How Am I Supposed To Look?

Hello Friends!

An apology. I am trying to do a lot of things at the moment, sorting out the house, selling on Vinted, keeping up with my Walk 100 Miles For Parkinson's Challenge, getting the roof fixed, dealing with the incompetent Welsh Water, so on and so forth, and then the odd extra such as reapplying for my Blue Badge, well, it keeps a girl busy, but it also means my replying to your blogs has slipped somewhat. You see, typing is not easy and typing out my own blog takes it out of me.  Something's got to give!

Anyhow, I just wanted to dip in here this evening to say, as many of you probably already know, that the Parkinson's UK garden designed by the amazing Arit Andersen, at RHS Chelsea Flower Show was announced this afternoon as the winner of the People's Choice Award! As voted for by the public, not the judges {who in the opinion of the public know nothing about gardens!}

I sat here and cried. Happy Tears, of course, but oh! how foolish I felt when, sitting and sobbing into my Kleenex, there was a tap at the door. I thought it was one of the builders so made a sorry attempt to say come on in. AArrgghh! it was a previously unknown to me courier! What on earth did he think was happening? LOL

However, it doesn't end there. I sort of blubbed out "it's okay, it's just that I'm watching the RHS Chelsea Flower show and Parkinson's UK has won the RHS People's Choice vote, and it's hugely meaningful to me because I have Parkinson's" He looked quizzically at me and said, "you haven't got Parkinson's" which, on so many levels highlights the sort of problems we who do have it face!

I have got Parkinson's, but how does someone who has Parkinson's look? How are we supposed to look when we are harbouring a debilitating neurological condition that manifests itself in any one of very many ways? How do people without Parkinson's look?  Well, I have tremors. They are probably the most prominent symptom that most people associate with Parkinson's, but not everyone who has Parkinson's has tremors, and I don't have them all the time, and not everyone with tremors has Parkinson's. I've gained weight, but does that mean I've got/not got Parkinson's? Same can apply to speech, eyesight issues, loss of smell, taste, appetite. Some have hallucinations, or insomnia, or oedema, others don't. Then there are the symptoms connected with gait, stiffness, freezing, and shuffling. My skin and hair are awful, due to the medication, but then so is the hair and skin of others just because that's how it is.  I could go on, there are over 40 such symptoms, all of which might be exhibited by someone with Parkinson's, but equally can indicate something else entirely unrelated.

Naturally, as the condition deteriorates {remember, there is NO CURE at present} then some of these symptoms become more obvious and others will develop. Right now, I am grateful that {so far} my visible "symptoms" are occasional tremors, I drop things, I am stiff and slow, and I stoop. Sometimes I shuffle, my balance is off, and I need to stop and rest more than most. But others with Parkinson's look quite different to me, in the same way that you, as you are reading this, look different to me, except you don't have Parkinson's {at least I hope you don't} On a good day, now that I've started to take more care over my appearance, if I'm dressed tidy, wearing make up, and have accessorised well, you might not notice anything untoward regarding my health, other than I need to use a walking aid.  

With over forty known indicators, and not everyone gets more than a few, and everyone gets a different selection at the Pick 'n' Mix smorgasbord that is Parkinson's, how can you determine how someone looks?  Take medical conditions out of the equation.  Someone might be stiff and slow because they have arthritis.  They might also have thinning hair, psoriasis, and drink a lot of coffee that manifests in tremors of the hand. They do not, however, have Parkinson's.  Someone else {ME!} might be stiff and slow, and have thinning hair, very dry skin, and tremors, and in this case {MINE} they have Parkinson's.  Get what I am saying?

My Parkinson's does not control who I am or how I look.  I do.  It may contribute it's five pennorth from time to time, but right now, in the here and now, I am still in charge of how I look, and as the man said today, "but you don't look as if you have Parkinson's".  What worries me most is that, although I don't LOOK like I have an incurable disease, I DO HAVE an incurable disease, and one that causes a lot of frustration {when I can't move, or bend to pick up some of the things I am constantly dropping, or hold a pen to write, and especially when it gives the impression to others that I am lazy, not interested, or unsociable.  It's all part and parcel of a very complicated and deeply misunderstood {currently} incurable medical condition. 

Okay, I've rattled on enough tonight.  I only dipped in to say how chuffed I am over the winning garden, and I've rambled on and on and on!  Tomorrow, I need to share with you a rather amazing and magical thing that is happening right now in my "vestibule"! Well, amazing if you like house plants!

Until next time

💙🌷💙

Pulled in All Directions

Hello Friends!

I seem to be pulled in all directions right now.  It's good that things I have waited on for months are finally happening, but I could do without them all happening together.  

To try and take my mind off things, I've been studying on my Wild Welsh Herbal Medicine 2026 course and have strained and bottled my Nettle and Rosemary infusions.  Stinging Nettle = Danadl Poethion, Rosemary = Rhosmari, and still in the Kilner is Dandelion = Dant y Llew.

Danadl Poethion Infusing

Danadl Poethion Strained

A very handy funnel with an interchangeable base

Preparing to strain the liquor

Rhosmari Infusing

Rhosmari 

Rhosmari

Think back to last December and the time I hurt my back which resulted in all kinds of help throwing itself at me.  One of the things was a more appropriate bed, not a profile bed but something new that they are introducing, a cross between a bed and a chair.  Well, it seems these beds are designed for people of taller proportions than me, so they have ordered a design for those of us of more diminutive proportions, and it has arrived.  So I get a phone call was to book an appointment in the middle of June for me to try it out, then, if it suits one will be ordered.  When will I get this bed, I wonder?

I had one of those phone call appointments, you know the sort, the clinic will contact you between 8:00 and 2:00, only in this case they didn't.  Another half a day wasted.

There's been a slew of parcels that are delivered between 6:00 and 8:00 which means I can't go out for my walk as there is nowhere to leave them if I'm out.

Two days ago, I got a phone call to tell me the roofing contractor had a cancellation and could he come on Thurs/Friday this week to fix my roof.  Well, I could have used more notice, but I have been waiting since March and if he couldn't come this week then it would be late June.  No brainer, he was here today!!!

Then, late this afternoon, Welsh Water reared its ugly head again!!!  This afternoon, I flushed the loo and the refilling cistern sounded rather poorly. It took ages, spluttering all the while, to refill so I waited and I flushed it again and out flows all the disgusting crud you can imagine. Taps on the sinks doing the same, and the concerto finished with no water. Phoned WW, oh, yes, they have been working on the stopcock again and they will come back to finish the job. Er, so what do I do in the meanwhile for water? Good question. I was told it might take 24 hours, but try leaving taps open, and eventually a filthy brown trickle appeared. By this time, I had hit the roof, 24 hours without water and no notice??? I began pointing out health issues, hydration issues, water for tablets issues, etc and not a drop of clean safe drinking water in the house. What can you do, though, when Bozo on the other end is a complete Jobsworth? I know I can always get a pitcher or two of water from a neighbour, but that is not the point. Eventually they sent someone around with a 2ltr bottle of cheap drinking water. He flushed the system and I now have water, allegedly safe to drink. However, it will be three working days before they finish the job {pavement dug up, only this time we have barricades} and Sat, Sun, and BH Mon don't count. He did say that the mess they've left is not satisfactory, has been documented and reported. Ho Hum . . .

Somehow, with all these minor dramas going on, in between the dramas and the inclement weather, I have for the most part kept up walking, although I have missed a couple of days when it has been logistically impossible, unless I creep out in the dark of night! Last night was not pleasant, as there was a sea fret starting to slowly slip across the land, and by this morning it was fully ensconced over the land.

Pretty pink Hawthorn

Bowers of Flowers the white Hawthorn forms a Bridal Canopy over the Bridle Path

I remember well this view when Carn Llidi was not hidden behind the giant Sycamore tree that stands in the way

In only a few short weeks, the hedgerows have gone from bare stone to floral fantasia!

The greyness of the slow sea fret as it engulfs the land from the sea

Sycamore Twins

So, the all too short reprise for pollinating insects is over, as the Council mowed through everything!

I hope that today Welsh Water will return and finish the job, and I hope the roofers will finish too, for my lawn is a mess. They will clear it up, but not until they are finished!

Until next time!

💙🌷💙

Another Week

Hello Friends!

As a result of the overwhelming generosity of everyone, I have increased my targets both of donations and miles walked. I've received my QR code but have decided not to put it on here because of the numbers of scammers we get.  

The weather is on the fickle side; it was supposed to be dry with rain coming in mid-morning.  I wanted needed had to go to the National Trust shop for some of their rather yummy fudge {I know, I know} and the shop happens to be rather conveniently located on one of my loops. I had to wait until it was open, 10:00 a.m. so fervently hoped the rain would cooperate.  As it happens, it is still sunny, but bitingly cold, and no sign of rain as yet.  

Dogs are most welcome at the NT and Cathy, the lovely manager, always has treats on hand and, with the owner's permission, every dog who brings their owner in gets a treat or two.  They even cater for dietary intolerances such as gluten free, sugar free and fat free!  I wanted to take photos, but there are strict rules of data protection.  

I feel there are only so many photos of the same hedgerows that I can take, so today I took a few photos of clouds, but I did begin with this one.  It's an update of a nearby public space that was mowed by the council. They cut half and left half to wild.  It isn't quite three weeks but already the patch that was cut is full of flowers!

a peek inside my rollator basket.  I took a lightweight jacket with me today, there's my water bottle, my purse, oh! and some fudge.  For energy, you understand.

Just a couple more photos, of the sky before the rain comes.  We have beautiful, big skies here, if you only take the time to look up!

After nearly going head over heels on at least four occasions today, I feel a strongly worded letter will be on its way to the local council.  The one and the same that wasted £5 million on an "Instagramable Bridge" in Haverfordwest.

Until next time  

💙🌷💙

A Week of Confusion

Hello Friends!

It has been a week of upsets and confusion, stressful situations and all could have been avoided.

The first of these issues was with Welsh Water.  I did say I wouldn't bore you with details, but oh! what a load of time and money wasters they are!  We all agree on one thing: they don't know what they are doing, there's a criminal amount of water wasting while they take years to do repairs, and we are the ones footing the bill. okay, that's three things!

On Tuesday I received a vague message from Welsh Water telling me they would be here the following day.  I phoned to find out what it was about.  

Apparently, there is a leak which needs fixing but they couldn't provide anything specific as to where it is, or exactly what access would be needed. I told them it was too short notice and that I needed more information.  Their answer was not helpful.  I called again and the help was much better.  It was explained to me that a leak had been detected in August of last year and that I had been notified in September of said leak and told to get it repaired.  I have received no such notification.  So, now they are coming to fix it and I will be billed.  I asked where the leak was.  They don't know, so they will be all over my garden and house trying to find it and then digging up the spot where it is located. This has the potential to be under my drive, or in my kitchen.  It could even be in a neighbouring property as my supply goes under the garden in front and they have since built a big extension over it. They have no legal obligation to put right what they dig up.

I said I needed more information; they can't just barge in and dig up my floor! Tuesday was not a good day as I had several appointments and that blocking my drive would not be acceptable.  The lady was very helpful, told me she had passed on my concerns, cancelled the appointment and requested a rebooking to be discussed with me so as not to clash with appointments and to give me 48 hours notice. Fine. Or so I thought!

Tuesday morning, my a.m. care call helper left around 8:40 and within three minutes was phoning me to ask did I know Welsh Water was blocking my access and digging up my drive!!!  So much for the helpful lady the day before.

More stressful calls followed, but apparently the leak was detected just on my side of the stop tap, no further disruption, so I just let it go, it was done. 

Until Wednesday.

I got a phone call from the lady I spoke to on Monday about rescheduling the appointment she'd cancelled and to set up the replacement.  I explained they'd been, it was done, and that was it.  Oh, no, she said, this is the next one as they now suspect more leaks!!! 

I shared this on Facebook, and all I am hearing is that nearly everyone in the area seems to be having the same problems with Welsh Water as I am.  Some have been waiting for their repairs to be done for over two years!  Some say as soon as one leak is fixed another is found.  It goes on.

It certainly sounds as if there is a massive issue with the infrastructure, and our water rates just keep going up but the leaks that are causing all the issues are not being fixed in a timely fashion.

On Thursday I heard back from one of the OT's who came to see me in December last year {remember when I hurt my back?} who has finally heard back with the information required for some special equipment to help me.  They will be bringing it out for me to test in June and then it will be ordered.  I wonder how long that will take?  Good job it wasn't urgent, or was it?

Every month I get a treat by way of a subscription for several frozen ready to cook meals from COOK, for the days I don't feel much like cooking. A few days before hand I receive an email to remind me to make any changes to my order which will arrive the following weekend. Except this month, they had a blip in their system, and the nudge emails didn't make it to everyone.  My order was incomplete and on it's way and I could do nothing to add in what I wanted {particularly the Sticky Toffee Pudding and Lemon Tart}  They were very good about it, offering to refund me in full, but regardless I am now sitting with empty space in my freezer until next month. These things happen, but I was looking forward to my puds!

So between the drama and the bad weather, walking has been reduced to a minimum.  It has been annoying that it's been good while my hands were tied and I could not leave as the Cook parcel has to be signed for and put in the freezer immediately, and then the rain came!  So, I have been doing exercises and such to make up for missing the walking, and I've made a note of what I need to catch up on, which I will do by way of doing two consecutive walks joined in the middle.  The good news is I am well on target and might well be looking at extending my original goal.

I do so very much enjoy observing the changes in the hedgerows, sometimes almost overnight, the new things popping up, and how quickly other things are growing, what is doing well, what isn't doing as well, so on and so forth.

The Elderflowers seem to be having a very good year

Goosegrass living up to an alternate name, Cleavers, climbing the wall

Possibly Common Ragwort starting to flourish in the lane

Plantain a plenty Ribwort Plantain

Cats Ear or False Dandelion

{uncertain} possibly Wood Avens, aka Herb Bennett

Keeping an eye on the changing landscape, the large Sycamore is starting to fill out with leaf, and the 

Hawthorn now looks like a puffy white snowball 

Looking at tomorrow's weather, it seems I will be out early for my walk, as there is possibly heavy rain on the way.

Until next time 

💙🌷💙

A Brace Is Needed

Hello Friends

Today, with winds in excess of 40mph, and an injured wrist, and Welsh Water to deal with, I just could not manage my walk.  With the weather taking a downward turn, contingency plans are being made.

The wind blew hard all last evening and through the night.  Much banging and clattering was heard, and it was confirmed this morning with the way pots and other garden bits and bobs were strewn across the patio. This is what I've been worried about. When it is blowing like that, it is simply dangerous for me to step outside the door as my balance is awful and I cannot risk falling.

Last year, I injured my left wrist which took months and months to heal.  When I began walking, I anticipated sore legs and painful feet, but no, these haven't happened, but what I did not see coming was this:

I noticed a few days ago that pushing the rollator was aggravating it. Funny how I anticipated sore legs and feet but did not anticipate the effect it's having on my neck and shoulders! I should have realised, the rollator weighs about 20lbs, so it's added weight to push along, or hold back with brakes firmly held when going down a slope.  Strain was inevitable. Hopefully the brace will strengthen my wrist and keep it in order!

Then there was the whole issue with Welsh Water.  It's a very long story, I won't bore you with finer details, suffice to say it was not a good, stress-free start to the day to discover them parked on the road right across the bottom of my drive {and only access} digging up the pavement!  Two other houses have access over my drive, so three of us had access blocked, and I discovered my water turned off and not a word of warning to be prepared!  Fortunately, I'd had my shower and filled the kettle before they started, but other things had to wait.  

The size of the repair does not give a fair representation of the size of the blocked area of pavement when covered with tools and workmen, not to mention the van parked on the road.

Then I looked at the forecast for the coming days and it does not bode well. 

Tomorrow {Thursday} we might have thunderstorms.

Friday doesn't look too bad, but thereafter the days are an odd assortment of varying types of rain from drizzle to heavy.  I will have to plan carefully and try to dodge in and out between showers.  I no longer sport the range of useful waterproof trousers, gaiters, boots and jackets I once almost lived in.

I am making contingency plans, just in cases, so that I won't drop my fitness levels I've regained.  Hopefully I won't need them, but as I say, just in cases!

The fundraising coordinator for Wales has been in touch.  Some people are having difficulty getting my link to work so she is sending me a personalised QR code which should resolve the problems.  I will send it on to those who have told me they had problems donating.  Thank you all so very much!

Diolch o Galon!

Until next time 

💙🌷💙

Swallows and Pheasants

Hello Friends!

Today turned out much better than the forecast said it would be.  You really can't rely on it, and it's better to look out the window and make an educated guess, bring a brolly along if you think it might be needed.

What a wonderful walk I had today!  I went out around five~ish, and had the presence of mind to take my medication with me.  I have to make sure the Madopar is taken to a very strict routine or else it won't do it's job and then what's the point of taking it? 

As I shared with you yesterday, my route is varied and I try to make it a little bit longer each day.  Today, I sort of got lost in all the beauty of a delicious spring afternoon and found I had walked a few hundred yards further than I had planned!  All was well, I took my time coming back, and it's easy to disguise multiple rest stops under the guise of needing to take a photo!

I have yet to master the fine art of taking a selfie, so here's a lovely photo of my gardening hat.

I bumped into my neighbour who was on her way home from the same walk I was on, we had a lovely chat and more sponsorship was promised!

A short while and a few more images to identify later

I found myself in old, familiar territory

I tried to do a Facebook Live, but it was an epic fail!

FB Live

Maybe that link will work, maybe it won't.

By this time, I realised how much further than planned I had actually walked, and if I maintain this pace I will be down on the cliffs by the end of the week.  However, the weather might have different ideas. Have you seen the forecast?

My heart sang, my spirits soared along with the sightings {for me} of the first swallows of summer!  The swooped gracefully as they fed upon the thousands of gnats swarming on this grand afternoon. Then I heard the old, familiar crake crake of the pheasant!  What joy that brought to me! My heart was full!  I looked across the field and there he was, his head popping up above the grass, then back down and up again!  You can't see him, but I could!

Time to turn and wend my weary way homeward 

As I wandered along, I took some more photos of plants and flowers for my records

The Hawthorn is quite beautiful

Silverleaf, soon there will be the tiny, yellow flower

Plantain

Cow Parsley, such a pretty, frothy picture 

Buttercups in profusion

and finally, the cheeky little Cleavers or Goosegrass will sow its seed anywhere!  Not quite as bad as the drain I saw with several well-established Sycamore saplings growing well therein!

I hope the weather isn't as bad as the forecast implies, with thunder and lightning, for that will put a serious dent in all my plans.

Until next time

💙🌷💙