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   

BANISHMENT Repealed!

Hello Friends!

With a huge sigh of relief I can tell you that today my Banishment is repealed and I can now use Facebook once more.

I am speechless, however, to read in the screen capture that they admit to their technology making the mistake!!!  Wonders will never cease!

I am not sure whether it was the help of a very kind relative of a friend of mine in Texas who works for META or if it was just pure luck that it happened today but I'm back. I will not pretend that I really thought my time on Facebook was done. It is worrying though that this has made me aware that so many organisations these days rely on their social media platforms to disseminate information.

Top of this list is the local doctor’s surgery who now only uses Facebook to reach out to patients registered at the surgery for community events such as the annual flu inoculations. No doubt many of you will recall over a year ago when the local surgery closed and amalgamated with the one in an adjacent village. That surgery would contact the patients by telephone to notify them that the flu inoculations were now being administered and would they like to book their appointment. Every eligible patient was contacted by this way. The new practise however puts an announcement up on Facebook to let everybody know that the flu injections clinic will be happening soon if you would like an appointment, it is your responsibility to make it, and would you please let all your friends and family who are not on Facebook know.

Personally, I think this method is appalling. You cannot rely on word of mouth to spread information about something as important as the annual flu inoculations. Stepping off soapbox before I need a tetanus injection because I'm getting splinters in my feet.

I have had my doctor's appointment, the one that has been repeatedly cancelled and rescheduled over many months this past Tuesday. In the next day or so I will be putting up an entry dedicated purely to that meeting which I will tease you by saying it was interesting to say the least.

In the meantime, I've got loads of Facebook notifications to sort through I honestly can't see how I have got so many when I haven't been on there for a fortnight still I'd better wade my way through in case there's something I need to see.

Until next time
Debbie xx

Adrift on the Sea of Banishment . . .

Hello Friends!

I am still adrift on what I am now {as a Traitor Superfan} calling my Sea of Banishment . . .

First, though, let's talk Parkinson's.  At the beginning of February, I have an appointment with my Parkinson's General Medicine Practitioner {from now on I shall be referring to him as my PGMP because he is not a specialist, nor is he a neurologist.  He's a practitioner of general medicine who happens to have a keen interest {sarcastically, I call this a hobby} in Parkinson's.  

Backstory synopsis: for those of you who don't know, I was diagnosed in Sept 2021 and was told I would be seen by the PGMP every six months face-to-face {F2F} with unlimited access to a Parkinson's Nurse {PN} between appointments.  I have been badly failed and after a series of rescheduled appointments, I have now not been seen F2F for 30 months.  

I received a standard hospital appointment letter with the details of my appointment including all the usual instructions to report to reception, to bring the letter, and to bring my meds with me etc.  However, a chance meeting with a PN two weeks ago brought it to my attention that this forthcoming meeting is not F2F but a Zoom meeting!!!   There is NO INDICATION whatsoever, not a dicky bird, on the letter that this is anything other than IN PERSON!!!

Our NHS is in bad enough shape without the potential waste of an appointment made in error by an administrative assistant.  Had this not been discovered, I would have paid for transport to and from the hospital, arriving for a non existent appointment while the PGMP was attempting to reach me by Zoom. 

For two and a half years, I have been self-treating and have deteriorated in many ways since my last F2F that I no longer know what symptoms are Parkinson’s and what might or might not be something else.

I think this Zoom appointment is scheduled to be no more than 30 minutes. That’s not a lot of time to cover everything that needs to be addressed after 30 months. If this appointment is anything like previous ones, ten minutes will be wasted by me having to clarify and repeat my medical history pre Parkinson’s, my current medication regime, and my medical history since my last appointment. This, imo, are things he should bring himself up to speed on BEFORE he phones me.

I have drawn up a spreadsheet of symptoms and my interpretation of how bad/good/do not have on a scale of 1 to 10 as pertains to me and also prepared a document of bullet points that I wish to cover and have emailed it ahead.

I think, I hope I’ve covered everything I want to address, but am going to be seriously {mad as a rabid dog} assertive if I do not get enough airtime. I think he will be mad at me because in December I reported the inadequacies of my region to my Senedd representative who is fully on board with me.

Update on the BANISHMENT . . . yes, I am a Traitors Superfan . . . from META platforms.  I have, as of the time of typing this, heard nothing.  Did I expect to? {rhetorical question}.  The message that I shared on my last blog entry from my Facebook page remains the same.  I have, however, found out that while one of my Instagram profiles is deleted, the other one is only partially so, which is bizarre.  I can post photos and comment on the photos of others, but not everyone can see or comment on mine, while some can, and some followers/friends can Private Message me, but others can't.  The situation keeps on getting weirder and weirder.

I spent ages last evening faffing about on Microsoft Designer learning how to use it {it comes with my Microsoft Office monthly subscription package} and made the following poster to draw attention to my plight on Instagram. 

{I confess that maybe I had a little bit too much fun playing with this programme}

I think maybe I should make another one asking people to disseminate my plight on their own platforms so that people will know why I've suddenly disappeared, er been BANISHED . . .

In the meanwhile, I am making an altered book.

I purchased this lovely Almanac in 2019 and it served me well, but being an Almanac, it is full of date sensitive material which after 2019 is of little use other than reference. So, I am working through it, keeping the remaining useable information pages intact and creating art in various forms on the other pages.  I will share these with you from time to time.  Here are two in progress . . . 

I hope that I will soon have better news for you about my Banishment.

Until next time

Debbie xx