Been a while since I posted had worst time ever but hey I’m still here! Hubby had suprapubic done end November not been to bad apart from flip valve keeps coming out and hubby got no sensation so doesn’t feel the bed wet. He seems be going down hill it’s everything this stupid ms doing to him won’t give him a break! He feels he be better of dead than have to go threw this and me having to look after him. It’s so heartbreaking seeing him get weaker each day and he broke down today he scared and doesn’t want go anywhere yet. I sat and hooded him close to me and let the tears flow. He has no energy at all it an effort everything he does. Eating getting difficult and he even choking on his own saliva so has to sleep sitting up. I asked oc for first aid training and was told June before there a course so what do I do in mean time? Why can’t there be any more help for ppms? AmantAdine does nothing for him. Baclofen was helping with tremors in legs but he has it in arms and hands now and this has been making it more difficult for him to drive. So car prob have to go soon as I don’t drive ! Has anybody with ppms found symptoms coming on fast? What can I do to help hubby? I’m so worried for him I just don’t know what’s going to happen
Hello
It does sound like the pair of you are having a difficult time.
When you say the flip valve comes out in bed, do you mean overnight? And do you mean the flip-flo connector? Most people who use a flip-flo valve (I assume that’s what you mean), plug into a night bag for overnight. That way, there’s no danger of wetting the bed. Has your husband tried that? Or am I completely misunderstanding you?
He would possibly get a better nights sleep with a night bag too.
I assume you’ve changed your diets to make eating a bit easier? Have you seen https://www.mstrust.org.uk/a-z/swallowing ? Many people see a speech and language therapist to assess their swallowing problems. Perhaps if he’s not been referred thus far, you could ask your OT for this (or GP or physio).
If your husband has tremors in his hands and arms, perhaps he shouldn’t be driving at all. Is he safe at the moment? Does he have full control? Have you/he notified the DVLA of his PPMS?
Regardless of this, Baclofen usually helps with stiffness and spasms, but less so with tremors. There may be a better drug to help? Cloneazepam can help, but it’s not something to be taken in the daytime as it also has a sedative effect (helps with nighttime tremors and sleep too).
It’s so difficult when there are lots of small(ish) problems, and they are all being dealt with by different people with differing specialities. Is your MS nurse helping to coordinate your husband’s care? Or is there a Neurological Rehabilitation Team in your area where all the different specialists can be brought together?
Also, are you getting any support? Carer fatigue and emotional pain can have a big effect on how the two of you are dealing with the everyday life issues. Do you manage to have any time to yourself? Time when someone else is with your husband? An external carer, or a good friend for example? So you can have coffee with a friend, mooch around the shops, do something for yourself? Don’t neglect your own needs. It won’t help in the long term.
I do feel for you, and all the people in a similar situation. It’s a hard hand you’ve been dealt and you are dealing with it admirably.
All the best.
Sue
Hello sue thanks for replying. I do mean a flip flo valve ! Yes of a night we put night bag on it’s if we go out I took him hospital appointment other day and it had come of so he didn’t feel wet and lucky enough had change of clothes . Plus as he in bed most time now it has came of and if put leg bag on he scared to move his legs so they go dead . The opening has been quite gungy past few days so going ring clinic just check it ok. Saw ms nurse once last year. If I need help I have to ring then they ring back two days later with advice that all. We are waiting on him to be seen by brain specialist team who was told supposed to help so wait and see. I don’t have anybody else to help me out his mum and dad waste of space and making him feel crap for having ms they seem to think he putting it on! My daughter 22 has her own problem at moment still in the pain and with catheter in since October she had twok and retaining with catheter in also. Had mri in December see if anything shows up but this gone on for a year now. She looks ill . I get out with my dog a few times a day for ten mins gives me breathing space and chew dogs ear of haha. He the only one can open up to . I’ve only just started speaking to my own mum again had fall out for two years so just taking it slow. I will keep on at getting hubby appointment ASAP thanks for your advice about that medication will ask gp x
Re ‘the opening’, do you mean the SPC hole where the catheter comes out? It could be a wound infection. I had an SPC for 6 months in 2017 and had a wound infection for most of that time. The surgery nurse was checking it and gave me cream for the infection. In fact when I saw the surgeon, she said she could fix that easily with some silver nitrite (I think). I hated the SPC so got her to take it out!!
So if the wound is gungy, then you should get someone medical to look at it. (Amongst all the other tings you do!)
Your husband and daughter are lucky to have you. And parents (among other family members) are an absolute waste of space!
Sue
Hi sue yes the opening of wound to spc. When it was like this other week took him to urology clinic and they just said clean it and put cavlon cream round it. District nurse won’t come out and own gp said go hospital? I’ve just been keeping it clean and dry and see how goes. I will ask pharmacist tomorrow for that silver nitrite tho thanks
I have a feeling you won’t be able to get silver nitrite to use yourself as it’s quite caustic and requires quite careful usage and handling. (You don’t want to make things worse!) It was the urology surgeon who said she could treat the wound easily with silver nitrite. Better to ask to see your GP practice nurse. They tend to be better at treating wounds than doctors, in my experience.
Sue