I Prayed for Rain!!!

Hello Friends!

I won't pretend otherwise, I am so tired today that I prayed for rain and wind so an enforced day of rest would be on the books!  Two days of such short distances and I cannot believe my energy is zapped! It was a real struggle today, I tell you. But I pushed and I did it.  Not only did I did it, I did it in style by nearly doubling my distance!  

I did go a bit later today, the weather is not pretty, and I had to try to give it my best guess as to what time would be best to avoid the heavy rain {if it comes}.  It is misty and murky, and today's photo of Carn Llidi shows the hill has gone!  It is cold and humid, everything is sort of clammy, and it did rain a little but nothing to worry about, and I have a new, red raincoat.

Above is a picture of Ffordd Aaron, or Foster's Way.  It is a footpath down to the coast that takes you across meadows and buttercup, cow filled fields by the coast.  It was a favourite path I enjoyed to travel, but it is too uneven underfoot for me these days.

I really had to push myself, but thanks to my friend Charley I got underway and off we went, along the Bridle Path, up to the road, then across to the National Trust where I hit on my old work colleagues for support, and then back home for a much needed sit down and a cup of tea.  

My tremors are not responding well to this change of routine! They are getting very disruptive, an indication that the new routine requires more dopamine than my body can produce. I am surprised, though, that my shoulders are hurting far more than my legs and feet.  Why is this so, I wondered?  Then it hit me . . . I am pushing my rollator, which weighs in at around 15lbs!  No wonder my shoulders hurt so!!!

This caught my eye, I love to see interesting, gnarly pieces of wood.

Now, if anyone can shed light on the name of this, please share.  Google Lens came up with diddly squat on it.  It's smaller than, but closely resembles the flower of Herb Robert, although the leaf is very different.  It is all along the hedges, but looks cultivated not wild.

Well, I had lots more to say, but I am so tired I am going to try and get forty winks.  Thank you all for your support, and if any of the Anonymous donators are reading this, whoever you are, Thank You!

I wonder where I'll wander tomorrow?

Until then
Debbie xx 💙🌷💙

SUPPORT HERE ~ THANK YOU

Just Another Manic Monday

Hello Friends!

Well, not really a Manic Monday, more of a Frantic Friday!  For the first day of the Walk 100 Miles For Parkinson's challenge, it could not have been busier in distracting and pulling me in way too many directions for someone who is doing their best to be coping with the limitations of this condition.

So, I have to start with yesterday, Friday, and the first day of the challenge.  And what a challenge it is turning out to be! My morning care call is for 8:00 a.m. so I can't go before that {time was when I would have already done a couple of miles before breakfast, especially during the lighter mornings of summer} They are usually gone by about 8:45, but then I'm in my "eating hour" as I call the times before and after my Madopar tablets, which must be taken on an empty stomach, and these are five times a day, so it's a case of watching the clock and being diligent, otherwise the medicine doesn't absorb into the blood stream.  

I had my breakfast in good time and off I went, completing my first lap in good time, although by the time I reached the post box, I was already asking myself, "Who's bright idea was this?"  

At this point, I kept telling myself, just 20 more steps and it's all on the flat and downhill from here . . .

Not doing so good on the photo stakes though!  I did take a couple, but nothing exciting.

So, not too bad a start, and I was feeling pretty good, but that was all about to go south.  The day before I had a builder in to finish off a job started by another builder, and I came home to find the work already falling down!!  He's going off on holiday for three weeks!   So, he had to come back asap to sort it out, leaving me with a fine mess to clean up again.  

It was then discovered that the County Council hadn't emptied my Garden Waste Bin on Thursday.  I phoned, and these days you can only leave a message for the department, they won't put you straight through.  Anyway, there was a message on my account to say it hadn't been emptied as it was too heavy to move, stuffed to overflowing, and full of stuff that wasn't allowed, such as rubble, earth and stone!  It is actually about 2/3 full and is only grass clippings and a few weeds.

Eventually, after three calls with three hours on hold {yes, that's how long it takes to be answered} I was told it was the grass cuttings had compacted down and wouldn't come out of the bin.  Whatever!  By this time I am too shattered to talk.  I just had to accept it as I was all out of fight!

Friday night was definitely the kind of night I longed for a bath to soak in for an hour.  Oh, to have a nice, deep tub of hot, lavender scented bubbly water . . . 

Moving swiftly onwards to this morning.  I was dragging! Yesterday, I'd missed my naps, and this morning I was paying.  Still, I managed to haul myself out of the door, and taking a different route, set off, one foot after the other, one step at a time.  This time I chose one of the local Bridle Paths.  A few years ago, these paths were all levelled out and tarmacked to make them safer for walkers and wheelchair users alike.  It made things so much easier . . . until I was back on the road! 

Coming off the Bridle Path on to the footpath alongside the community hut, I nearly went head over heels with that nasty drop at the far end.  It's a lot nastier than it looks from here.  It really needs a ramp. 

This is the pavement I had to take home.  It lists at a jaunty angle, and kept pulling my walker to the right.  I felt very off balance and ended up walking on the road.  

 Other than the unpredictable surfaces, I had a good walk to enjoy, and saw lots of Pennywort, one of my favourite native plants.

When I returned home, I found more donations in my letterbox, another £110.00. I am so humbled by the generosity of everyone!

Until next time

Debbie xx

Two More Sleeps

💙🌷💙 For those of you who don't know, I am trying to sign off my posts, messages etc with blue hearts because Parkinson's UK logo is blue, and the tulip is the flower of Parkinson's.

Hello Friends! 

Well, at the time of writing this, it's just two more sleeps until the Walk for Parkinson's challenge begins.  Thank you to everyone who has supported me!  I am truly humbled and somewhat overwhelmed by the generosity of my supporters.  For all the enquiries I've had from overseas friends as to how they can donate, I am working on it. The person in charge of fundraising in Wales is setting me up with the necessary information, which I will pass on to individuals as soon as it is with me.  No mad panic, as the donations can still be made until the beginning of July.

I will be posting daily updates to monitor my progress.  I do hope you will follow along, although I don't expect you to reply to each entry, but occasional words of encouragement will be appreciated!

At the time of writing, I have raised just over £300 including Gift Aid declarations. Immense! as Nessa would say.

Support doesn't only come in the form of financial donations, but let's be honest, that is primarily what FUNDRAISING is meant to achieve, but kind words, following me, sharing my cause, an encouraging message {when the "WHAT HAVE I DONE?! kicks in}, even someone coming over to help me on with my coat {because with Parkinson's you need help to do something as simple as that} or hold the outer door open to make getting outside with my rollator easier, especially when the wind is trying to turn me into a squishy filling in the door jam! Anyone who will join me on the daily walks to hand out leaflets, or distribute posters to help raise awareness beforehand, that's all SUPPORT.

I now have just over 24 hours to decide about the Wild Welsh Herbal Medicine course.  My classic, indecisive, Libran petticoats are showing!  Here are my next two batches of herbal vinegar medicine, the much maligned by many Dant y Llew {Dandelion} and the biting Danadl Poethion {Stinging Nettle}

I have a friend who has just completed the first year on the Face to Face format and she cannot sing it's praises enough! She is all in for the second year.  I missed signing up for the F2F for this year, but another friend is signed up for that, and she is eager for me to join her as we can work together.  The online format is the same as the Face to Face, except the F2F get to meet up for four weekends over the year at Salena's small holding.  Oh, the joy of indecision!

Well, tomorrow will be a busy day.  My handyman, Darryl, is here at 9:00 a.m. to give me quotes for a whole heap of those small jobs that I can no longer do for myself, and a few others besides.  Then I have to start making copies of the QR code for my fundraising account, and I will distribute those to my neighbours, and I have some phone calls to make too.  I also have to make a temporary bunting for my rollator because I'm not just walking, I am promoting Parkinson's UK and the importance of getting more people to recognise how horrible and how seriously prevalent this condition is.

On that note, I'm off to do dishes, sort the laundry, and get the recycling that was missed ready just inside the door so that my morning call carer can help me put it out. She will hang the laundry and hopefully it will bit rain, so when my p.m. PA arrives, she can bring it in for me.

Speaking of rain . . . you might have guessed it, that after a lovely, long spell of dry weather, the rain is coming in on Friday. Isn't there something happening on Friday?  Oh! Yes, ha! my walking challenge begins.  Well, wouldn't ya know it!  Not to mention it's a Bank Holiday, so as sure as Ben Hur will be on telly, it will rain.

Until Friday!!!

Debbie xx  💙🌷💙

Updates and A Challenge for May

Hello Friends!

I haven't been doing so good lately, I have been sleeping a lot, about 18+ hours a day; my medical treatment, support, and medication all seem to be in limbo after there was such a promising shift in December.  I am now in between care teams, and it's not helped by the Parkinson's Nurses team now back to one part time nurse for the next two months.  Enough!

Okay, down to business before I start chatting away.  I am begging for money!  Well, donations, for Parkinson's UK.  May is their Walk For Parkinson's 100 Mile Challenge and, although I will not be able to even think about the 100 miles over 31 days in my current condition, I have done what others in my situation are doing, which is adjusting the challenge to something achievable.  In my case, I originally said I would aim for 100 laps of my driveway, but I'm now thinking to up the ante on that. Anyway, I've signed up and will be doing this every day throughout May . . . and I am hoping some of you will support me with a donation to Parkinson's UK by way of my funding page which is 

HERE

If you can, please give whatever you can.  Every penny is so important.  Thank you.

I am actually sitting here sobbing at the generosity I have already been shown by several of my Facebook friends.  I have in just over an hour raised over half my original target!  Of course, don't forget to sign Gift Aid if you are able, because that gives an extra 25% to Parkinson's UK and not to the Taxman!!

Now on to other news.

I have started selling my effects, possessions, clothing, knicknacks, bits 'n' bobs, and more, on Vinted. I was surprised at how easy it was to set up the account, and how easy it is to manage.  All I have to do is take photos, write a bit of a blurb {as much or as little as I want} hit "post" and sit back and wait, and hope someone likes something and buys it.  The buyer pays postage, sends me a label for the carrier, and off it goes.  Within 10 days of accepting an offer I have the money in my account!  Easy peasy, lemon squeezy!  The mad thing is, I was going to give most of it away either to the charidee shops, or on the "Donate It, Don't Dump It" local Facebook page, and now I've already sold over £150 worth of donatable items.  So, money for my chosen charities and for me!!!

I also have treated myself to a short, online introductory, taster course in making herbal medicine, the Wild Welsh Herbal Medicine Challenge.  It was only three x 1hour Zoom sessions, a taster, for £29.00 and I would dearly love to take up the year long course that follows on, and is intensive but it is £1400.00 and that is a lot of money just for something I am interested in and does not result in a qualification at the end of it.  However, I have one friend who is coming to the end of her first year and is so happy she is going to sign up for the second year; I have another friend who is signed up to the "in person" option whereby the group for that option meets up four times a year in Caerfyrddin, and 12 times a year on Zoom.  It is a big decision, because with Parkinson's you never know what is coming, when it is coming, or how bad it will be, so a long term, considered purchase might not be a good idea.  On the other hand, it is something I have always had an interest in.  My mother always called me her little witch.  Other mothers had princesses, mine had the witch!  LOL

Here are some videos I made of me making the first stages of my first Wild Welsh Herbal Medicine.  It is Rhosmari {Rosemary}macerated in Organic, Raw, Unpasteurised Apple Cider Vinegar with Mother.

and here are a few photos of the same, and other things

There be DRAGONS!  And, let them lie, for you are crunchy and taste good with ketchup . . . 

Well, my friends, it is now the next day and I still haven't eaten since breakfast yesterday morning, so I'm off now for a little midnight snack!  

I am utterly overwhelmed at the generosity of people! It is not yet four hours since I signed up for the challenge, and I am already just £7.00 short of my original target!  I am humbled, and I still have my neighbours and family who are not on Facebook or Instagram to "hit" too!  I do hope I can do well. I will be posting regular updates.

Until next time

Debbie xx

EDITING to say I'm over the moon to have just found out that my favourite garden designer, Arit Andersen, is designing a garden for Parkinson's UK at RHS Chelsea Flower Show in May!!!

Everyone In Tears

Hello Friends!

Just a quick note.  Did you see Britain's Got Talent on Saturday?  Have you seen the Hawkstone Farmer's Choir?  I do hope so!  They were utterly brilliant, and Amanda Holden gave them a well-deserved Golden Buzzer, advancing them straight into the semifinals in May.

BGT Official YT

The husband of my childhood friend and neighbour {we used to climb over the wall into each other's gardens} is one of the 32 strong choir brought together by Jeremy Clarkson to promote his Hawkstone lager and brewery made with wheat grown in his nearby farm, Diddly Squat.  Short story, the choir was formed to promote the beer with this now banned advert.  Someone, somewhere, picked up on the story and the next thing they are being filmed and auditioned for BGT!  

Here's Hugh's story:  Western Telegraph Article

We're all hoping the rest will be history and we'll see them through to winning!  It can't be easy being part of a choir where the members all have day jobs that can be up to 16 hours a day, seven days a week, 365 days a year!  When you live near to each other, practicing won't be easy with those sorts of hours, but my goodness, these farmers live across the whole of the United Kingdom!

Amanda Holden was sobbing, KSI was in awe, the audience was crying, I was in tears!  I don't think there was a dry eye anywhere.  Everyone I've spoken to was crying!

These are the people who work ungodly hours in often the most atrocious weather conditions, be it winter storms or summer heatwaves for very little thanks.  There is a high suicide rate amongst their community.  They get paid very little for very hard work.  Yet they turn up every day of the year, including Christmas, because cows will always need milking, livestock must always be fed.  If they don't do this, then we don't get food on our tables.

It's time to make sure we support BRITISH farmers by buying BRITISH produce!  And give a great big THANK YOU to these unsung heroes of our communities.

Until next time

Debbie xx

Let's Pour Salt Into The Wound, Shall We?

Hello Friends!

I am speechless!  Well, maybe not, because I am incandescently angry and, like many others in my county, up in arms over developments this past week.

I am going to give you a series of links which you can read if you want a fuller version, but the bottom line is the powers that be have decided to make major cut backs in funding and reduction of services to four of the main/only hospitals that service west Wales and the Hywel Dda Health Authority, including Emergency Surgery at Withybush Hospital.

The four main hospitals impacted by these decisions are Withybush, Bronglais, Morriston, and Prince Phillip.

Here are three short articles from the local newspaper that outline the situation and impact, in order of date of publication:

Withybush Hospital future in balance ahead of key meeting | Western Telegraph

Withybush Hospital to lose emergency general surgery | Western Telegraph

Anger at Pembrokeshire Withybush hospital decision | Western Telegraph

Understandably, there is public outrage, and once again the residents of Pembrokeshire take to all the platforms available to them to protest and fight to keep our hospital services.  In the meantime, YOU can help by signing the petition, below.  I have checked with the organisers and it is not location specific so yes, you can sign it and share it because EVERY SINGLE SIGNATURE COUNTS!  And, it could affect you, too, should you come to the area on holiday and need hospital treatment.

Urgent Pembrokeshire Healthcare & Resident Safety - Withybush Hospital & Health Board Intervention - Petitions

Not wanting to go down the route of bad puns, the following news today has just poured salt into the wound and added insult to injury when our First Minister, Eluned Morgan, visited Royal Alexandra in Rhyl to announce a £33 million investment in Minor Injuries, Radiology, NHS Dentistry, and Rehabilitation for the Royal Alexandra Hospital.

Eluned Morgan in Rhyl

I knew both her parents.  I served on several committees with her mother, and I cannot help wondering how they would feel about the way their daughter is behaving towards the place they called home. 

PLEASE, PLEASE, PLEASE SIGN THE PETITION AND SHARE IT.

Preparing For The Flack

Hello Friends!

As promised, this the account of my recent 'consultation' with my Parkinson's PGMP. For abbreviations used, please see box in sidebar.

{back story}

•      diagnosed with Parkinson's Sept 21
•       told I would be seen F2F every six months
•      there would be regular contact with a PN.
•     it is now 30 calendar months since my last F2F
•    appointments constantly rescheduled
•    I was last seen by the PGMP F2F in Sept 23
•   All appointments since have either been cancelled or happened over the phone
•  I have involved the help of my local Senedd AM as to why provision of services is so poor in my area

Telephone consultations are not productive for assessing the patient's current level of progression because you need to see the individual to assess physical deterioration levels.

My last appointment in Dec 2025 was cancelled with less than 24 hours’ notice and rescheduled for last Tuesday 3^rd Feb at 4:00 PM. It was at this time I contacted my Senedd AM

All consultations begin with 10 minutes spent refreshing the PGMP with my medical history and medication regime.  He does not review notes ahead of time. Telephone consultations are generally limited to 30 minutes but Tuesdays was less than 25 minutes.

I had prepared notes to help me, but I was not asked any questions regarding my current level, nor given the opportunity to ask questions.

The PGMP is hell bent that I must move into either an assisted living facility or care home as soon as possible. This from a “professional” who has not seen me in person for more than two and a half years, and has no idea how my symptoms are progressing, or what my needs are. 

His argument is that I live on my own, and because I get no support from family, community, neighbours or friends, no one checks in on me, no one visits or telephones me, and {according to him} I have lost confidence and do not attend any community events to socialize, that by moving I will make new friends, regain my confidence and begin “socializing” with said new friends.  

He is blinkered and determined to the point that I no longer wish to speak with him.  Not that I can speak to him, for he is so fixated he does not allow me to speak or say why I disagree.

Here’s why I do not want to move:

1.    I am perfectly happy where I am.  

2.    My confidence is not missing!

3.    I do not want to make new friends because:

a.   I don’t like big groups

b.   I prefer my own company to a room full of people who are not my Tribe.

c.   I am not a social butterfly

d.   I have physical limitations that add to my discomfort when in social situations

4.    He has not considered the negative impact that moving would have on my wellbeing, especially the stress involved.

5.    My local council will do everything in their power to keep individuals living in their own home by providing support as needed to facilitate independent living.

I am not stupid, I know that at some point in the future assisted living or a care home will be a necessity, but when I am ready I will know and it will be my decision.

He does not intend to adjust my medication at this time to alleviate my tremors. I am expected to tolerate them.  He did not offer an acceptable reason for this, so I can only assume it is punishment for noncompliance over moving, or because I have involved my Senedd Assembly Minister in my concerns, especially given what followed next.

He actually referred to my age, pointing out that I am old {I am 68} and should accept this!!!! WTH?????? Bang out of order, inappropriate ageism!!!  His final point was that if I feel so strongly, then perhaps I should involve my Member of Parliament. My thoughts are that he is annoyed with me and this is his veiled attempt of letting me know his disapproval. I don't think he was expecting me to reply as I did when I said “no need to worry about that I've already asked my assembly minister to look into things for me”

I really do feel as if I am being punished and going to be made to suffer.

I have spent a lot of time contemplating the best way forward, and by starting to collate advice.  

I cannot be involuntarily forced into care as long as I have my “mental capacity”. 

I have requested the correct protocols for

1.    obtaining full transcripts of my records since Sept 2021, when I was first diagnosed

2.    requesting a second opinion

So there you have it.  I wish it was better news but it is what it is and I must deal with it or give in.  it isn’t going to be easy, I am being punished for involving my AM, and right now I have a PGMP who is determined to make me stressed when that is the last thing I need.

To end on a happy note, there was a tap at the door yesterday afternoon and I opened the door to find the local courier with a parcel for me, but I was not expecting anything.  Imagine my immense joy and delight to find that my dear cousin had sent me flowers internationally!  Such a thoughtful and kind thing to do!  Aren't they beautiful?

Until next time

Debbie xx