Another lesson learnt

[Nichod100]

I had a slight cold on and off for a couple of weeks . 10 days ago it seemed to come to a head and came out fiercely . The next day Richard woke up with it , I wasn’t unduly worried but the next evening I lay awake and thought about how or if it would affect his MSA . I rang the Dr at 8am sharp and requested a phone call . The Dr prescribed antibiotics but said if was a virus they wouldn’t help . We stayed in for 3 days although it messed up his birthday . I had organised a surprise lunch with family and a couple of close friends which he went to the day after . For some reason he decided to start his antibiotics 2 days after I had picked them up . After one day of 3 tablets we had an awful evening . His walking was much worse and speech too , I had to help him into the loo every time . His breathing and chest weren’t great that night and he was very hot . I felt sure he was fighting an infection . I administered paracetamol , made a decision to ring work at 5.30am and say I wouldn’t be in and laid awake listening and worrying . I made another phone call to the GP and took him at lunchtime . They confirmed a chest infection and doubled afternoon and evening doses that day . They said if he deteriorates he will need to go into Hospital . I felt very worried and frightened and it made me realise how serious a cold can be . I also spend my time trying to stay upbeat and matter of fact ‘ it will be fine this bloody MSA , we’re ok , it could be worse !! I felt plunged into the future all of a sudden , a glimpse of how it will be as he deteriorates . Don’t get me wrong I’m under no illusion , I know what we are facing but for Richard to change soo quickly was a smack in the face . It made me think about when I should give up work , although it needs to be a smooth tradition with more help financially or we are in a catch 22 . Thankfully he is out of danger now the antibiotics have worked , I’m so glad I acted quickly but next time I will insist he takes them ASAP 😜 Of course I now know any infection will make his MSA much worse , will take him longer to get over , and can mean he may not return to being quite the same as before . So another element to this condition . His walking and speech are not great but it is still early days and he has another day of the antibiotics yet . It has made him use a conveen though at night which has been brilliant . We both sleep so much better . He’s not up and down every hour or so and I’m not worried he will fall . We did have a laugh with it at first though the GP prescribed size 25mm it was like getting a sausage in a skin 🤪🤣 I rang them and was then given a piece of paper to measure him . No wonder his eyes watered and he had a high pitched voice . He needed a 40mm !!!! Needless to say he is much more comfortable now . As we all repeat on this forum you have to find humour and try and stay cheerful so I hope this brings a small smile to your faces 😃

[ChocolatePot]

and deep breaths and relax (for the moment). hubby has the conveen but hates them and we use them only once in a blue moon. He feels and said he sleeps better without it. But nice to have.

[Yanno]

I love your telling of joys of MSA. I have to say it rang a chord when you say you get a glimpse of what is to come. When Jax has had a UTI, sadly all too frequent but fingers crossed not in a while, we get that glimpse of the future. It makes us enjoy the now even more and be thankful for what we do have.

Take care, Ian

[Hellebelle]

That did make me chuckle! Thank you for that. As you say, humour is the best medicine if you can find it with all the terrible things this condition throws at you.

All of what you have said rings very true! Dad would go down very badly with any virus or infection and his symptoms would be far worse. He takes ages to get over anything and he sleeps for hours.

I just hope and pray a treatment can be found some day for MSA.

Sending you both lots of love❤

[Paul_and_Sue_Wood]

Hi

Thanks for the reality posting.

My Sue gets chest infections and it has gone from normal to hospital in 8 hours when I was in London on business.

We now have an emergency set of antibiotics to be administered when she shows signs of a chest infection and I also monitor her SATS with a finger pulse and O2 monitor.

She is now on her 4th course but we've kept out of hospital so far.

Think ahead and act fast is the best advice I can give as conditions change quickly .

Keep battling on and get carers to help you.

Don't give up work use resources around you if you can.

Paul