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

Militant Millicent

Hello Friends!

I haven't been on here for a while. I never thought I would hear myself say this, but my interest in social media is beginning to wane rapidly.  I am very tired these days, sleeping around fifteen to eighteen hours a day, and while I do plan to write a catch-up blog, it will have to wait until I have a little more energy than I do at present.

Shalom house hospital closed at the end of October, much to the deep disappointment of many people, in the meantime, I have written a letter that I have sent to my AM at The Senedd. it is not about Shalom but more about the NHS and the lack of, provision of care. for Parkinson's patients in my health authority. I'm attaching, below, a copy that I have redacted for anonymity purposes.

Dear AM 

I write with concern over the situation in X regarding the treatment and facilities available for patients diagnosed with the neurological condition of Parkinson's.

Globally, Parkinson's is one of the fastest growing yet most underfunded and least understood of medical conditions we are faced with today. I understand there are in the region of 500 people in X alone suffering with this horrendous medical condition, myself included, yet the treatment we receive in the county is wholly inadequate on every level.

Parkinson's is very difficult to diagnose, partly because there is no single definitive test that can be given, and partly because the symptoms that manifest are easily confused and mistaken for other medical conditions.  By the time sufficient symptoms manifest to give a diagnosis, the patient may well have had Parkinson’s for several years. Treatment is variable and at times feels experimental.  There is very much a postcode lottery in existence for treatment.

My personal story is that I developed an early indication of the condition in 2015, by way of a frozen shoulder.  I did not develop the usual associated tremor until 2018 by which time I was aware that I was becoming slow in my movement but put it down to exhaustion from being a full-time, sole carer for my late mother who had Alzheimer's. She passed away just before the pandemic, and the arrival of the pandemic was the reason I did not receive my diagnosis until September 2021. Since my diagnosis the care and treatment I have received has been wholly inadequate and falls short of what I was told I should expect.

According to the Parkinson's Society, patients with a diagnosis should be seen every six months by a neurologist, and in between those appointments should have the support of a Parkinson's nurse who will liaise between the patient and various members of the medical provision team, for example the neurologist, physiotherapists, and so on.

My initial appointment was September 2021. I have been seen sporadically at X by Dr X. He is competent, but he is not a neurologist. His title is General Practitioner for the Care of the Elderly and Infirm.  After a series of postponed and rescheduled appointments it has now been 27 months since I was last seen by him in September 2023. To say this is unsatisfactory is an understatement, and while I cannot speak for other patients, I think it is safe to say that I am not the only one experiencing these delays locally.

I have joined two online forums exclusively for patients, their families and care providers and I am learning a lot about the postcode lottery that exists within the United Kingdom.  A recent thread on one forum revealed that there is a qualified neurologist consultant at X*Hospital and they hold a regular clinic at X **hospital.  I have also recently learned that there is now a second part time Parkinson's nurse based at *** X   

Why can’t this neurological consultant come to X, ***or we be sent to X ?**

{* = a hospital 70 miles away)

{** = a hospital 90 miles away}

{*** = local hospital}

I live alone and have no immediate family who can help me and it has taken me in the region of four years to secure a County Council care package through Direct Payments due to, in part, my folder going missing during a turnover of staff.  My care package finally started in May of this year. I realise that the differences with the council are under a different authority to the hospital however they do contribute to the overall picture.

Ultimately, Mr X, the shortcomings in the treatment of Parkinson’s patients in Xis inexcusable and I would urge you to investigate this situation as a matter of urgency especially given the official predictions for the level at which this condition is going to increase in the next 25 years.

I look forward to the opportunity to discuss this further with you.

Thank you for your time.

Yours etc.

I hope it is saying what I want it to say, coherently and intelligently!  I won't hold my breath on getting a result, but hey, who knows?

In the meantime, I plod on.

Debbie xx