Forum

An introduction

Hello. New member here and I thought I would introduce myself. Liz has shared shared my life for 40 years, is in her early 60s and has PPMS. After years of this disease and, pretty much, dealing with it in private (friends know of her condition but she won’t discuss it except with medical practioners–) I thought I would dip my toe into the online world on here.

It’s a demon, isn’t it? She was diagnosed in 2006 and had to give up self employed work in 2009. That was hard as it was something she loved but it had become impossible to continue. I am in the same line of work but Covid has caused real difficulties but some stuff is done at home. Until that hit she had been doing ok. She had gone, in time, from one cane, to two canes, to a walking frame indoors and me propelling her in a wheelchair outdoors, but was still doing ok. She has hated the way MS has contributed a great deal to the loss of her full independent living, as we live in a flat on the top floor of our building. Stairs are a **** but, until recently, she has managed the 6 steps inside the flat, up and down to the bathroom and, with my help, the stairs outside the flat.

Now, for whatever reason, her confidence and ability has gone on the inner steps completely. In a fortnight. Just gone, and getting worse. I could go into detail but this is just meant to a brief introduction about us and being too depressing a post would just put you off! Nevertheless I am now scared to leave her alone as she has fallen a couple of times (not down the stairs, thankfully). This morning she got to the top of the small stairway and froze. She couldn’t move and I had to virtually carry her down and can’t get back up them without my help! Now she goes down on her bum but then can’t stand up and I have to help get her onto her feet.

We were reconciled to the decline that PPMS had in store for her but the “fall off the edge of a cliff” of the last two weeks, where her ability has dramatically lessened, is a new one and hard to take. We hadn’t been aware that could happen!

Has anyone else suffered that dramatic drop off of ability? Can I ask how you coped? It doesn’t help that she hyperextends one knee and now, damn it, the other knee, reasonably normal, hurts as well especially when walking

That’s her in a thumbnail sketch. I am usually more cheery than this but shrugs, it’s just one of those days so I have finally decided to go online with it all, hopefully to see if anyone else has had a similar experience and how they coped. Liz refuses to contact the local authority to see if there is help for her and I know that, at some stage, my work will talk me out again; in fact I am dues to travel in just over a week and will be away overnight. I am at a loss as to what to do. I can’t get out of it but how can I leave her?

Anyway, partly relieved to get some of it off my chest here as Liz just refuses to address her current state.

Hi and welcome to the forum,

I was diagnosed with PPMS in 2011 and had to give up work then as well. We moved in to a bungalow 5 years ago as I was having difficulty getting around our house. Now I usually use my wheelchair inside but if I’m feeling up to it I can walk from room to room with a wheeled walker.

I really would urge Liz to get in touch with the local authority as they can provide all sorts of help. I’ve had grab rails, shower chair, powered wheelchair and ceiling hoists fitted with no cost to myself and without any means testing. Their help allows me to feel safe within my home and gives reassurance to my husband if he is out. Do you think Liz would accept help if she knew how much it would help you?

As for Liz’s recent decline, is it possible she has a urine infection? UTI’s can cause deterioration in symptoms and it’s always worth ruling that out.

I’m sure others will be along soon to offer their advice.

Sarah

Liz so needs to get in touch with local authorities and also be referred to an occupational therapist. If a stern talking to is necessary then so be it. The help and equipment that can be offered is wonderful. They are trained, experienced professionals.

My OT has been amazing and basically given me some independence and security back. This in turn gave me back my humour and lightness and took away my fear, terror, of what was in store for me… and my husband.

Diagnosed in 2015, quite literally in a weekend. Within twelve months I was using a crutch then a Rollator. I found it embarrassing and would avoid using it really. However, face planting the floor and being unable to get up was more so. The risk of serious injury changed my feelings about using it. Two years later I needed a wheelchair for outdoors. Now, almost six years later I am unable to walk at all. I can weight bear. My husband is my carer and I simply cannot manage without his help. I also have help five mornings for showering and dressing. It’s amazing what you get used to and get over.

As for “falling off a cliff”, exactly that happened to me last month. I was like a rag doll overnight almost. A hoist was delivered and I envisioned eventually going to residential care, I was so bad! It turned out to be a bad reaction to a prescribed drug to ease the spasms I was having. Thankfully I worked this out for myself and within 48 hours I was back to baseline and no lasting effects. Check out a possible UTI and anything different that might have brought about the sudden changes. Do keep in touch.

Welcome. We are a friendly bunch.

Anne

Hi Hefferlump,
It sounds like you are supporting Liz lovingly during what sounds like a horrible time. This condition is a git that seems to spread the impact and consequences. I am sorry to hear of the recent ratcheting up of issues. If Liz or you are not comfortable following the advice to call in some help, I would suggest that you look into one of those personal alarm on wrist buttons. I have one so that my wife can go out and we are both confident that if I have a big problem (fall etc) I have an option to get some help. If this is not on then perhaps a mobile phone with useful numbers preprogrammed so that you can get out a bit. In my opinion it is important that you look after yourself too so that you can continue to support Liz.
Wishing you both all the best
Mick

Hello Hefferlump and welcome.
You are a wonderul caring person with Liz’s care at the foremost of your mind.
I have rrms since 2009 and have noticed a decline of late however 3 weeks ago I hit a wall.( not literally) but I really did not know what was happening.
I did not have an infection but gp said I definetly had a virus(lymph nodes up)
I am getting back to myself a bit now but it was such a quick drastic event, maybe Liz may have a wee virus.
Sorry for the rabble and I hope things settle for you both.
Mary x