Forum

Living alone??

Primary progressive MS
#1

how many of you manage to live alone with no partner? Council won’t adapt this house which is my mums, and she refuses to move, my mobility is really bad with no signs of improvement yet.

I am hoping I can be mobile once stiffness buggers off, but I am exercising best I can and no help from baclofen or Pregabalin I am really struggling to manage stairs and my mum won’t move until my dad dies, he is almost 75 they are married still but not been a couple for like 20 years.

There will be and my daughter only who is 10 who’s moving my mum does a lot for me but doesn’t understand Ms at all, I would like to be mobile again or any tips that can help ease these tight legs as that prevents my legs from working, I believe once I’m mobile the bladder and bowels will improve.

When I was mobile without balance issues I still had stiffness but it got worse over a year, probably my gp fault for not doing anything I just want to be mobile again I shouldn’t be this bad I was 33 when it first started and to me that is young, just need to improve and I want to been on baclofen for 2/3 months and nothing helps, I am trying not to let it get me down but even physio exercises I struggle to do :frowning:

Please help :frowning:

Thanks x

#2

Be nice to yourself, MS is a tough condition to deal with at times.

I have phases when I’m tired, usually when I’ve been doing too much or worrying and stressing about things, and what I find helps is to try to be conscious of making sure that I sleep and eat well and to exercise gently without pushing myself into fatigue. I don’t force myself to do exercises if I feel really bad. I just take it as easy as I can. Then things begin to pick up again.

If you move to live alone, perhaps your mother could come to visit sometimes?

Best wishes to you, I hope things get easier for you.

#3

Thanks, I was willing to move with her but she refuses to move, and I need to as stairs are a real struggle and many times nearly fallen down as its over crowded at the moment, but I can’t keep sharing a room with my daughter when I’m like this I am only 35 and my 74 yr old dad walks better.

I just want to be able to do more this disease has stopped me doing things I wish I could do because of how poor my mobility is and both meds I’m on aren’t helping and after being told I could have ldn I can’t because of the expense my gp is writing to my neurologist because nothing is helping.

I know most of you can walk with one stick but I’ve not been able to leave house in a year because of how bad I am and no-one understands my mum assumes my walking will get better but I’m not convinced it will, I try to not think like I’ll be like this forever but there is no improvement at all :frowning:

I have to move into a place that’s already adapted so need to make that move :frowning: just sad I won’t get better at moment :frowning:

Sorry :frowning:

#4

Alysea I’m a single parent living with my daughter and the council have me a grant to make my home, which I own, better for me. My house doesn’t get the same regular clean as it used to but I try to do a bit every day, whether it’s a bit of dusting or polishing in a room or two, laundry etc. I’m not quite as anal about housework as I was and I employ a young woman to come in for an hour a week to do a couple of the jobs I really can’t manage eg hoovering the stairs and stripping and remaking my bed.

I find it possible to manage on my own. There are many things I do now to make life easier. I invested in a dishwasher as I found it really hard to wash up at night as that’s the worst part of my day. I buy frozen veg, chopped onions and sliced mushrooms, a great way of reducing effort when cooking and a slow cooker so I can prepare meals early, throw them in and we’ve a cooked meal at the end of the day and often cook enough for two or three nights and freeze meals for days I feel rough.

Fortunately I have lovely friends and family who I can call if I need help but generally I manage as I feel that what I can’t manage today will wait until I can. I hope this helps reduce you a bit. I’m older than you at 45 but have lived on my own most of my adult life. My daughter is 17 and helps a bit but is at college and out of the house for 12 hours a day so I’m on my own for most of the time.

Cath xx

#5

I do have family who can come round my mum is like if you can’t do washing/ironing how you going to manage on your own, and I need an adapted council house and the council are going to help, just hoped the tightness would have gone by now.

What does people do to ease it or make it go away, I had hoped baclofen would help on 30mg Dailey and 300mg of Pregabalin I also have a slow cooker but my balance is so bad and even worse cause I have vertigo which hasn’t gone yet, my mum thinks I’ll walk like I used to but I know I won’t.

Just wish things would improve a little so I can help round house and take daughter to school maybe I need better meds, no OT or Ms nurse yet and I was diagnosed in September things are taking so long :frowning:

Thank you Cath and everyone else x

#6

Alysea I don’t mean to be negative but have you considered how you will manage if you start to live alone, you say you would like to help round the house and take your daughter to school which at present you can’t do, if you live alone these will become your responsibility. You will need to get in place help for all of these things and the dozens of other things that need doing when you live alone. You will need to cook for yourself and your daughter, shopping can of course be ordered online but most deliveries are to your door only so someone needs to bring them to the kitchen and put them away. I assume your Mum does most of these things now it would be unfair to expect her to do all of this in two homes.

Have you asked for a stair lift so you can continue to live with your parents, if a bath is a problem there are various things you can get such as a bath chair that lowers you into the bath and rises when you get out. If I was you I would think very carefully about the future. I understand your need for independence especially if living with your parents is relatively new for you and you daughter but I do urge you to consider all the implications.

I suggest you speak to your MS Nurse or your GP regarding your medication if the doses you are on now are not helping perhaps this needs altering or a different medication could be tried.

Sorry I haven’t been more encouraging in your need to live independently I just don’t want you to find yourself in a position that you find difficult to manage.

Best wishes

Jan x

#7

This house is overcrowded my daughter sleeps in my bed so they won’t give a stair lift in this house cause it won’t fix my problem this is on,y 3 bed and we need 4 and I am not willing to wait until my dad dies that could be years, him and my mum aren’t a couple now, he sleeps downstairs and she’s upstairs.

The council has refused to make adaptions and said rehousing is the only way to fix my problem so it’s me my bro my mum and my daughter I am struggling the stairs I can’t keep waiting until my dad dies he’s not clean and works on cars so smells of oil he shouldn’t work, but he gets no other income his pension my mum spends.

I don’t want to sound mean but what other option do I have except moving stairs are a big problem due to stiffness balance and vertigo I have to do something before I really injure myself if council would do it I would stay, they have already refused.

Not much of a option here.

#8

Alysea your situation definitely isn’t ideal. I fully understand your need to move now, but as Jan said, you really need to speak to a social worker, your gp and an OT. Earlier I told you that I manage reasonably well but my mobility sounds to be better than yours. I have aids like a perching stool and bath chair and other bits and pieces to help me but I’m mobile with a stick and furniture to lean on. I have days where getting around is difficult but my daughter is old enough to help by preparing a meal etc when needed. Your daughter sounds to be much younger.

It isn’t always easy. Do you think you’re capable of looking after yourself and daughter without the constant help from family members? How independent are you? You don’t need to tell us, it was just something for you to think about. Maybe start listing what you can’t manage for when you speak to the housing officer or social worker as you may need a care package. If you do, you need to know that this will be available for you and that you’ll definitely receive help consistently.

I know I possibly made it sound reasonably easy earlier on but your last post and Jan’s made me realise that your situation appears different to mine. Have you ever lived on your own before? I really feel for you, you’re obviously very unhappy. You need to speak to someone who knows what help you could get in your situation and area. I hope you get the answers you need. You can self refer to the OT in my area by ringing adult services, is that the case where you live? Maybe that’s somewhere to start?

Good luck. Cath x

#9

I can only echo all that Cath has said. I have an aquantance with a school age child who pays someone to take her son to school every day, I think (not certain) she pays for this from direct payments. If you don’t already receive this then I urge you to set the ball rolling sooner rather than later, at least you will know if you qualify or not. Does your mum receive care allowance for you if so then I assume she will continue to help you if not then perhaps you could have a different carer. So many questions and so many different scenarios are going round in my headl I urge you to get as much as possible signed sealed and delivered befor you take the huge step to live independently.

Best of luck

Jan x

#10

Not sure what else I can do if my mum is refusing to move, I lived on my own when I was 19 and lived for 3 years with ex partner, I don’t understand why my mobility is so bad, PPMS isn’t suppose to be this bad from what I have read, I live in preston Lancashire I don’t have a Ms nurse just my neurologist and my gp who is amazing.

I want to make my mobility better your all able to walk with one stick but my legs keep trying to give way so I have to use 2 I have a pair of crutches upstairs and downstairs I have had vertigo for over 2 weeks which has made things worse, my balance is so bad and I want to improve mobility but don’t know how, it’s a crap situation cause I had a terrible gp who said nothing was wrong with me.

For a year I was going to him and I only changed gp January 2014 it took 9 months to be diagnosed, I am not sure what else I can do if she’s refusing to move I am struggling with the stairs and council won’t adapt. They said only option is to move with my daughter or as a family and she won’t move until my dad dies he’s 74 and could last years.

Thanks all x

#11

Thanks jan, she gets carers for my brother so can’t for me, my sister gets it for me I did it to help her out when the dwp stopped her severe disablement allowance she does things for me takes me to gp etc.

#12

It is my understanding that everyone with MS is allocated an MS Nurse. Ring your Neuro’s secretary and ask her if you have one or if you can be allocated one also ask if you can self refer to a physio. My physio gave me a wheelchair and a rollator he also referred me to OT who assessed my needs at home and gave me a chair so I could access the bath safely. You are going to need daily help from your sister if you live alone and if she isn’t forthcoming or able to assist you more then you need to change your carer. Sorry if that sounds harsh but you need to think about your needs and your daughters needs, she will need supporting as well.

Best of luck

Jan x

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#13

Hi Alyssa

Obviously things are really difficult for you, but as I see it, you need to ring social services adult care team for an of, I am sure they will be able to help.

Also ring neuros secretary to get the number for ms nurse, they will visit you at home and get the ball rolling.

Wishing you all the best, take care.

Pam x

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#14

I phoned 2 weeks ago been waiting since September for a Ms nurse and OT think my mum is agreeing to move now my physio has given me exercises but they don’t help, she comes back soon 2 weeks I think, there must be something I can do to improve balance and stiffness.

Vertigo has made my balance worse and it doesn’t want to bugger off I feel dizzy all time with it double vision tiredness :frowning:

Thanks x

#15

Hi

If your gp has not given you any meds for vertigo, ask him cos their are things that he can give you to help this.

Just an improvement in one of your symptoms will make you feel more positive, and also ask him if quinine would help the stiffness.

Keep your chin up if you can.

Pam x

#16

Yeah I took something for vertigo it didn’t help he said that I can only have it for a week, quinine I’ve had before also no help I thought exercising would make it bugger off but it was there before I had walking problems so 2 years I didn’t expect it to last this long.

#17

Alysea as Jan said everyone with ms is supposed to be allocated a specialist nurse. This is according to the nhs guidelines. The MS Specialist Nurse Association regulates this and can be contacted at tel: 01531 640481, e mail: admin@ukmssna.org.uk They should be able to help you.

Cath x

#18

Hi Alysea, I don’t want to be a downer but just want to sort out a bit of confusion.

Although PPMS can be slow progressing and sometimes RRMS is worse, generally PPMS is pretty challenging. Mobility problems tend to be very much part of PPMS and most of us on here are using wheelchairs, mobility scooters, crutches or walking sticks.

I’m finding it hard to write this post as I certainly don’t want to depress you, but I think it’s important to fully understand PPMS and how it affects us and how it might affect us in the future.

For many people PPMS can be slow progressing. I consider mine slow progressing. I was dx 7 years ago (after years of very mild symptoms) and I now cannot walk outside at all. I use furniture to lean on to get around my flat and mobility scooter or wheelchair outside.

Some people do have PPMS that is slower progressing than that and can continue walking ok for years. Other people are using wheelchair or scooter very quickly, even before dx.

Do not see this as a sign that you should give up on your quest to improve your mobility or vertigo (that’s a bugger that I struggle with as well), but I think it is important to accept that we have a chronic condition that is progressive.

For the vertigo, buy some root ginger (supermarkets sell it). Peel a bit about the size of your thumb. Cut it into small pieces and put it in cup with tea bag. Pour on boiling water. Make the tea as you normally would but leave the ginger in the cup. It tastes nice and helps with vertigo.

Sorry if that was tough for you to read but ultimately it does help to know what you’re dealing with.

Pat xx

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#19

Thanks Cath, will contact them waiting 7 months for one is terrible, but will email them tomorrow. Daughter isn’t well so sister taking her doctors tomorrow :slight_smile:

#20

I am 58 in October and was diagnosed with multiple sclerosis 7 months and am still working out how to deal with me on my own. It’s difficult working out the symptoms new and old.