BANISHMENT Repealed!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With a huge sigh of relief I can tell you that today my Banishment is repealed and I can now use Facebook once more.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

Humanity, Common Sense and Artificial UNintelligence

Hello Friends!

Just to let those of you who are friends with me on Facebook and/or follow me on Instagram you may find yourselves a friend or follower down because META in their infinite wisdom decided to disable my account without telling me why.

Yesterday evening I was online with my Facebook tab open and the next thing the page flickered and suddenly I was looking at a blank page with a warning triangle and a message informing me that I have violated their T’s&C’s.

Of course, I have not been told what I have done, just that I have done it, whatever "it" is, and that "it" has been decided by AI technology. 

Well, thank you very much META. This is the point where I have to step back and remember to breathe.  Suspending me for breaking rules is one thing but suspending me and not telling me what it is that I have done so that I can defend myself is pathetic, ridiculous, and unfair. This is artificial intelligence, {or should that be unintelligence} my friends.

I struggled with page after page of instructions on how to submit an appeal, then struggled filling out forms to submit said appeal only to be told that there is just one shot at this and if unsuccessful there is no right to appeal said decision.  Either it will be successful or it won't and if the latter, then they're going to permanently delete all my profiles.

Aside from not knowing what I have done wrong, the most irritating thing is that not only has this decision been made by a non-human, but the appeal is also conducted by AI technology or, possibly by a human being. I honestly think if a human being had assessed whatever is causing the problem we wouldn't be in this situation now. To think that my future on these two social media platforms is being decided by an obviously inferior entity beggars belief. 

FYI: I have two Facebook profiles, one of which is obsolete and has not been used for 12 years, and my current one. I keep the old one as a backup and my current one is to keep in touch with local organisations for information, e.g. the local City Council, the County Council, the GP's surgery, what's on in my locality, and so on. I also keep in touch with several Parkinson's organisations and forums. All of this is vital to me, providing me with information and keeping me updated on news regarding Parkinson's.

So thanks a bunch META for being such absolute petty Jobsworths and in making the life of at least one disabled person extremely difficult. Goodness only knows how many others you've put in this situation.  What happened to humanity and common sense?

It would be courteous if they at least allowed me to defend myself and send an e-mail, but no, we the users of these platforms are so unimportant that they won't even let us speak to someone.  This my friends is the way forward. I'm not going to be allowed to have any say in the matter.

My Instagram profiles are countrywaysandcottagedays and WelshDebsArt.  I have not been able to confirm what has happened to WelshDebsArt, but I can confirm that countrywaysandcottagedays has been deleted. I can also confirm that both Facebook profiles have been deleted as I have had someone check for me and they are no longer visible.

Since composing the above, I have discovered that this has something to do with my "Business account" which is interesting as I do not have a business account!!!

Until next time

Debbie xx

Can You Keep A Secret?

Hello Friends!

I suppose it was presumptuous of me to hope that the pre~Christmas events would continue with their momentum, and true to form things have come to a grinding halt. I feel as if I'm almost back at Square One. I am not surprised, but at least some people have sat up and paid a bit of attention and I do now have a useful list of contacts and telephone numbers who I can hopefully turn to in the future. No point in dwelling on it, there are others far worse off than I am so moving swiftly on...

On January 31st a DN came to the house to take blood. She did not know who had requested it, but I do know three or four of the people who saw me before Christmas had suggested I get my vitamin B complex tested. The results were back on 2nd January and I was told I’d get the results the following Monday, but Monday came and went with no phone call, then today over a week later I finally got them. My vitamin B complex is very low and I am anaemic so, heigh ho! more tests to follow. Oh! joy bliss rapture!  I have had a predisposition ever since I was a child to being anaemic, when the doctor prescribed that I take a glass of Mackeson stout with warm milk as a tonic. You certainly wouldn't find that prescribed for anyone today, much less a child, would you! In fact the only time I have not been anaemic is when I was taking Centrum multivitamins in the 1980s and 90s. 

Have you seen the new comedy show starring Dawn French called Can You Keep A Secret? It’s one of the funniest comedies I’ve seen in a very long time. It is about a woman whose husband has Parkinson's and through an error of judgement overdoses on his medication and is pronounced dead by the local doctor. Of course, he is not dead but the insurance policy gets cashed in, and of course I don't have to tell you the way this is going to pan out. I have laughed out loud while binge watching it last weekend on iPlayer.  I don’t know why Parkinson’s was the medical condition selected but I am glad it was and sincerely hope and pray that it brings some much needed publicity to the illness.

Can You Keep A Secret?

Well, I can’t say I’m looking forward to more tests, but if they can do anything to help me regain some of my lost energy and mojo, I will go along with it.  As of today, I had already started to work on my diet and the doctor who called seemed pleased with what I am doing.  I have bought a new Ninja nutribullet and stocked up my fridge with a good variety of nutrient dense low fat foods such as spinach, kale, tofu, oat milk, a variety of fruit juices, apples, pears, Bananas, kefir yoghurt, frozen berries and more. It is my intention to have a out based fruit smoothie for my breakfast, an egg or tofu based lunchtime meal{I do like avocado and also samphire} And then I'm going to make a homemade low salt soup for my supper. I'm cutting out all sweets and cakes etc and taking my diet back to what it used to be. Of course one of the desired side effects should be that I will also ditch some of this weight that I have gained over the past three years as well as helping me to be better prepared to cope with the Parkinson's. I have also been researching foods that are higher in dopamine than others so I will be incorporating those as well.

Smashed Avocado, Butterbean and Spring Onion Tacos

I hope the weather improves for all of us and I'm looking forward to some better days in the near future that with my increasing energy I'll be able to get out and start enjoying the countryside a little bit again.

Until next time

Debbie  xx

Treat The Cause, Not The Symptoms

Hello Friends!

Thank you for all your kind comments and support {to those of you who wrote the nasty cowardly and anonymous ones, the spam ones never get published, so save your negative energy for someone who gives a hoot}

As you can imagine, I am doing my best to slow the progress of the Parkinson's for as long as I can, so this means lots of looking and searching through tinterweb, mainly trying to extrapolate truth from AI fiction.  It is not easy, but I do my best, and this is not a Pity Party, it is me sharing what is happening to me, and many thousands of others, and how I am doing what I can to improve my quality of life, and to cope with the hand I have been dealt, in the hope that it might help someone else.  But, please, remember, I am not a medical practitioner, and therefore cannot advise you on anything.  There are a lot of forums online, and the majority of people on there are genuine, and we share our experiences with each other just in case we find something that, if nothing else, makes life a little more comfortable and bearable.

One thing you see a lot of on these forums, where people are sharing their own situations, is the sheer volume of patients who sleep for in excess of 15 to 18 hours a day.  I am one of them.  I can sit down to watch a programme and suddenly wake up two or three hours later {in the middle of the day} I have addressed this with my Parkinson's doctor and nurse, as well as my GP.  I have been told it's just one of those things that happens when you have Parkinson's.  Live with it.  Er, well, no, thank you, I would prefer to try and find out if there is anything I can do to turn this around, specifically attack this at the cause and not simply treat the symptoms.  I have long been an advocate of treating the cause, not the symptoms, yet most GP's treat symptoms.  Maybe if they treat the cause they'd put themselves out of business?  Well, with no cure for Parkinson's {yet} they don't have to worry about that!  

I started looking at a rumor that was circulating about PD and protein consumption.

Back in the summer of 2025, I kept seeing questions regarding {a necessary part of a healthy balanced diet} and its effect on the efficacy of the "Gold Standard" treatment for PD which is currently Madopar.  I asked questions but didn't find any clear or useful answers.  I put in a self-referral through my surgery to be seen by a dietician, in the hopes of finding something useable.  {prepare to giggle} It became a classic example of Chinese Whispers, sending three and fourpence, we're going to a dance . . . and a fortnight after my request was processed, I received a visit from a very nice lady who had been sent by one of those PAVS or Hub type organisations, who had, in true Chinese Whispers style, received a message that there was a lady who needed advice and information on how to cook.  I did get a free pen out of it, but that was all I got.

Since then, I have spoken to the new PN in my region, and she has clarified a great deal on this matter.  We all know protein is vitally important to metabolism and growth, so the earlier information seemed counterproductive, and she confirmed it is a myth!  Chinese Whispers had diluted the question and answer resulting in the "don't eat protein" advice. The correct information is to eat a proper, balanced diet to include all food groups unless there is a specific reason not to.  However, the protein consumed by Parkinson's patients should be high-quality, low-fat, so, for example, fish, chicken, lean meat etc and avoid high fat, low quality protein.  Well, that's fairly sensible, and is what most people should be aiming for anyway.  Nothing to see there!  However, Madopar should be taken on an empty stomach to maximise absorption, and it should not be taken at all with dairy products such as cheese and full fat cream as the high fat dairy component will seriously effect absorption. There we have it! Do not take Madopar within an hour of eating cheese!  So, if this is all correct I will be adjusting the amount of cheese, type of cheese, and when I eat cheese.

Now, let's go take a look at the excessive sleeping issue.

I am sleeping throughout the day, and I am also extremely lethargic, I have no interest in anything, and I've gone past the point of caring. This is something that most people on the Parkinson forums are complaining about. So what can be done when the medical profession treats the symptoms and not causes.

Let's look at this list as it pertains to me:

1.       I am not eating properly; therefore I am not receiving good nutrition which is necessary for healthy sleeping patterns as well as many other things.

2.      When I do it eat, it is highly processed junk food, crisps, chocolate, cheese, etc.  None of this provides good nutrition and the high sugar levels in my diet will contribute to a lack of energy/ energy spikes etc

3.      My vitamin B complex, folic acid, haemoglobin, magnesium etc  are all very low and this is known to affect energy levels, mood and so on

4.      My blood pressure is dangerously low, and that in itself will cause lethargy, tiredness, sleepiness etc

5.      Nearly every one of the tablets I am taking have drowsiness and Do Not Drive/Operate Machinery warnings in their contraindication sheets

So, just a cursory look and there are a lot of potential contributing factors.  I'm not saying that lethargy and sleeping a lot isn't part of the Parkinson's because with diminished dopamine levels you do get sleepy, but with such a combination, a cocktail of symptoms and contributing factors, if addressing one, some, or all of these issues can ease the sleepiness by even a small amount it would be a great help. 

Starting this week, I am going to tackle this list.  I will be following up on getting blood tests for vitamin and mineral levels as soon as one can be arranged.  I have already removed all junk food from my shopping list!  Cheese is cut to a minimum.

In the meantime, we are covered in a blanket of snow, it is bitterly cold, and we shall see where this goes next!

Until next time,

Debbie xx

My Own Christmas Miracle

Hello Friends!

I hope you all have had a good Christmas without dramas or chaos, and are now starting to relax after all the whoopla and merriment of the season.

So much has happened since my last two entries, HERE and HERE, that I scarcely know where to begin.  Maybe I should suggest getting yourself a lovely, big mug of tea and another slice of Christmas cake? Settle in your comfy chair and pay attention because I know I will begin to ramble more than I usually manage!  This is your warning; a long and detailed story follows . . . 

Let's start at the very beginning, a very good place to start . . . 

Where was I?  Ah, yes, I had been in touch with my Assembly Minister at Y Senedd and received a very prompt and favourable response from him. He offers what seems to be a genuine concern and exhibits an interest in, and willingness to investigate, the frightening shortfall in services in my region. I am in process of furnishing him with more information and the necessary permissions to allow him to investigate my medical records, files etc before progressing on to the situation as a whole in the area.  This will take time, and I shall report back in due course.  I am hopeful.

Then, there was the incident on 14th December when I injured my hip/leg/back.  I must clarify and apologise for the confusion.  I did have an accident in which I was hurt, BUT it was NOT a fall.  As many of you know, I have ongoing issues with my spine for many years with bone spurs which mean I have a predisposition to flair ups with agonising and immobilizing pain.  Sometimes, despite the precautions I take to prevent an occurrence, something will happen and Flash Bang Wallop I am unable to move and in  utter  agony.

Here's how it all began, what happened next, and where I am at now . . . 

I had been sitting at my table late into the night working on a small project which had taken all my attention resulting in me sitting in one awkward position for too long.  When I came to move, unaware of how much time I had spent in this awkward situation, I moved far too quickly, resulting in a jolt to my hip and thigh which was enough to do whatever it is that happens to make a flare up happen.  Immediately, I was in agony of pain as bone hit against bone, my entire leg felt as if it was being screwed in a vice to immobilize it, and the pain is instantly excruciating.  It's that quick and there is nothing that can be done.

I managed to seat myself after a fashion in my riser recliner and spent a long night in pain, unable to move or do anything to alleviate my distress.  At 8:00 a.m. my carer arrived and I was already on the phone to the doctor requesting a same day house visit as I knew I would not be able to get washed and dressed, never mind negotiate getting into a vehicle to travel to an appointment in the surgery.  What I should have done was hit my personal alarm and summoned an ambulance, but I knew they would take me into hospital where I might be faced with a 30 hour wait, or longer, on one of those awful plastic bucket seats in the main waiting area, while being exposed to all kinds of winter respiratory viruses, 'flu and Covid, all of which are rife in the community at present.

Shortly after midday the phone rang and it was a doctor from the practice refusing me a home visit and obviously totally unaware of my pre existing condition of Parkinson's and rather dismissively told me to get someone to go to the pharmacy to buy me a tube of Ibuprofen gel, use it for two or three days and if I wasn't any better by Thursday to ring for an appointment {bearing in mind that it can take up to three weeks to get an appointment, and with Christmas thrown into the mix, I could well end up in the middle of January before being seen}  I was despondent.  It is hard enough to ask a neighbour for help as it is, and I am lucky that I do have two neighbours who will help, but I don't like keeping on asking, especially at Christmas when they are busy. This reply from a GP who is supposed to help me was demoralising and humiliating, I felt worthless.

This is the current state of our NHS.  Go buy a tube of Ibuprofen and self medicate at home.

I struggled.  I was in so much pain I was physically sick, I couldn't eat or drink, and I just sat on my riser recliner or stood in one place leaning on my rollator from Sunday evening to Wednesday afternoon.

On Tuesday morning, my carer came and somehow I struggled to get in the shower, freshen up and get dressed.  Later on Tuesday afternoon, the District Nurse came by to check my skin for sores {due to lack of mobility with Parkinson's and dry skin caused by the medications I must take} and she was shocked when she saw me, and not at all happy when I told her what had been said to me the day before.  

Another painful night spent in the riser recliner.  Wednesday morning dawned, and once more the carer came and went and once again I dozed off in my recliner, but around 10:30 a.m. there was a rap a tap tap at my door which woke me up with a start.   I called out and the door opened and in walked a lady from PARKINSON'S UK to discuss Parkinson's related matters with me.  The appointment had been made about a month earlier, but with all that had been going on I had completely forgotten about it.  She was horrified, and whatever she had come to talk to me about went out the window.  She immediately took charge, and phoned the surgery where she told the receptionist that she was with a client who needed to see a doctor as a matter of urgency, today and with a house call.  No ifs, ands, or buts.  She then spent the next hour asking me lots of questions and making even more phone calls.  She phoned the County Council, Adult Social Services, Parkinson's UK, the Parkinson's nurse at the hospital, Physiotherapists, Occupational Therapists, Dietician, and many, many more.  When a call went to voice mail, she left messages expecting immediate replies ASAP.  Her phone was on fire! She was a cage rattler and was not going to leave any stone unturned in getting results.  After she left, with a firm promise to be in touch very soon, and coming to see me in January to do what we should have done that morning, I had an immense sense of relief that finally, at long last, after five gruelling years of banging my head against a brick wall but not getting anywhere, things might be moving in my favour!!!

I never in a month of Sundays expected things to start moving at the speed of light but move at the speed of light they did!  Given that all this was kicking off just days before Christmas, I think I have witnessed my own version of a Christmas Miracle.

One hour after she left, a doctor from the practice was at my door, very concerned. He really wanted to send me in to hospital to be admitted for observations and tests, but I declined due to the high number of cases of contagious disease and viruses circulating.  We agreed to put me on a course of pain relief {morphine}, anti inflammatories, and steroids for 10 days, and outpatient scans to be scheduled for January.  However, if my condition deteriorates, I am to present in A&E.  On Thursday morning, my phone did not stop ringing as department after department got in touch to say I'd been referred and that they would be back in touch immediately after the Christmas break upon returning to work in {I assumed after January 6th} the New Year to schedule visits and treatment.  On Thursday afternoon, an Occupational Therapist arrived with a walking frame and other equipment to help me get through the next few weeks.  Later that afternoon, a Parkinson's Nurse based in their London head office phoned, and on Friday morning the phone continued to ring and on Friday afternoon the {new} Parkinson's Nurse from the local hospital came to gather the information she required.  I have to say, she is good, she is very, very good.  It didn't take her long to assess that my BP was dangerously low {80/40} and that, despite a doctor clearing my annual bloods in May as "satisfactory" the levels of folate, Vit B complex, B12 and a few others are either low, too low, or, in the case of my blood sugar, too high.  First thing on Monday morning I had a phone call from my GP telling me to immediately reduce my BP meds and to book an appointment in January for monitoring.  

And still wheels continued to be put in motion.  The senior District Nurse came by on Tuesday and she spent an hour going through my medical history, particularly the most recent five years, and I am now going to have a weekly house call which will include new blood tests and weekly checks on my BP etc. Things eased up on Christmas Eve, but I would not have been surprised had they sent me a turkey dinner on Christmas Day!  Joking aside, things should never have been allowed to reach this parlous state of being, and of course, the one question that is going to take some time to fathom out is . . . why did it take a non Parkinson's related accident to be the catalyst to finally get things moving?

Christmas came and went . . .   

Things continued moving forward this morning. I know I was told appointments would follow, but I really did not expect them to follow immediately after Christmas and before the New Year, but it seems the Occupational Therapist will be with me on Wednesday morning.  She can help me put my Tesco order away!

How fortuitous that the Parkinson's UK Care Worker had booked that appointment for that Wednesday morning, for it is she who ultimately became the catalyst for my Christmas Miracle. Another time, another date, and it could be a very different picture.  As we know, at the moment there is no cure for Parkinson's, just management of symptoms as the long, slow, agonising deterioration advances, but right now I am almost afraid to breathe, because maybe, just maybe, I will now get somewhere and be able to regain a better quality of life while we all wait in hope for advancements in treatment and a possible cure.

Until next time

Debbie {aka Militant Millicent}

p.s. if you stuck with this to the end, thank you so much for reading it!

No Longer in Free Fall

Hello friends!

Thank you all for your support and comments regarding my last entry, on here, on Facebook and elsewhere. Without going into detail, I can tell you I had a very prompt reply from my Assembly Minister who is deeply concerned over the situation, he has asked me a lot of questions, and I feel that he is going to become actively involved in trying to sort things out with our health board.  I will do a more comprehensive update shortly.

In the meantime, last Sunday. I hurt my back quite badly, enough that my doctor wanted to admit me to hospital for a few days.  I declined but right now , due to pain and a morphine induced sog, I don't have the hwyl to say much, but suffice to say, phone calls have been made, referrals and appointments have been made, people have been coming and going all week long with equipment and help, and the irony is not lost on me that it took one very nasty, not Parkinson's related accident to make people sit up and take notice.  I will give a proper update when the morphine sog lifts.  There is much to say!

In the meantime, I hope you all have a lovely Christmas.  I will do my best here, but it will be lonely.  At least there is food in the house, if only I had the appetite to eat it, and there is bound to be something to watch on the telly.

Until next time,
Nadolig Llawen
Happy Christmas