Continuing with REM

 Well, the new tablets Rich had prescribed for him didn’t work. If anything they made him worse. I rang through to the Parkinson’s help line as sleep has been getting less and less. Monday night, all Rich wanted to do was get out of bed every 10-15 minutes. I ended up not having any sleep from 1am onwards. Rich did manage to get back to sleep eventually, but my brain had decided to stay awake! Anyway, the Parkinson’s team got back to me and said to stop the new tablet. They are going to get back to his neurologist and get his advice, then contact me again with what he says. Last night wasn’t too bad a night. We both got some sleep last night which felt wonderful 😊

REM Disorder

 My night times are non existent at the moment. I have had minimal sleep now for nearly two weeks. Rich’s REM has escalated. He was prescribed new meds, that should help, but they seem to have made it worse. He goes off to sleep fine for an hour or two, then he’s waking up about every five minutes, getting out of bed, thinking he needs the toilet, or just not knowing why he’s getting out of bed. He gets restless and frustrated. I rang the Parkinson’s team and have booked a phone call, hopefully they will be able to help. Watch this space…..

Enjoying some morning sunshine

 

Granny Duties

 Last night we had out 9 year old come and stay over for a few nights, as his mummy and step dad are away. This means doing the school run 🤪 Today went well though. After getting to the school at a ridiculously early time (I like to know I can get parked up ok) I saw the young man into school, and came on home. Rich and I walked the dog, then we walked into town and did a small amount of shopping and some odds and ends that needed doing. Before I knew it, it was time to go and get the young man, again, I go nice and early to get a nice parking spot. It’s quite nice doing that, I take my kindle and enjoy a nice little reading time. 

Had to follow up with our surgery about a letter the Parkinson’s nurse had sent to them about a prescription for Rich to help calm his REM disorder. That’s all sorted now, just waiting for it to be dispensed. I will chat more about the REM in my next Parky chat. 

I mentioned in my last post about our front backing out onto a recreation ground, which is beautiful, until the mowers come out. Today they had at least three going round, which promptly set off mine and my mums hay-fever 😕 That is a downside of having such lovely green space just outside my front door. I’ve had to take my antihistamines a lot earlier this year for some reason.

So blessed

 One thing that is helping Rich, is walking the dog with me in the mornings. She can’t go too far as her back legs aren’t brilliant, she will be 10 this year.

We are so blessed where we live. We have a sort of back to front house in that our main garden is in the front, and that backs on to a nice sized recreation ground. Also, we don’t have to go far from our front gate to be amongst nature. 

We have a brook not far from our house, that runs down into the town, that can be followed by foot. We can be in our little town, walking along the brook in about 10mins, taking a slower walk. By the brook is a pond. The brook, and pond have ducks on it, and moor hens. Sometimes a swan turns up, and at times a heron. I’ve also, once or twice seen a flash of bright turquoise as a kingfisher shoots by.

Up until recently, Rich had lost interest in the nature around him, since he’s had his meds tweaked, that interest has come back. A few weeks back, he pointed out a wren that was perched on a bush by the pond, and now comments on the bird life and their chirping loads. It’s so lovely to see him interacting with nature once more.

A few weeks ago, around the pond there were some lovely snowdrops, now the daffodils are flowering, and I have to be honest, I love daffies. They are such a happy flower, and I can’t help smiling when I see them.

On our dog walk this morning we saw a lot of blackbirds and wood-pigeons as well as the usual ducks and moor hens. Also, flying around, or should I say soaring, was a red kite. Always lovely to see them. Sometimes they fly so low, you can see the beautiful markings under their wings. We often see robins as well. Some seem to be un-afraid of humans and will just sit on the branch letting us have a good stare at it 😊

One thing that has helped Rich by coming out walking in the mornings is his walking has improved. His strides are bigger. He can’t walk over fast, but his speed has improved. And another thing that I’ve noticed is, even though his antidepressants have been changed, and are helping enormously, going out daily, getting out amongst nature, has helped his well being loads 😊

2023

 2023 was a sad year. It was a lot for Rich to cope with. The anxieties that come along with Parkinson’s are difficult to cope with. Sometimes his days feel so dark. It was a year that we lost two close members of our family. First Rich’s brother passed away, then our brother-in-law, his sister’s husband five months later. Both victims to cancer. Two of the loveliest men ever. In amongst the sorrow though, days within losing Rich’s brother, we welcomed our 5th grandaughter into our family. 

That, I suppose, is life!! 

It was a year where we had to digest and process that how we envisioned our retirement wasn’t going to be. Rich had planned to semi retire, still working a couple of days a week. He wasn’t ready to fully retire. That wasn’t to be though. He was unable to work. His confidence was gone, and he felt very tired. Up to his diagnosis, his mobility was poor. We were very concerned. We’d been told that his problems were pointing towards a mental health disorder, and in a way, we were hoping it was. We both stuck our heads in the sand, not wanting a Parkinson’s diagnosis. The thought of that was frightening. Once diagnosed though, it wasn’t as bad as we thought it would be. Don’t get me wrong. We didn’t want this diagnosis, but when Rich lost his mobility, we were actually relieved to know what was going on, and, although we know there’s no cure, meds have given him back his mobility and a decent doable life. 

Along with little Olivia entering our lives in July of that year, another highlight, that took some of the sad sting out of 2023, was that in May of that year, Rich was able to walk his youngest daughter down the isle. Something at the beginning of that year, we didn’t think he was going to be able to do 😊

Knitting update

 My knitting needles have been very busy. To be honest, they’re always busy. I’m not going to post three years worth of knitting 😱. Just going to post a few of my latest.

A lot has happened

 A lot has happened since 2022. In 2022, it was noticed that my husband wasn’t ‘quite right.’ At first we thought he was depressed. His brother was diagnosed with a Brain tumour, and one of our daughters was recovering from lung cancer, plus a lot of other stuff. His place of work were getting concerned, and his health just seemed to be deteriorating. After a GP visit, he was put on antidepressants which were helping, but not overly improving him. Then, at the beginning of 2023, Rich lost all mobility and ended up in hospital where he was diagnosed with Parkinson’s. As he didn’t have any tremors, it wasn’t picked up until then. There was a marked improvement the next day of taking medication to help with Parkinson’s, and so, a new journey in our lives began. Now two years in, he is now having a medication tweak, in that his Parkinson’s meds have been increased, as he has Bradykinesia, his muscles are very stiff. Also, his antidepressant has been changed. He also suffers with high anxieties, that go along with Parkinson’s.

These new antidepressants have worked wonders in the daytime. His confidence is returning, and he’s enjoying doing small DIY jobs again. Something he’s had no interest for a few years. Night times though it’s been a different story. As part of the Parkinson’s, he has an REM disorder, and acts out his dreams, and this new antidepressant has worsened this. After ringing the Parkinson’s help team, he now will be taking a tablet to counteract this. He hasn’t started this one yet, as we’re waiting for the GP to prescribe it, so watch this space.

On top of this, Rich has to have a prostrate test. He’s just had his bloods done. He has a GP follow up appointment next week. So again, watch this space.

We are both retired now, well Rich is. I seem to be busier than ever lol. We’ve been blessed with three new grandchildren within six months, making that nine little blessings. Little Luca entered out family on August, followed by Jude at the end of January, then ten days later, in the beginning of February, little Daisy came along. We are so blessed.

I’m hoping to be able to use this blog to share my journey as a care giver. (My 93 year old mum also lives with, so I am also a carer to her.) To share Rich’s journey coping with Parkinson’s. Also, how I’m hoping to make diet changes that will encourage well being and better health, especially where the Parkinson’s is concerned. Finally I hope to share how we are coping as a retired couple in keeping our lives as simple as we can 😊