Progress

I’m not sure if this category is the right place for this, or if it should be in Life after stroke, but if that’s the case, you will have to correct me, that’s fine too :slight_smile:

Robin is home since a week back now, and I’ve seen the following changes since then.

His speech is better. It depends a bit on the subject, and also if he’s tired or rested, but in general it’s more fluent than it was a week ago.
He’s got easier with emotional regulation. The first two days he cried a lot. Was devastated about what had happened, the things he had said. He couldn’t remember who he said what to, and he kept apologising for everything. That has changed and he’s more stable today.
He does understand that I haven’t left him, although he still needs to do “reality-checks” on occasion. He told me the other day that he still have more than one thought about the same subject to choose among, and only one of them is what is real. So, because of that he is checking in with me, hugs me just to make sure I’m still here.

But he’s doing a lot better just by being home as it seems. The Stroke nurse, the physio therapist and also the speech therapist was here this morning. Thankfully his blood pressure is going down. He was diagnosed with polycythaemia, so somehow he’s got too many red blood cells, which makes his blood like syrup and the circulation gets very sluggish.
He had Aspirin for that up until a couple of days ago. And he will see the haematology team as an outpatient in a few weeks time. So, we’ll see how that goes.

The blood clot in his forehead seems to be there to stay, but the pain should subside with time. His eyesight is still rubbish. No peripheral sight on his right eye, and very blurry on the left eye. He’s also got problems identifying objects, so that hasn’t changed much.

But, unless he’s tired, he understands more of what is said and he’s easier to talk to now than he was a week ago.

Memory comes and goes, and overall this is all depending on how rested he is.

It’s the same with his ability to move and his balance, but he’s found a good pattern here, so he can walk from the bedroom to the bathroom, or to the living room and kitchen and so on. Although, I think that in an environment that he doesn’t know, it would be a bit different for him.

He’s using his laptop again, but so far he’s got problem reading, so he mainly watch videos and that sort of thing. Reading and writing seems to require a lot of focus, and that makes him tired very quickly.
He had tried to write something the other day, just words, and the only thing in that list that made any sense was his surname. He couldn’t even tell me what the other words meant.

But thankfully, he’s in a good mood in spite of the headaches and other difficulties, so he’s optimistic. And that means that half the battle is won :smiley: He can make himself coffee, make sandwiches and he’s even taken out the trash and helped me clean up a bit. Loaded the dishwasher and so on. Although, on occasion I find things in the fridge that doesn’t belong there, but it could be a lot worse. He’s not clear enough to take responsibility over his own medication yet, so I’m handling that bit for him.

But overall, there’s been a lot of improvements since he came home.
Thank you for all your encouragement and for the warm welcome :heart:

Christa

5 Likes

If possible I would schedule appointments on separate days as Robin may find them tiring.

3 Likes

This is very good progress. Rest is essential for the first six months while the brain is in spontaneous repair, after that, continuous rehabilitation ought to kick in to address his condition, but it sounds all optimistic.

2 Likes

He is making great progress by the sounds of it. He is still extremely early in his recovery journey & thjngs will improve even more over time. It is good to hear that he is more positive now he’s home. There will be good & bad days as long as you expect them you will get through them ok.

I found reading exhausting for a long time after my stroke. If he perseveres it’ll get easier for him.

The fact that he can help you with someone things is fantastic.

Don’t forget rest is equally important for both of you.

3 Likes

Hi Christa,
GOOD NEWS INDEED ! But these things need time and should not be rushed; my own experience when I got home was that reading was very tiring because my eyesight was so poor and my speech slipped once tiredness set in. I found that the answer was a nap every afternoon for an hour or so.Any news on a wetroom yet?
You have clearly been through hell, and I do hope things settle down for you both. Keep your chin up Robin ! Each new day is a bonus.
Best regards,
Bob Isle

3 Likes

@Janetb I had a talk to the physio therapist about that when she was here yesterday, and she made a note about it. So not all of them will show up at the same time.

Christa

1 Like

@Rups But I really need to tie him down so he doesn’t do too much. Last night he was really finished, but couldn’t sleep. And he also have developed a neuropathic pain in his right side, so Paracetamol is useless. He’s got an appointment on Monday at the GP to get something else for that pain.

Other than that, he alters between bed and the sofa in the living room during the day.

Christa

2 Likes

@Mrs5K I try to pace him because he feels bad about me doing everything, but I’ve told him that he has to allow himself to be ill when he is. And yes, the fatigue is really bad on occasion, so he does rest as well.

But it goes up and down, so the main thing is that it goes in the right direction long-term :smiley:

Christa

2 Likes

Hi Bob :smiley:

Yes, it’s a long-term project, I understand that. His brain is both healing and rewiring itself right now and that will take some time. So I try to encourage him to rest as much as possible.

And we have been denied the wet room for now. They will find a different solution in the meantime, because apparently our landlord can’t do these things with a short notice. We’ll see how many more years they need to get that far.
What we’ll get instead, I’m not sure of, but whatever it is, I hope they remove the bathtub. Neither of us are using that anymore..

Christa

1 Like

I understand how he feels completely. In time he will learn to pace & you’re doing all the right things. There’s a fine balance to be had between resting & doing thingsand over time he will be able to more & more. Sounds like you make a great team.

2 Likes

That’s all I pretty much did for about three months. I’d watch history and wildlife documentaries as well as programmes about the brain. I also listened to podcasts like the StrokeCast and other informative audio.

Before getting back into bed or before getting out of bed, I did gentle exercises for my arms, neck and legs, combined with gaze stabilisation exercises for my eyes. The only meals I could tolerate were soup and salads. Massive bowls of salad with things like tuna, eggs and mackerel. No other meat. I think it is all part of the course.

I wonder what meds they will give him for the neuropathic pain? I wonder if it will be Pregabalin or Gabapentin?

1 Like

Hi Christa and Robin,
I am pleased things are slowly improving for you and I am sure that will continue, if you pace yourselves.
I am disappointed to hear your wetroom application was denied. FYI , my local council gave me a GRANT of £10,000 for a wetroom. I already had an en-suite bathroom with huge corner bath and separate shower. So, they took my bath out and put down a wetroom floor and fitted the shower chair to the wall in front of the shower . My application was NOT means-tested (but I was not going to look a gift horse in the mouth !) I am not going to talk about your personal financial circumstances. I was fortunate in that I owned my home and was able to take out a new lifetime morgage on it, which freed up capital to buy wheelchairs and hoists, etc. and found Nationxxxx) B..
Soc. VERY accommodating (I PROMISE I AM NOT ADVERTISING FOR THEM). but recognise your situation is very different. M ay I suggest you speak to your local Councillor with a view to appealing for GRANT. They do know the right strings to pull. And the sooner you do it the better. Even as a lawyer I found local councils dreadful to deal with and my Councillor has been fantastic. Does Robin(or you) have any military connections or have either of you ever worked in insurance at ANY level? I have good reasons for asking those questions! So do let me know!
It should not take years to get a wetroom installed; mine was done in 10 days ! If you bath is taken out by the landlord, you MUST have at least a shower for hygiene reasons This is where your Councillor may come in ! At least it’s a starting point. But don’t take NO for an answer !
Are you on good terms with your landlord? Is it worth/practicable considering a cost sharing project with him/her?
Best of luck and let me know if you think I may be able to offer useful advice.
Bob Isle

Hi Christa,
If neither of you can use the bathtub any more, then there’s no point in having it! I believe the NHS has some emergency funding for such situations and it may be worth exploring that. Ask your GP for help ?

I hope Robin is happier now he’s home.
Best regards.
Bob Isle