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

So It Came To Pass . . .

Hello Friends!

I am writing this on Thursday 30 October, it will be published in a few days, so grammatical tense might be a bit off.

I am so sad this evening.  Today was the day for the hospice where I have attended one day a week for the past two years to close its doors for the last time. 

Grateful Thanks {I don't think so} to the British Government for all the cutbacks, and for not providing support for essential community facilities such as hospice care and other vital resources that are now funded by volunteers, community fundraising, and lottery grants.  These sorts of facilities should be supported by the government because, in the long term, they save more money than they would cost. 

So, today, by request, the last few remaining attendees, had our Christmas party, brought forward so we would not miss out on a last hurrah of comradeship and comradery.  It was a good day, we had a local Ukelele group, there was singing {of the loosest definition of the term 😁} of Christmas songs {who knew that I know all the words of Jingle Bells and I'm 'Dreaming of a White Christmas by heart? #nosongsheetneeded and I even remembered the words and dance moves learned to The Carpenters song Top of the World, which I performed live on stage at a Young Farmer's Association talent contest.  Think BGT with real talent!} There was plenty of festive food, a Secret Santa and more.  

We all did our best, patients of all situations and diagnosis, I promise you, we all tried really hard, to be as happy and cheerful as we could, but one by one, our jolly façades cracked, one by one the tears began to fall, and one by one the Kleenex boxes got passed around, and then the time came as it was bound to do when we all hugged and said our sad farewells.  Contact details were exchanged as some of us hope to meet up over the winter months, but these things are not always easy to coordinate between our medical conditions, mobility issues, appointments, and the weather.

Nobody visits me, hardly anyone phones me, my pen friends no longer write {possibly because I cannot write back?} and the online book club to which I belonged has dropped me from their meetings.  I am forgotten and I now face a time of isolation as the darker days of winter draw in.  The only contact I now have on a regular basis are the care team who come in twice a day for half an hour in the morning and evening.  The time I spent at the hospice each week gave me so very much to look forward to each week, and it leaves a big hole in my life, and in those of others.  I don't know how I will get through it.  There is no facility to compare within reasonable travelling distance. There is nothing that offers anything remotely like the activities we had.  I will find something, but it won't be the same.  This is going to take a lot for me {and others} to get over, if we will get over it.  Time will tell, but time is short.

Trying to end on a more cheery note, this is the lovely mug I received in the Secret Santa, along with a box of assorted Lindor truffles {a particular favourite of mine!}

Heartfelt and Grateful Thanks to Shalom House Hospice and all the staff, volunteers and fundraisers over the decades for the many years of service you have given to the local, and slightly wider, community.  You have been an unbelievable asset and credit to the community and to the many families and individuals who have had need of, and benefited from, your services. 

Until next time

Be kind to everyone you meet, for you don't know what they may be going through

Debbie xx

Emotionally Exhausted

Hello Friends!

After today, I am emotionally exhausted I have cried all day long.  It was never going to be a particularly happy day as it is the 16th anniversary of my father's passing, and due to my now limited mobility, I was unable to go to the cathedral to light a candle for him, which I would normally have done.  I try to focus on the good and happy memories that I have of a lifetime spent with my daddy.

and here we encounter a problem. 

I'm trying to insert photographs and Google won't let me

I did however go to Shalom the local hospice for my day I attend there once a week, but I was not prepared for the news that would greet me when I arrived.

DEVASTATING

It was with a very heavy heart indeed that they told me the Hospice will be closing at the end of October. The nurse who told me was in tears herself. Shalom has been a lifeline for so many families and members of the community over the past 18 years, since it was established.  Daddy went there during the last few weeks of his illness, way back, in 2009, not long after they had opened, and my mother attended there for nearly 3 years. I have been attending there for about 18 months.  It is a caring nurturing and supporting environment for those with life limiting medical conditions. however, the bulk of the running costs have fallen on the shoulders of volunteers and fundraising activities which of course can never hope to achieve the kind of sums of money required to run such a facility.

This is the point where I have to be very careful not to get on my soapbox, but I'm already on it. So here we go. Hospices, and similar facilities should not be left to function on, or rely on community contributions and donations and the work of volunteers. They are such a valuable and vital resource within any community and therefore they should be funded by the government in full.  

So there are about four more visits for me to the hospice and that will be the end of it.  I am quite despondent over it all, having, looked forward to my Tuesdays at Shalom. I have made friends but because we are all poorly, it is highly unlikely we will be able to meet up again.  I can only hope that as we move forward something else might come along, but at the moment there is nothing. It's going to be a long and lonely winter.

I cannot say enough to express my heartfelt gratitude to the staff at Shalom and for all the fundraisers and volunteers, who have kept it going for 18 years.  We will miss you here, and you will be missed across the county. You have been wonderful to so many people, providing respite, care, advice and more.

Here is their announcement, it is a link to a Facebook page but I don't think you have to be on Facebook to be able to read it. I hope you can.

Shalom Hospice

Dance Like Elaine . . .

Hello Friends

Didn't expect Strictly to wallop me like this. In a few days it's coming up on 16 years since Daddy died. He loved ballroom dancing and won several medals for his Foxtrot and Quickstep. We used to watch SCD together for the first six series and he would always be heard saying, "call that a Foxtrot???" He never did get that it was entertainment over dancing! I've always loved dancing, first one up on the dance floor, last one off, and have enjoyed SCD dancing my way through Saturday evenings for the last 19 years from September to December. So it's making me even more sad that I can no longer do this. Bloody Parkinson's is robbing me of everything I love doing. So if you love dancing {or anything else for that matter} go out and DANCE with all your heart and soul . . . dance like no one is watching, dance like Elaine {Seinfeld} if you must, but DANCE my darlings, DANCE . . .

The Beauty of a Courgette Flower

Hello Friends!

Well, there is weather we are having!  One day it's a blistering mini heatwave and we melt, the next day the temperature nose dives and we're thinking about putting the heating on during the evening.  It poured during the night and is now a beautiful blue sky morning, but it could be another hot one, despite the stiff breezes that blow bouncily across the land.

Oh! The irony of hosepipe bans in effect across certain regions only to be finding themselves on the receiving end of torrential downpours delivering a month's worth of rain in a day.   Mind, it will take more, much more, than a week's worth of torrential rainstorms to top up some of the reservoirs, and we are told that the hosepipe bans will be in place for up to a year, or even longer.

I am very tired of late, the tweaks to my medications have not resulted in any of the hoped for changes, so I have been through the mill for the last few months in vain.  Still, it could have worked out that things could have improved.  As it happened, they didn't and I can honestly say that I have not felt well for months, not myself at all.  I miss being me.  Consequently, today I slept until midday and the I began sorting out photos on the laptop.  Here are a handful of courgette flowers I photographed using my macro lens some several years ago when I was still gardening and able to hold the camera, pre Pandemic and pre Parkinsons. 

Courgette flowers are simply beautiful to look at, as well as making a casing for delicious stuffing mixes to make a light lunch with a twist!  

My late neighbour, Maggie, and I used to have a friendly rivalry over our courgettes.  She would sow her seeds in April or May in pots in her greenhouse, potting on and nurturing the seedlings for weeks, before planting out in June, whereas I would sow mine directly in the soil in late May.   Within a few weeks, mine had germinated and grown well, caught up with hers, and come harvest time we were both starting our harvest in the same week!   I suppose the growth of Maggies plants was slowed down every time she potted them on, which was two or three times before they actually arrived in the garden, whereas mine just had to focus on growing without adjusting to root disturbance and new pots ever couple of weeks.

Do take your time with these, look at the incredibly detailed lines, the fine hairs, the subtle changes of colours in the bright yellow petals, the tiny spikes that do not deter slugs as one might expect!  These flowers are miniature works of art, and most of the time go unnoticed as they tend to bloom half hidden under the much larger leaves of the courgette plant.

Until next time,

Debbie xx

It's A Tad Bit Warm

Hello Friends!

Like most of my fellow countrymen and women, I melted last night in the 30 degree heat.  My living room, the coolest place to rest {note, not sleep} was a balmy 28C at three a.m. despite the multiple fans blowing on me. 

With Parkinson's, and other medical conditions, such conditions are doubly dangerous as we cannot regulate our body temperatures, so have to be extra vigilant during heat waves and, equally, the cold days of winter.  I have done all I can: wet flannels kept in the fridge, lots of cold, plain water, curtain chasing and window opening/closing as the heat rises outside, resting and not exerting myself, wearing loose, natural fibre clothing, and other measures to try and keep myself from overheating.  I also have to be cautious over storing my medication as the temperature goes over 25C.  Can't put it in the fridge, it's a bit like a bowl of porridge, must be just right.

I did take a couple of snaps on the phone, of some flowers in the garden, but it's too hot to stay outside for more than a couple of minutes and my tremors do me no favours holding the camera.  

I am not going to bleat on about the difficulties with the local authority and paperwork!  Finger's crossed recent lost in the post, lost in the office, and other issues are now resolved and I can move forward getting much needed help.

Instead, I shall tell you about the ragwort plant that is growing in my border.  Before anyone says to pull it up, I  have researched it online, and I do not have livestock, it does not jeopardise livestock, I will dispose of it properly at the end of the season, and finally it is a valuable source of food for about 40 species of wildlife, most notable the Cinnabar Moth caterpillar, so it's staying put!  

Until next time

Stay safe and stay cool!  Be sensible in this heat!

Debbie xx 

What a Story This Rose Could Tell . . .

Hello Friends!

Many long years ago, I grew up in the next street over in a house that had been in my family for three or more generations.  Along one hedge was a massive rambling rose that in Spring and Summer was covered in thousands of tiny pink flowers.  

I recall my mother telling me that it had been planted there by my Great Grandmother.  Even if she was wrong and it was my Grandmother, that rambler has been there for nigh on seventy years, maybe closer to eighty.

Until recently, I was able to peep over the wall of an adjacent garden and see that ancient rose still there, giving it's all.  In the last couple of years, the new owners have built a high fence, and I can no longer see where the rose blooms.  I can only hope now that it is still there.

A short while ago, I noticed a pink rambling rose flowering on a neighbour's fence. I told the neighbour how very like the rose we had in my childhood home this looked.  She then shared with me that her rose that I admired so much as it reminded me of the one from my childhood had come from the same garden. Indeed, it was a cutting from the very rose that was growing there in my childhood, that I knew and loved so well.

Much to my delight, she gave me a cutting that she had taken a few weeks earlier that was already established in a little pot. I brought it home and looked after it while it established, and the following year, I potted it into a larger terracotta pot. It didn't do too well last year, but this year it is put on some considerable growth and for the first time, has produced a single flower.

I am going to have to make an effort to try and find out if the new owners of my childhood home do indeed still have that rose on the hedge, because I think they might like to know its history.

Here are some photos the one along the wall is growing on my neighbor's wall. As I call it, the Daughter of Great Grandma's rose.  I hope mine will continue to flourish!

Do you have any inherited plants, or ones you know to be old in your garden?

Until next time

Debbie xx

All or Nothing

Hello Friends

First, for those who signed the Parkinson's petition I shared, Thank You.  Here is a transcript of the debate.  It's a start.

Parkinson's Charter Debate

It's that time of year again when ICAD takes over my desk.

I am not following the prompts.  Here's the first few days

Title Card

1/61 mixed media collage using some very pretty paper that was wrapped around some Easter eggs.  I did two slightly different versions.

2/61

Mixed media incorporating an ATC and Nuvo drops

3/61  Made using up scraps from a previous project

4/61 Mixed media incorporating an ATC. photo does not do justice to the vibrant colours or the gilding wax 

It's not easy this year and with the unpredictable nature of Parkinson's I know each card might be the last I can manage.  Then again, I could go on for months, even years, being able to do art. That's the nature of the beast.

Since I last wrote things have changed. Here's a quick update. As I told you my medication was changed. I had a consultation with the doctor on May the 6th. On May 9th he wrote to my GP. It took until may the 28th for the GP to get back to me regarding the letter. in the meantime, I had already changed my regime based on what we had discussed. The GP was way behind and having to play catch up.  Then just this last week, I've had another phone call, my Parkinson's doctor is tweaking my medication again. Is this going to take another month now before my GP catches up?

Finally, a care package has been put in place.  The agency started with me last week. I have one hours help a day. However, I am to be reassessed for more help up to three more hours a day.  

I have lost count now of how many people have been sent by the council to assess my bathroom. I am entitled to a grant for conversion, and every little, no matter how little helps.  It's just taking forever!

Suddenly, after months, even up to a couple of years, of frustration and waiting, I've got people throwing themselves at me from all directions now.  Carers, cleaners, general help and companions. It's an all or nothing situation.  My head is in a spin!

Until next time

Debbie xx

Medication Mayhem Misery

Hello Friends!

Thank you all for your kind comments on my last blog which was a bit of a Pity Party.  

While I am trying my best not to wallow, it isn't easy not to.  A sad fact compounded by the events of last Tuesday afternoon.

I had a long overdue consultation, if you can call it a consultation, via video link with the doctor who is overseeing my Parkinson's treatment and management.  I say this because his title is Doctor for the Care of the Elderly.  In other words, he looks after the over 60's and does not specllialise in any one field.  I know he was seeing my dear friend for COPD, a far cry from Parkinson's.  This in itself does not instill me with confidence.  Anyhow, I digress.  The Parkinson's nurse was also supposed to be linked in to the video call but she failed to show up.  

I had to put up with the usual diatribe that I should consider moving house, leaving the area and uproot hundreds of miles away to be nearer to better care provision than is offered in my remote area.  This would also offer me better socialising opportunities {do I want that?} with no thought for the few friends I have here, or the stress that would come with looking for somewhere else to live, buying, selling, moving and so on.  Most of us have done that, would most of us want to do it when we were already not in the best of health?  Uproot our entire world where our roots run deep in exchange for pastures new?  Giving up what few friends you have and be dropped in some strange and alien community miles from home.  No, not for me, thanks all the same.

Then came the discovery that for many, many months I have been near overdosing on a tablet that was prescribed to be taken five times a day and which should have been no more than twice a day. Heigh ho, just when you think your management can't take any more twists and turns.  I take copious notes during such consultations, and during this one the Doctor made a minimum of three changes of mind as to what I should be taking and in what combination.  This is par for the course, and I wonder if it doesn't lie behind me being given the incorrect dosage instructions.

So, effective immediately, I'm now on this new, lower dose and guess what?  My tremors are now twice as bad today as they were at the start of the week.  

No one knows who is to blame, everyone is blaming someone else, and I'm stuck in the middle.  I have already started making enquiries.  I don't want to get anyone into trouble, Lord knows the department could do without that, but my faith in the system is totally shattered now.  First things first, I have been advised to request to be copied in to the results of the investigation.  Now, I have not asked for this but have been told that when any mistake is made it must be investigated,  So, Monday morning I will be in touch with them over this.  Then, I will request a complete transcript of my medications since the beginning of my diagnosis. After that I will decide how to proceed, but right now I am stuck with a team of medical providers whom I can no longer trust to do the best they can for me.  

Watch this space!

In the meantime, there have been no applicants to my advertisement for assistance at home.  This is worrying indeed.  I need help at home desperately now.  My case worker on the Direct Payments team at the Council left and somehow my case file got misplaced.  If I hadn't phoned to follow through, I would still be missing in the cracks that seem to be everywhere.

Sometimes I feel as if I am in freefall over no man's land.  It is making an already stressful time even more difficult and more stressful. 

At least I have a gardener!  We've planted up some osteospermum Purple Sun, so hopefully they'll be providing some stunning colour soon.

Until next time
Debbie xx

That Which I Hold So Dear . . .

Hello Friends!

Happy May Day!

I haven't been around for a while as I'm not in a good place at the moment.  There are times now when this horrible medical condition is overwhelming and I am hoping next week's much needed appointment will help sort something out to enable me to resume some degree of normality.

I have been trying to think what aspect of Parkinson's to address but there are so many it is difficult to know where to begin.  There are the day to day living experiences and changes, the challenges of adapting, of not being able to adapt, the financial burden {something all people with any sort of disability get lumbered with}, transportation issues, mobility issues, mental health issues, finding reliable help, even finding unreliable help, or just plain pouring out my angst and misery at the position in which I now find myself issues.  There's an endless list.  I promised myself I wouldn't wallow, but these days it is sometimes difficult not to.  Add to all of the above, the ever increasing worries over our NHS and medication shortages and a perfect storm is brewing.

The last few days have been particularly difficult with the arrival of such gorgeous weather at long last. Yet, here I sit, unable to go outside for very long because I am unable to put my sun screen on evenly, and all I can do is watch the listless clouds drift slowly by and ponder on what I would have been doing in these glorious spring mornings and evenings {afternoons are too darn warm}in what should have been the fun years of my retirement.

I hadn't planned to retire upon reaching State Pension Age, but it has been forced upon me.  My plan had been to either work a small part time job or work from home selling my makes at craft fairs or on Etsy. I was to have plenty of free time to carry on hiking and rambling across my beloved Shire.  It was not to be, ah! the best laid plans of mice and men often go awry, indeed they do, in my case they went awry and away.

It was not to be, and it is starting to become difficult in accepting that I will never be able to do again the things I hold so dear.

Oh, but what a difference in a week!  Ten days ago I sat huddled under a blanket keeping warm, now the last few days it's been a struggle to keep cool!  At 5:30 a.m. this morning, as daylight began to creep over the east facing hedge, I was opening the windows of my cottage wide to let in some cooler air, trying to keep the living room as cool and comfortable as possible before the midday heat arrives.  I've still got my vest on; I've cast not a clout but might today as it's already hot indoors.  Ironically, next week it seems we shall be glad not to have cast those clouts as colder days are predicted again.   One thing that is helping me keep hydrated is my new water bottle by Rhiannon Art

A little pick me up treat that will be useful in the hot summer days. It comes with a choice of caps, straw, flip top, or wide mouth and holds 750mls of hot or cold liquids.  Proud to be Welsh!

Until next time

Debbie xx

April 1st 2024

Hello Friends!

Happy April 1st

Another month starts today, this one is if April showers do come your way, they bring the flowers that bloom in May . . . 

Late to the party, the pink camellia is just now coming into full bloom and the red one just opening up!

I actually did some gardening yesterday, well not gardening proper but I trundled around my borders using my rollator/walker to keep me upright, and with a pruning shears in hand and a long handled pruner too, I did a teensy, tiny bit of tidying up.  I know I will never garden properly again and it does make me sad, but it was something out in nature and it felt oh! so good to have the sun on my face if only for a short while.  Hopefully there will be more to do in the coming days, it isn't much but it is better than nothing and, like I said, that feeling of warmth from the sun, after the horribly, long, cold and wet winter was just amazing.

I sprained my wrist and might have made it worse by pruning!  Yikes.  

Your responses to my last blog have been amazing.  Thank you all, and especially if you were able to sign and share the petition.  Every signature counts and matters!  There will be more coming on Parkinson's in the near future as I sift through everything.  As some of you said in your replies, we all of us know so little about it.  Education is a key word!

Until next time

Debbie

Into The Unknown With Parkinson's

Hello Friends!

It's been a while since I've been on Blogger.  I have decided to change tack and write about my Parkinson's journey {don't like using the word "journey" but it'll do for now} although it's more of a voyage into the unknown, like the Spanish Conquistadors and Christopher Columbus and all the other explorers who sallied forth into the great unknown.  Only they had a choice, I don't.

So, what is Parkinson's?  First things first. You may know it as Parkinson's Disease, but there is a move now to drop the word disease which gives the impression that it is contagious. It is not contagious, and it is now being known simply as Parkinson's.

Parkinson's is one of the fastest growing neurological conditions.  In the UK alone there are approximately 145,000 people diagnosed with this condition {around 83,000 men and 60,000 women between the ages of 50 to 89} and it is calculated that by the year 2050 there will be over 25 million cases worldwide.  It is more common amongst men than in women. It is progressive and debilitating, it robs you of being able to do the simplest of tasks, and there is no known cure, and it remains one of the most underfunded and under researched of medical conditions.  Try to imagine what it is like for your brain to be telling you to pick up that book but your arm and hand just will not comply and you hover above the book unable to grasp it.  Or when you are walking along, something that is automatic but all of a sudden your feet are rooted to the ground, your torso maintains momentum and over you go on your face.

It sneaks up on you and awareness of changes in your own body and discussing them with your GP it's about the only way of obtaining a diagnosis. There is no definitive test for Parkinson's, yet there are about forty different indications that can manifest years before the condition is suspected, never mind diagnosed.  Little things we might blow off as something else.

This is my story.

As many of you know I was a caregiver for my mother for several years. During this time, in 2015 I developed a frozen shoulder in my left arm. It was unexplained, I had no idea what was causing it, but because I was caring for my mother, I pushed my own medical needs aside to continue caring for her. Time passed and there was no ease to the frozen shoulder, but I pushed through the pain and mobility issues because I had to. Sometime in 2016 my left wrist started to hurt, and at that point I started to think perhaps I had a trapped nerve, or possibly arthritis. The pain was intermittent and became more of a minor inconvenience that I tolerated and ignored. Had I known that these two things were early symptoms of the onset of Parkinson's I would have probably gone to the doctor far earlier than I did. In 2017 the frozen shoulder finally started to ease but then I notice my little finger started twitching from time to time. Over the coming months the twitching started to spread until it was my whole hand from my wrist down. People were starting to notice, but still I refused to go to my doctor. My mother's condition deteriorated she went into hospital in early 2018 and from there she went into a care home. I was travelling for about eight hours a day, back and forth to visit and as a result didn't even give my tremors a second thought. She passed away in the autumn of that year and I focused on trying to rebuild my life by going back to work trying to pick up where I had left off 12 years earlier.  I had noticed I was getting slower, but I put that down to being older and less fit than I had been, and to my body's reaction to the cumulative stress of fourteen years of being a caregiver. I was incredibly tired and often found myself having to push hard to get through the day. It was winter and our bodies react differently, and I kept telling myself I'd get back on track properly after a winter of hibernation and self-care, then come the spring I would be able to start walking on a regular basis, regaining my former fitness. Of course, the next thing to happen before I had a chance to even think about putting myself back on track was the pandemic. We all know what that did for so many of us, no need to explain further that it knocked my intended recovery for six.  Of course, I know now there will be no recovery for it is incurable and progressive.

I muddled on, there was no improvement to my tremor but it wasn't getting any worse and I genuinely started to believe that it would heal itself eventually because nerve damage can take a while and there was no need to bother the doctor with something that would heal itself in the middle of the pandemic when appointments were conducted over the phone. However, in the summer of 2021, I noticed a tremor in my left leg. That was when I realised there was probably something that would require medical attention happening and I went to visit my GP. Everything was still very much about wearing your masks and keeping your distance, so off I went only to be told that he was very concerned and there was a high likelihood that I had Parkinson's.  He was thorough examining me and in questioning as any GP could do without being specifically qualified in neurological conditions. It seemed that so many things over the past four years or so were indicators. Sudden onset of an unexplained frozen shoulder being one of the major early indicators, even before tremors started to develop. The slowing down of movement and the increased tiredness, again both indicators. So I had evidence of four indicators and ignored them all through self-diagnosing. He sent a referral off to the local hospital and by the end of September I had been seen and officially diagnosed.

Since then, it's been like a roller coaster.  I will talk about my experiences over the coming weeks.  It won't be all about Parkinson's, there will be other stuff, but if you don't want to hang around, fair enough.  Thank you for being here this far.

In the meantime, please consider signing this petition to get better recognition, support and funding for research into this heinous condition.

Increase funding for people with Parkinson’s and implement the "Parky Charter" - Petitions

Until next time

Debbie xx