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Primary Progressive MS Advice

Good afternoon,

I am after some advice regarding my Dads condition.

He was diagnosed with Primary Progressive MS in 2008 and has been managing at home on his own fairly well up until now.

I would say over the past 2 years I have noticed significant changes in his walking, use of his right ride both legs and arms/hands etc. bladder control, mood and memory loss.

More recently he has been having a lot of falls and is always covered in bruises.

2 weeks ago he fell outside his house and banged his head on the gravel driveway, after being picked up by neighbours and a call to 111 he said he felt okay. Later on that evening when attempting to get his dinner ready he had another fall in the kitchen, this time wrapping his legs all the way up to his shoulders.

Following this fall he was in a lot of pain and unable to walk or stand.

I live 150 miles away so I got there as quickly as I could the following day to bring him home with me so I could look after him until he was feeling better. That was never going to happen, I couldn’t get him out of his chair let alone out of the house and into my car!

I called 111 explained what had happened and they sent an ambulance, following this he was in hospital for just over 2 weeks - left in a bed with little attempt to try and get him standing or walking which I don’t believe has helped him much!

The Operational Therapists he saw in the hospital arranged 3 visits a day from carers when he got home and set up a bed in his living room for him.

I visited him 2 days after he was home from the hospital and he was no better, if anything he was worse than before.

His mood is understandably very low as he has gone in a very short space of time being able to manage on his own to needing round the clock care.

He has lost the ability to urinate himself and has a permanent catheter and is also struggling with constipation followed by severe diarrhoea after being given a lot of laxatives in hospital.

Whilst I was visiting him one of the carers told me he shouldn’t be home and it would be only matter of days before he ended back in hospital which is not what he or I wanted.

We managed to persuade him to spend a couple of weeks in a residential care home, but even now I don’t know if he is going to get back to where he was before or if this is going to be his life now.

I don’t want to give him false hope if this is just a sudden progressive of the disease and he wont get back to being able to be independent following the recent falls.

Really I am just looking for some advice really, it seems every time I speak to him he is no better and he himself cannot see any light at the end of the tunnel.

Thanks,

Lauren

Hi Lauren, As you probably know PPMS doesn’t have periods of remission and that when someone’s condition deteriorates it’s likely that it will be permanent. However, if your Dad has been reasonably active until recently, then it’s possible that he can regain some independence with the appropriate physiotherapy. It is a big IF though. In my experience it’s all about rediscovering what one can and can’t do safely. Regards, Anthony

Hi Anthony,

Thanks for your reply. He is having physiotherapy on a daily basis and has managed to regain some of his ability to stand and walk, although with the use of a walker or a trolley - but its something!

Regards,

Lauren

Hi Lauren, That’s good! I have PPMS and I found that physiotherapists could get me some mobility back with the right exercises. When one understands what they can and can’t do it can help enormously. I walk much more slowly now but I haven’t fallen in a long time. I know that getting more mobile, even with a walker, is a small victory - but a small victory is better than no victory at all. I hope that this will help to improve your father’s mood as well. Regards, Anthony