA, you could get it sorted? You should note there are two separate types of PoA, one is for health and the other for wealth.

Best of luck, I hope you get some help with this. You have my utmost sympathy.


hello thankfully i have never been in that situation but i couldn’t leave you with no replies after 3 days. the hospital where she was given her diagnosis can say if there is a specialist ms doctor in the community. it will probably be an ms nurse consultant. it’s very hard for you, living so far away and having a young child. make sure you look after yourself. ask your gp if there is a district nurse who could help. it must be very upsetting for you and your mum in different ways. wishing you both well carole x

Hi there , just seen your post and had to respond .

I lost my mum at Christmas time after she suffered with primary progressive MS for twenty years and was the same towards the end , restricted to chair / bed , could use one arm and could eat and chat. What you have described sounds very similar to the last 12 months of my mum’s life and it is so difficult to know . Mum was In and out of hospital pretty much every month for weeks at a time with a UTI which often turned into sepsis or low salt levels . Unbelievably I can’t believe how many times she fought it . Every time she came out of hospital she never got back to where she was before and declined in some way . The last time she went in the specialist suggested that we might have to get our heads around the fact that she was in the last year of her life , then 2 months later she passed. . Eventually she was just sleeping most of the day and didn’t eat and just faded from there really . So my advice would be to get your head round the fact that the hospital visits might continue but get some advice from an MS nurse who should be able to give you some advice .it must be so difficult being so far away . I hope I haven’t upset you by being so candid but I wish I had known , but in hindsight I can’t understand why I didn’t ! there should be a ms nurse you can call upon close to where your mum is based so I would go from there . This is just my experience though but couldn’t not share . Sending hugs and let me know if you have anymore questions . Susie


Hi, sorry I’m a week behind everyone else !! I feel for you. I’m in a similar situation, my mum is chair/bed bound. Quite often has uti’s but so far managed to avoid hospital. I get so upset at how her life has become and keep wondering how much longer this can go on. Going by the posts you and others have on here I’ve a while to go yet. It would certainly be worth you speaking to your mum’s nurse or her gp. My mum also gets very upset when she’s left on her own. I’d put that mostly down to her blindness.


I’m so sorry to hear of your situation.

I unfortunately lost my dad 3 months ago.

He had PPMS and COPD. He also suffered with UTIs and chest infections.

he spent his last 6 months predominantly in bed and had a number of hospital visits. He was essentially on end of life care with palliative nurses administering morphine for his pain. His doctor advised us that there was a limited amount of time left for him as his body was tired of all the fighting.

Although the hospital staff were beyond fantastic they struggled to care for him in terms of his MS needs.

In their defence he was in there to be treated for UTI / Sepsis.

He went in on a Sunday (blue lights and all) and he was really agitated and clearly wanted to go home. We made a family decision to take him home on the Thursday and give him his wish to pass away at home with his family.

He died on the Sunday.

I never knew how I would deal with the inevitable grief of losing my dad as we were a really close family but in truth, seeing his pain etched on his face subside at the end made it a lasting positive memory.

sorry if that was all a bit morbid.

all the best

Thank you so much for taking the time to write your message. warm thoughts to you during this winter season x Sorry am feeling rather speechless at mo to write any more x

Hi I’m new on here my husband has PPMS,and although I don’t have any advice for you I it must be so hard for you living so far away and with a young child too. My husband has started sleeping up to 20 hours a day sometimes when he is awake he can walk around although very slowly he can still speak and he does eat and drink by himself but he doesn’t eat enough I thought this was as bad as it got but looks like I’ve much to learn. Sending hugs.

Yes I am also new on this site, my wife has PPMS and currently has a broken shoulder through falling a month ago which of course makes things that more complicated. However, we have a routine that works, (grateful to the wheelchair) Prior to the fall my wife could walk around the room a little by grabbing things, now that is impossible! anyway I just wanted to say hello and make my first message and I hope fairywings you are coping ok today with your mothers situation ?