Friday 22 July 2022

Good days and bad days

 . . . it's rained, steadily I think, overnight and the garden has suddenly perked up and my Malvern Hills climber (requested birthday present from our son this year) has suddenly shot up, and more buds to open now.  A cool 14 deg. C today - perfect walking weather.  I can now empty the washing up bowl down the sink, but I will still use most of the water to top up in the garden as the soil will still be so dry and as you can see, the Hollyhocks have been struggling, despite my watering them more than anything in pots in the yard. (I chose NOT to share the bottom foot of dead and yellowing leaves or in another pot, one which has just become totally dessicated.)


We are trying a new tack on the slow-to-work medication now.  Given that dairy products can interfere with the Levodopa take-up, especially milk, we have changed from cow's milk to Almond Milk.  Two days in, Keith found it easier to walk yesterday.  So, we will see how this progresses - it may just be a coincidence and the meds are finally working.  Whichever, K was walking well up and down the kitchen yesterday, on the flat tiles (the yard is covered in large stone chippings and he finds that a difficult surface) so is going to try and increase this daily, along with his "chair squats".  We are still waiting to hear when the Physio is going to come back but perhaps it won't be until they see how well the medication is working. It would be lovely to go and walk in the Groe each day - I miss walking along by the Wye, and seeing the wildlife.

I'll grow these pretty pink Nasturtiums again.  I'll save seed this year.

        One other new thing - K has suddenly changed holding his walking stick from his (good) left hand to his (bad) right hand. Not an intentional decision - he just picked it up with the disabled right hand and is ok using it on that side now.  

    Anyway, my heart goes out to anyone suffering from this horrid disease - effective treatment seems to vary from person to person and it seems so random.  ((HUGS))  


28 comments:

  1. Good morning! Last time I commented we were both about to move into our dream homes, you did - we did eventually after having had the dirty done on us by our buyer so had to start again. Now my husband has a brain tumour and things are very difficult. Mobility declining and memory becoming increasingly dodgy. Life is just a little bit cruel at times. He's not even 60. His father had PD - lived well for many years with it. Thinking of you. xx

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    1. Hello again Julia. Oh, I am so sorry you lost your dream home and hope you have found one now, although with your husband's diagnosis, perhaps you are having to stay put? I am SO sorry to read that your husband has a brain tumour. You're right - life can be cruel and so unfair. Your husband is so young to have developed this and it sounds like it is not a benign one but I hope that his memory and mobility don't deteriorate too quickly. That must be so hard for you and my heart goes out to you. We are hoping that Keith will able to enjoy the longest time possible with better mobility once the meds kick in. Please keep in touch. I thought long and hard before sharing Keith's journey, but if it helps others - in the same boat or not - perhaps it is a positive thing to come from it all.

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    2. Thanks for the lovely words. We did get our dream cottage after managing to resell our house immediately. Now I wonder whether the gods were trying to tell us something as we have a big, stepped garden and steep stairs inside. We shall see how long he can cope for. Thinking of you.

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    3. Oh I'm pleased - and it's STILL your dream cottage, whatever the future brings. There are always gardeners and stair lifts (will probably need both here in due course). That said, the gardener I had here temporarily couldn't pull the skin off a rice pudding he was so feeble!! Chin up Julia. Please keep in touch.

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  2. It's nice to hear that there is some signs of improvement. There's not much I can do to offer advice about Keith's condition but what I can say from experience and research is that if avoiding dairy helps, watch out for all the things that it is hidden in. There is whey powder used to bulk out so many foods these days. If you can cut out milk, butter, yogurt and cheese and perhaps use the vegan options that make use of nuts and coconut oil rather than too much soy it might help. BUT, if he wants to go back to dairy after this trial make sure that you DO keep some form of dairy in his diet while he is avoiding milk etc. Maybe a small amount of cheese or yogurt, which some people with dairy intolerances can tolerate in small amounts. If you cut everything out and suddenly bring everything back it can make you feel really horrible for a while as your system struggles to cope.

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    1. Well, I cook from scratch and Keith is a fussy so-and-so and won't even eat supermarket sandwiches if we are out!! He's still having cow's milk in his tea so there's an element still there in his diet. We will ask the PD nurse about calcium next week, as he needs that but if it prevents the meds from working . . . I know it is in leafy greens, sardines, seeds, beans, lentils, figs, edamame etc - but he isn't mad on leafy greens, and as for beans and lentils - highly suspicious!! I even have to wash the tomato juice off baked beans as he doesn't like tomatoes . . .

      Thanks for the tips anyway, and let's hope he can make progress now.

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  3. Oh those dark colored Hollyhocks are divine. I have a sunflower called Chocolate Cherry which is dark like that. https://crochetbythesea.blogspot.com/search/label/Sunflowers, I'm still waiting for it to bloom this year, it is in bud. Hopefully soon,with all this heat, a nice slow soaking rain would be well suited about now.

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    1. Although I cannot compete with the cottage along the main road between Llyswen and Glasbury (they are the full 8 feet tall!) I plan to have Hollyhocks here permanently now. They self-seed willingly so fingers x'd mine will too. That deep almost black colour is beautiful. Must look out for Chocolate Cherry sunflower seeds to complement it.

      Unfortunately your link didn't lead to the Sunflowers post, but love your blog - that Coalminers' Cake sounds lush.

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  4. Glad that Keith is showing positive signs with his mobility :) I am still using my grey water, the pots at the back of the house don't get rained on as much as the garden, bit of a rain shadow, so they quite happily quaff the washing up water !

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    1. I have a bucket of grey water waiting to be chucked over some of the Bank plantings, as they are living in a perpetual desert. It should have been planted with Alpines not shrubs. I have compounded matters by adding tall perennials at the back, and roses! It rained all day yesterday. Phew!

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  5. Good to hear a slight improvement in Keith whatever the reason. Hollyhocks look beautiful so cottage gardeny and I adore those pink nasturtiums. I have some red ones this year.

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    1. We think it's probably the meds kicking in now. Will slowly change back to normal milk and see if there is any difference. I like to have a different colour of Nasturtiums to try each year - this year it's been pink and a sort of purple.

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  6. Oh my goodness, I love those pink nasturtiums, so different
    Reading through the other comments makes me feel very selfish for ever complaining about anything - we none of us know do we what's around the corner?
    Alison in Wales

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    1. Hi Alison - thank goodness we don't know what's around the corner. It's bad enough having just a hint of things to come. I think the pink nasturtiums came from a garden centre, so not too hard to find. They're called Cherry Rose.

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  7. Gorgeous dark hollyhocks, I love almost black flowers like Iris Sable and Pelargonium Dark Secret and of course Chocolate Cosmos. My rosy-pink hollyhocks (from ‘foraged’ seed) grow in south-facing and sun-baked stone-topped hardcore right by the garage and they are upright and perky and have never been watered. I simply sprinkled the seed and let nature work her magic. Last year (a rainy summer) they grew too tall and toppled over, this year they are perfect with each stem having about a foot of flowers yet to open. Let’s celebrate the good days BB. Everyone has bad days and good days and I think that there are a lot worse conditions than PD. I know we are three months further on with the drug therapy and S is some years younger than K but there is light at the end of the tunnel. This afternoon we went garden visiting and the owner said to S, your voice reminds me of a famous actor. Now S’s voice had been weak and quavery for most of lockdown and I could not understand why. Now, four months after the diagnosis, his voice is back. I mentioned the PD diagnosis (I know, I know, but it is good to share) and how it had made my day realising that yes my husband has his voice back. Encourage Keith to keep moving and don’t change his diet - I have not come across anything linking calcium intake with decreased efficacy of the cardidopa) and there is nothing wrong with milk, plain yogurt, proper cheese. We’ve just eaten aubergine lasagne - roasted aubergine, fresh lasagne, proper buffalo mozzarella, homemade tomato and red pepper sauce, home made bechamel and fresh parmesan. I always bake lasagne in a large brown dish bought from Powder Mill pottery on Dartmoor and it will last us for two main meals and one lunch so six portions altogether. Just keep cooking your normal homemade fare that Keith loves and enjoys and don’t deny him the simple pleasures. And please try not to worry, no one knows what is around the corner. Here ends my lecture! Sending love and positive thoughts and the knowledge that You Are Not Alone. Sarah x

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    1. Morning Sarah, I saw a very dark Pelargonium when I visited an Open Garden earlier in the year. Stunning colour. I will broadcast my Hollyhock seed at the front of the house then as we have a good gravel base - a few Aquilegias have already set up home there after I walked over it with a handful to be broadcast on the bank.

      Indeed, good days need to be celebrated. Had enough bad ones since getting to our new home, and as someone said, all the joy of moving has been sucked out and overwhelmed. You're right of course, plenty of worse things than PD but it's so frustrating seeing Keith struggle so and the earth mother in me wants to somehow wave a magic wand and "make it better" like the kids always expected me to do after they'd fallen over or hurt themselves. Of course I can't.

      Keith will be glad to get his voice back as his has been very weak and frog-in-the-throat for a good while now too, though the lack of balance is the worst thing by far - and of course the accompanying lack of confidence. I am so glad your husband has his voice back now.

      I did suggest a short walk by the Bowling Green this morning, where it is totally level (he cannot manage the least 1 in a 100 type slope) but he'd rather keep walking up and down the kitchen as he is more confident doing that at the moment. It's just good to see the improvement.

      Well, I burst into tears this morning when the words Powder Mills Pottery leapt off the page at me. In happier times, we would visit there and I have a couple of Carole Glover's pieces - a beautiful owl mug and a big Thomas Toft charger - Keith's choice, I wanted a pile-of-birds piece . . . It sounds like your brown dish is one of Joss's wood-fired piece-of-the-Moor pottery, using pure Dartmoor clay from a stream bank. Your meal - as ever - sounds toothsome!

      We will stay with his normal diet - I had really been worrying about the calcium as he had stopped eating yoghurt, cheese etc because of it affecting the pills for his Thyroid problem. NOT good.

      Thank you for your support. It is definitely SUCH a help to know I'm not alone.

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  8. I was diagnosed with young onset parkinsons 4 years ago aged55 though consultant reckoned I'd had it 5 yrs or so. Just a thought, have you been in contact with Parkinsons UK? I have had a lot of help from them.

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    1. Hello Anon, I am SO sorry to hear that you have young onset PD (my g. grandfather did, but there was no treatment for it 100 years ago). I've been to the Parkinsons UK site, but not made contact. Thank you for the tip. I hope you have effective treatment.

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    2. If you ring their helpline you can arrange a telephone appointment with a PD specialist nurse if you have an queries re meds. They also have advisers for benefits, blue badge type stuff. They have local contacts too. We have just moved house and my local contact got me physio home visits with OT input for equipment to help me get in and out of bed and bath. I can not praise them enough.

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    3. Our specialist PD nurse is just a mile away and we are due to see her on Thursday, for a review of the Meds. Hoping she is pleased at K's progress. We have a Blue Badge - I got that organized earlier in the year. The Parkinsons UK people sound very helpful, so I shall certainly contact them if I need advice/help. Thank you.

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  9. I am glad to read that Keith seems to be improving and I hope it continues.

    God bless.

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    1. Oh gosh Jackie, so do I. It has been such a long haul to diagnosis, with such a total smoke screen from other medical problems - if only we'd realized before Covid that this could be Parkinsons, but he had just slowed down then, with a stiff right side.

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  10. I woke up this morning to the sound of rain and thunder. It was a wonderful thing to wake up to.

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    1. Then come winter Debby, we will be missing the sun and heat!! Contrary creatures, us humans.

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  11. We love your dark hollyhock and so envious that you can grow them. Any attempt we have made just ends in rust.

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    1. I have rust on some of mine too - the ones I grew from seed last year which went in the soil. These have escaped.

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  12. First of all I think I need to say Malvern hills is a rambler not a climber, I have it on the corner of my patio and it is doing superb at the moment. You do have a nice selection of plants though Hollyhock is not something my wife grows as it is subject to rust, foxgloves on the other hand we just leave to grow where they want. Good to hear Keith is making progress, more than I can say for my lad as the heat knocked him for six but it turned out it was something else. He was the one person who did not believe and he caught it. Sort of eating humble pie now.

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    1. Spot on Billy - why didn't I notice that?! I have a spot on the grassy stretch the other side of our Holly hedge I can put it, so there's a job for this week.

      So sorry your son suffered so during the heatwave - not the best time to get Covid, if that's what he has.

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