How quickly does PPMS progress?

Hi All,

My partner was diagnosed with PPMS in January. I am still trying to get my head around it all. When I have googled how quickly it progresses, I have found out that it is generally a steady progression. I have also found something which states that it can take twenty years to progress to 8 on the EDS scale. Twenty years, for someone diagnosed in their late fifties feels hopeful although obviously it would be great to not have the diagnosis at all. However, both these findings feel contradictory.

It would really help to hear of people’s experiences of progression, if at all possible.Any other information that you have found out would be greatly appreciated; the MS nurse has been beyond useless! Thanks in advance.

Hi Anon

No two people have the same combination of symptoms or progressive rates. I’ve nursed people in wheelchairs in their 20s, and I’ve met a woman in her 70s who had just started using a stick because her vision kept blurring which made her trip a few times. What’s also important to know that some symptoms come and go or get worse and ease up again. The word progressive doesn’t mean you’re on a steep slope down.

An old friend and I were talking about this a few weeks ago and we both reckon I’ve probably had it since my early 20s as I was really clumsy, I got really ill from some minor infections and was not very physically strong. I’m now 50, use a stick and live on my own with a helper who comes in once a week to help with jobs I’ve not been able to do or can’t manage. I’ve also got other health issues which makes this remarkable.

The important thing is to just focus on your current issues and find ways to cope with them. The people on here can be surprising with their ingenious ways of overcoming problems and no symptom hasn’t been discussed, you can ask anything anonymously if you’re self conscious.

Take care

Cath

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Greetings…

I was diagnosed 6 years ago with PPMS. 10 years after my first symptoms. Even then they scratch their heads & keep diagnosing different problems.

The best advice I would say, is go with a diet & exercise routine. Avoid the medication cocktail. Them things have side effects & cause damage, for the wrong symptoms. There is NO valid medication for PPMS. Stress doesn’t help & heat is a nightmare.

Don’t worry & get on with life as normal as possible. You’ll learn to deal with problems as they arrive.

Best regards Terry

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PPMS as above Cath and Terry covered it and I’ll only be saying the same so tough I ain’t going to wear myself out doing it. Good luck I have had it 28 years

Don

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As there is no definitive answer, I would say take it one day at a time.

Knowing what I know now. I`ve had it all my life and it became apparent at 55 although my symptoms are stable and some are in reverse.

To save the annoyance of people staring at me I use a Rollator when out walking to the shops. The ironic thing is in some cases I walk faster than able bodied people.

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My husband was dx with ppms in 2000 after having weakness in his right leg for a few years. He was 45. I think his progression was fairly typical: started using a cane in 2003, then two canes by 2006. By 2008 he was using a scooter for outside trips and had to give up driving. By 2010 he could no longer walk and graduated to a wc. We also installed a stairlift in our two storey home. He was able to get on and off the wc with assistance for a couple of years, but beginning in y 2013 could no longer do so and we purchased Hoyer Lift. By this time his speech and upper body were affected, including his hands, and he could no longer feed himself. We sold our home in 2015 and moved into a condo with a live-in aide as I could no longer take care of him alone. He declined rapidly after that and was having great difficulty speaking and swallowing. He was more or less bed bound. There were also cognitive challenges. In early 2018 he was taken to the hospital for vomiting and we were told he had aspirated bowel contents. Sepsis and respiratory failure took him four days later.

This disease destroyed my beautiful, athletic husband and our dreams of a happy future in retirement. My prayer go out to those of you suffering, including family members and spouses.

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Hi Mugs68

I’m so sorry to read your story. You’ve had a very bad experience with ms. I lost my dad who I was very close to three years ago. He had motor Neurone disease and his deterioration was much like your husband’s. I know there’s nothing anyone can say that will take that pain, or the memories of the struggles away, but I take my hat off to people like you and my mum that stayed with them and gave them the physical and emotional support, and love that made their lives that bit brighter. As a required nurse I’ve seen many people who’ve become ill or older and abandoned. Your husband was lucky to have you. I wish everyone had someone like you to support them.

Take care

Cath x

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Thank you all so much for taking the time to contribute and answer my questions. I really appreciate it, particularly the advice to take one day at a time. I am sorry that I am responding so late but I haven’t been able to login; I really struggle with passwords and IT. Thanks so much.

Hi Mugs68,

Thank you so much for taking the time to share your heart-breaking experience with me. I am so sorry for all that you and your husband went through.I think that you are a truly incredible person to have provided the love, support and presence for your husband.

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It depends on the person. Each person is different. Please remember all of us will pass away one day. My husband was diagnosed in 2007 with ppms and recently passed away 2019. He did not suffer, he looked quite peaceful, he died at home. What is helping me he would always say trust The Lotus Sutra and I would be protected. The Lotus Sutra English translation by Burton Watson. Nam MyoHo Renge Kyo.

Hi again,

Thanks again for all of your contributions and replies. I am very touched. If I am honest, one of my biggest fears is my partner needing care at some point in the future, that I am physically unable to provide. I have been a support worker and know what it is like to not be strong enough to lift someone etc.

However, maybe I am worrying unnecessarily? There used to be a system called Direct Payments, where the person with the disability could employ their carers directly and be in control. Does this exist any more?

Is there an affordable way for ordinary people to bypass expensive agencies and buy in their own care, that is good quality and doesn’t break the bank? Many thanks, in advance, for any ideas.

Thanks Bon, for your wise words. I am sorry to hear about your loss. I will definitely have a look for The Lotus Sutra. Thank you.

you don’t get guarantee with anything

that’s life no guarantees

Thanks again everyone for your comments, ideas and feedback. I really appreciate it. Happy 2020, everyone.

Hi I suppose the sarky answer is how long is a piece of string…but I hate sarcasm so I`ll answer properly now! In my onw case for example…I was wheelchair bound within a year part time and then full time around 18 years ago…a 22 year PPMSer. But today I saw an old mate with PPMS, whom I haven’t seen for 7 years and he is still walking…so see the various possibilities? Go with the flo yeh? xxxxx

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When I was diagnosed in 1996 aged 56 I was told that previous progression was an indicator of future progression. I reckon that I had problems from my teens and so it appeared that my progression pattern was one of very slow deterioration. That continued to appear to be the case until a year or so ago. However, it now seems to be accelerating quite rapidly, although I can still stagger along using a pair of walking poles, but walking is now certainly becoming very difficult. I have always been a bit of a fitness fanatic which may have helped with my slow deterioration, or possibly is no longer helping - I can’t be sure which. However, I have got to 80 without having to resort to a wheelchair.

As others have said it seems that everybody’s experiences are different and I am posting this response in the hope that helps you get some idea of what may happen.

Jeff

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I found your reply very helpful. I’m 61 and was diagnosed with PPMS a year ago. I feel my progression is slow (hopefully).

Thank you Gloves it is good to know that my posting has helped you and I do hope that you have a similar experience to me, or hopefully an even better one. I am beginning to feel that I have been overdoing my workouts which hasn’t helped my abilities recently. However, I enjoy working out and it also is good for my self esteem. At the end of the day it is a personal choice as to how much you push yourself, but I am certain that fitness is very important in keeping yourself mobile.

Best of luck in coping with your MS.

Jeff

This is my very first time on here and simply reading every single of your comments made me feel very at home, cry with relief I suppose that I am able to hear others having experiences, symptoms that I have. Right now I don’t feel alone and actually thank you. I always considered myself to be a fit & healthy enough person, right to Christmas 2017 (of all the time to be told but never a good time hey!) that I was suffering with PPMS. When my husband asked the MS nurse the dreaded questions… ‘how long…?’ her answer was pretty much what every one says… it differs for everyone, even with PPMS. That’s what I had difficulties getting my head around the idea for some months afterwards. We adapted easy access from bath to shower, walker/sticks & electric scooter are my new found friends for my legs & moving around. Best of luck. Flo

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