Parkinsons and me

Eight Years On: Reflections on Life, Loss, and Finding Value

Sun, 11 Jan 2026 21:16:06 GMT

Parinson's disease and living with it.

December 27th, 2025, marked a significant anniversary for me. It has been eight years since a neurologist at Glasgow Royal Infirmary gave me that look—the one that says, "this is a difficult diagnosis"—and told me I have a life-changing illness with no cure.

I’ve vlogged and blogged about that moment many times before, and I don't want to dwell on the past. But looking back over these eight years, I find myself asking: What has changed?

The Physical Toll and the "Medication Paradox"

As expected, some symptoms have worsened, and new "pests" have arrived. One thing I didn't anticipate was the side effects of the medication meant to help me. While Co-careldopa helps manage my tremors, it has introduced Dystonia—involuntary muscle spasms and "ticking" movements that are a challenge in their own right.

My daily routine now involves a "cocktail" of support:

Medication for neurological and joint pain.

Antidepressants to manage the anxiety and depression that often come hand-in-hand with Parkinson’s.

Treatments for acid reflux, asthma, and the general aches of "auld age."

My mobility isn't what it used to be, but I am grateful that, most of the time, I can still move. I’ve learned that an exercise routine isn't optional—it’s a must to keep the legs moving.

The Mental Fog

While physical exercise helps the body, maintaining brain function is a different battle. Cognitive decline is real. Information retrieval is my biggest hurdle; words often evade me during conversations. I can be halfway through a sentence and totally lose the thread of what I was saying. It can be frustrating, but it is part of my reality now.

Letting Go and Finding New Purpose

It isn't all doom and gloom. I like to think of myself as a courageous wee soul with a huge heart and a lust for life.

Admittedly, I’ve had to mourn the loss of old hobbies. Hill walking, Munro bagging, playing guitar, and painting are no longer safe or possible for me. However, as those doors closed, others opened. I have poured my energy into voluntary work within the mental health sector:

Lanarkshire Links Sigma Free

Mind Waves Podcast: Look out for "People Like Us," launching on January 30th!

Parkinson’s UK Mental Health Group

There is a unique healing power in helping others. It feeds your well-being in return; the more you give, the more you seem to receive.

A Global Perspective

These blogs are here to show that you can live with an incurable, degenerative disease and still be of immense value. If you don’t feel useful, the diagnosis hits much harder.

Reading about others around the world has given me perspective. I’ve spoken with people in the USA navigating insurance hurdles and someone in Venezuela with almost no support. Most heartbreaking was a "fellow Parkie" in Africa who had to walk 10 miles just for basic pain relief, living in a community where some believed the disease was a form of possession.

It was a massive eye-opener. It reminded me that while my struggle is real, I am not alone, and in many ways, I am fortunate.

To the Newly Diagnosed

It is natural to feel sorry for yourself sometimes. I've learned to allow myself a period of "mourning" whenever a symptom worsens. We are human, after all.

If you have been diagnosed with Young Onset Parkinson’s Disease (YOPD), please remember:

This disease is as unique as your DNA. Your journey won't look exactly like mine.

Find your tribe. Whether it’s on TikTok, Facebook, X, or Threads, there are communities waiting to welcome you with open arms. They will support you when you need it most.

I don’t post as often as I used to, but it feels good to reconnect and update this page. I am still here, still participating, and still finding value in every day.

7 Years

Mon, 14 Jul 2025 14:49:54 GMT

What hhave we learned

Making Every Day Count

Making every day count is my top priority. Feeling grateful to be alive doesn’t just happen—it takes work. It must be earned.

This wild beast of a disease doesn’t know what it wants. One day it attacks your movement, another day it’s your sanity—assuming there’s any left to speak of.

I keep grasping for that feeling of worthiness. I ask myself, “How do I achieve the things I want to do?”

Well, you have to be bloody adamant about it. Sometimes you’ve got to push through the barriers, go around them, or risk getting left behind. You have to believe that you are worth fighting for.

If you want a meaningful life, you have to create it. That’s the simple truth.

Life can pile on top of you—hit you with wave after wave of emotion until you feel like a ragdoll. But this is your life. Don’t give it away for free. I recently lost a good friend, and it affected me more than I can express. What it did do, however, was help me appreciate the life I still have. Sure, it might be filled with dodgy motor skills and cognitive brain fog, but it’s mine. And whatever I’ve got left will be lived how I choose—on my terms, in my direction.

We humans are deeply emotional creatures. We may not always show it, but those feelings are there. Suppressing them doesn’t work.

Right now, I’m working with a Glasgow-based charity called Mind Waves, collaborating with a talented group of individuals to create a podcast on mental health. We’ll be recording our first episode next week—more on that soon. I’m also volunteering with Stigma Free Lanarkshire, another incredible project led by warriors of mental health.

All of these things help shape the man I am.

✨ Don’t let anyone dull your flame.

Parkinson's and me Vlog

Tue, 04 Feb 2025 14:38:06 GMT

Vlog 1

What is Young Onset Parkinson's Disease

Fri, 15 Mar 2024 19:36:37 GMT

How does my brain work?

Living with Parkinson's Disease: An In-Depth Look at Symptoms and Medications

Parkinson's disease is a progressive neurological disorder that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while tremor may be the most well-known sign of Parkinson's disease, the disorder also commonly causes stiffness or slowing of movement.

In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time.

Although Parkinson's disease can't be cured, medications might significantly improve your symptoms. Occasionally, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.

Medications for Parkinson's Disease:

- Levodopa, the most effective Parkinson's disease medication, is a natural chemical that passes into your brain and is converted to dopamine.

- Carbidopa-levodopa infusion, which involves the drug being infused into the small intestine through a feeding tube.

- Dopamine agonists, which mimic dopamine effects in the brain.

- MAO B inhibitors, which help prevent the breakdown of brain dopamine by inhibiting the enzyme monoamine oxidase B.

- Catechol O-methyltransferase (COMT) inhibitors, which help prolong the effect of levodopa therapy by blocking an enzyme that breaks down dopamine.

It is crucial to work closely with your doctor to tailor a regimen that provides the greatest benefit with the fewest side effects.

This blog post aims to provide an overview of Parkinson's disease symptoms and medications. If you or someone you know is experiencing signs or symptoms of Parkinson's disease, please consult a medical professional for an accurate diagnosis and appropriate treatment..

Radio Parkies

Thu, 29 Feb 2024 20:22:39 GMT

Let your voice be heard

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Changes and living with them

Tue, 15 Aug 2023 13:31:05 GMT

How i cope with day to day issues

YOPD comes with so many issues in daily living, unless you have to deal with it or care for someone with it then its a very difficult thing to explain however i will attempt to in this blog.

Lets start with one of the basic functions in life is taught to us at a very early age, it may seem a simple function but it dominates a lot of what i do in my life from socialising to networking to sustaining a healthy body.

yes i am talking about the simple act of eating!

navigating your way through this can cause a lot of stress, even popping out for a coffee with a friend seems s innocent until you have to research where you are going first, firstly are there steps? and if so how many would i be able to manage on any given day?

where are the toilets and are they accessible for me ?

i find some cups very difficult to handle and awkward to hold , then there is the actual food , sometimes the actual food can be an issue will i be able to eat the food without spillage (depends on how my symptoms are that day) .

This is all before i am even out the door, these are all issues that people with disabilities are faced with on a daily basis and in my experience can lead to isolation

Why would i put myself through the ordeal some people think there is an element of not caring about ones appearance when you have spots food spillage over your clothing i know for me that couldn't be further from the truth its embarrassing to see how you are looked at in public which brings me back to the point where some people will chose to isolate rather than negotiate the whole routine, leading to mental health issues .

i am not blaming the world for my personal situation in fact i am very aware its no ones responsibility but its good to point out these issues

This is just awareness a part of my daily life is Parkinson's Advocate it lets me share my day and gives me purpose as well as sharing my struggles with others .

wait till i do the blog about male toilets having a tremor and using a urinal can seriously damage your health.

Barcelona WPC23

Wed, 12 Jul 2023 09:28:39 GMT

6Th World Parkinson Congress

Although this was the 6th congress it was my first, i will bring you more on my experience once i have absorbed the whole event .

In the course of the 4 day event i met so many people who inspired me not only down to their sheer determination physically... but also with spirit courage and fellowship.

So many with all different symptoms levels of progression many languages and no barriers to hold us back in our drive for quality of life .

i have to say thanks to my choir family for their support not only spiritually but also financially covering half of the cost i will be eternally greatfull for the chance to be their.

a massive thanks goes to Jean Paul the boss man from radio Parkies who sorted out my accreditation and media pass throughout the event.

and not forgetting chris ,Angie, Blake ,Lorie and the megastar that is Eric for hanging out with me

and my BFF,s who were there chatting me over the days i was there you have no idea how much it helped with my social anxiety love you guys x

Last but not least i am looking forward to let you know that you will be hearing more podcast, videos and talks on Voice therapy with myself and Andrea Malsom it was great to meet up after working virtually for a year.

It's been a long time

183:816584140 (Thomas Mccallum) — Tue, 15 Nov 2022 12:46:22 GMT

How mental health can impact on your PD

I haven't really written a blog for some time not through any other reason than I have been dealing with depression.

Many changes have come into my life and not always for the best, as I sit here and ponder over the last few months it all seems so surreal like I have been away looking back at myself.

Who is this guy I don't know ? where has he come from? how did he get here?....

well that is not so easy to put in words because it's all about feelings!

When things change in our life not always so easy to accept these changes for they can leave you with a sense of pain like you have never felt before isolation, loneliness, unworthy and bad are words that spring to mind many nights going over and over issues can lead to a sense of hopelessness and that is exactly how i felt.

I have been through many dark times in my life but to lose ones hope has to be the utmost and darkest feeling of all to see no way forward but to exist can destroy you in a matter of weeks.

For me the answer is therapy I have leapt from where i was to who i am now and i don't understand how it happened but i hope to over the next few months

Dopamine agonists

183:816584140 (Thomas Mccallum) — Sat, 20 Aug 2022 16:52:37 GMT

D.A.W.S.

dopamine agonist withdrawal syndrome

After 6 years of dopamine agonists my head is so bad i have no choice but to take the chance to try and clear it.

Its a complicated issue so if you want to know more on agonists then google it and you will get an idea of how it became.

I am just over a week into the reduction phase and the withdrawals are in, achy body sweats and loads more, it messes with emotions and its not a good co host of stress but thats the problem!

How do you stop stress or how do you not react to it.?

Now after 3 weeks i finally had a bit of time to record what is happening so far.

Looks can be deceptive

183:816584140 (Thomas Mccallum) — Thu, 05 Aug 2021 12:18:59 GMT

Why do I do these blogs

I sometimes get asked why I write these blogs and what good does it do?

I don't know if its of use to anyone other than me, it is only intended to be my experience of living with a brain disease that is degenerative, I feel the difference year in and year out and the stresses and strains of everyday life have a much greater impact on life, but i am not here to talk about the physical side... i want too relay the emotional side that seems to be ignored and discarded as some sort of non existent symptom.

Some of the medication that is given to us to deal with the physical side i.e. ''Dopamine Agonists'' are brutal on your emotions they can change who you are and how you deal with situations but you don't know this until its far too late.
in most cases it takes a year or longer to withdraw from them, yet the medical profession do not take it serious enough to stop prescribing them.

For the most I sanitize my blogs just for the sake of trying to relay a message without causing any undue upset, but I wont be doing that anymore , I am not a brave man by any means but equally I need to get it out.

The last 4 years my emotions are changing, cognitively its so difficult to even retrieve info to relate what I am saying that often some things are taken so very wrong. I have learned to suppress my feelings to avoid confrontation because that leaves me in a very dark place leading to physical symptoms being worsened.

Of course I am scared would you not be ? i am not that brave guy who makes a bucket list and gets on with it, i wake up with it hanging over my head like a waiting guillotine not knowing when it will strike , i have been sober for a long time and I have to say there has been moments when that thought has entered my head a way of escaping the emotional turmoil however I haven't and nor shall I wont find my answer that way, another battle too face on a daily basis .

YOPD is like any other degenerative disease it takes it all. confidence, friendships, relationships and imposes you on a platform of being ridiculed and misunderstood.

Daily being judged for how i speak(Quiet or slurred) ,walk(Slowly), Think and so many other things that neither i or anyone else who has Parkinson's can control.

The medical profession look at it as an ''Old persons disease'' and because there is no cure and its degenerative we are shuffled off to the waiting room,

Now considering some of us could be here for another 20 years that's a long time to be trapped in mind and body without feeling of value , its a long time to be misunderstood, there's not a day goes by that i don't think of how much as an adult i put into this planet and now I can't...... it shows.

4 YEARS ON

183:816584140 (Thomas Mccallum) — Sun, 11 Jul 2021 14:46:16 GMT

Journey so far.......

After four and a half years of learning by experience sometimes my positivity can ebb somewhat, The list of conditions i now have are Parkinson's, Asthma, reflux, meralgia paresthetica, and Joint Arthritis and each one exacerbates the other.

Their is realization that i wont be able to just grow old gracefully no matter how long this is one battle I wont win no matter how i try to evade it.

Over the last few months my nights have been dogged by insomnia and episodes of sleep walking of a kind that has an effect on others around me, it would seem that these episodes are of aggression and that is scary not just for me, i have no control in how they arrive or how strong they become.

the control of excess stomach acid is so bad that it is burning my gullet and irritating my lungs so much so that i have a severe cough that may never go, In this covid climate it can be a very annoying thing for other folk to deal with.

mental health also is a game of seesaw and trying to keep the balance is nigh on impossible, it robs you of many things abilities that you were once mastering are gone and it leaves a massive gape in my soul, it affects friendships , relationships self worth , it brings resentment into your life and basically it saps the life right out of you.

Today is one of those days , today is a day where i hate Parkinson's so much where i hate the fact that my self independence is slipping away and are are no longer an asset in this world.
Its a day where i want to be free from this horrible disease that s destroying my body bit by bit however i am trapped within.

That being said, i cannot change anything and i will get back up and keep trying....

Its such a fickle world.

183:816584140 (Thomas Mccallum) — Fri, 18 Dec 2020 11:26:10 GMT

We have lost a year

This was supposed to be an end of year blog! having a look back on all that has been over 2020, but in all honesty i really cant face going over some of it and we cant change it,

so my 2020 review is more of a lets make 2021 a better year, a year of making memories in this ever changing world spending time with my beautiful Susan spending more time with my Family and friends for all who have supported me over 2020 thank you, for all the people ii know,
take your time enjoy your year and i give you nothing but love x

It's that time of the year

183:816584140 (Thomas Mccallum) — Fri, 20 Nov 2020 12:55:43 GMT

What is parkinsons

If i were to try and describe what Parkinson's was it could be as simple as telling you that the part of the brain(substantia nigra.) that controls smooth movement over all actions is dying then that would be a fair account.

however it really is so much more, A typical day for me can be as extreme as not being able to walk or as good as just stiffness and aches, having to negotiate anything from bus drivers with attitude to Que's for toilets missing busses, having to leave places because they don't have the proper stuff for me to be able to be independent is not unknown.

However I can tell you how it feels to piss yourself whilst trying to undo a button it's degrading, i cant tell you how bad it is to tell a DWP assessor that you have trouble cleaning yourself because your hands wont work today, you really have to remove all your dignity and self worth too prove that you need some extra help to try stay independent, it would seem that a neurologist diagnosis is really not enough.

There are many things i cant do but there is loads i can do and one of them is looking after my mental and physical health not always easy , however i really am so fortunate that i have some caring individuals who i rely on and i thank you all .

i really don't think this pandemic wont go away anytime soon and we all have to learn how to cope with it and at any cost , Christmas will be a very different affair this year , i used to love the Christmas gigs with the choir that really made the year for me but i am neither fit enough or able enough to do this now..

I hope next year will be something of a better summer for us all and if we do what we know is right then it will be better,

someone recently asked me why i write these blogs?, the simple truth is i didn't know what else to do , the cold way the diagnosis was delivered will live with me for ever, again i was lucky enough to have the support of 2 friends that day, but for me writing it all down makes it liveable makes it much more of a real thing and not an exaggeration it allows me to accept things at my own speed .

Fear plays a massive part in all our life's but when you are presented with a diagnosis and you know it will get you its just a matter of how quick or how slow, then it makes you look at this world in a far different light.

Today and right now are the only things that matter,,,, yesterday is long gone and tomorrow has not arrived yet so living in the moment is the only thing i should be doing and that's what i will.

of course 3 years down the line there are significant changes , less sleep more fatigue stiffness is a massive change i just deal with it as an ongoing health management.

This week Parkinson's uk launched a new media drive for help , no money is being raised to help with research please if you can donate to PDUK it would go a long way to help.

Success depends on me

183:816584140 (Thomas Mccallum) — Tue, 18 Aug 2020 04:10:35 GMT

And what you give is what you get.

Another night. another day, another hour, it's a constant ticking of a countdown it is always there, i really don't have to explain what it is like for anyone who suffers with any kind of degenerative disease.

Things in the last year and a half have steadily progressed not at a massive rate but things have changed.
their is more physical pain there is more lapses of memory forgetting of simple things like words for everyday items i know who i am i know where i want to go, and why i am like i am.... but it makes it non the easier.

Life in a bubble looking out changes perspective, i now see things i have never seen before the beauty in a raindrop dripping from the edge of a leaf, the sound of laughter the smile from a friend a beautiful voice in full song things that feed your soul, i sometimes feel like that scene in the film where the lead is static and all around is at hyper speed.

You see people fighting, screaming to be top dog trampling on all who get in their way never seeing the wider affect it has , they don't see the misery that goes with that person and home to the family.

I see people struggling to cope with life on a day to day basis good people who don't need any more pressure can you?

As dramatic as it sounds it's all fact... i was having a conversation with a friend another Parkie like me the other day. and i said i would give my right arm to have a day feeling whatever normal is, and he said no you don't because you would miss all the things you see and appreciate now.

And that my friends is a fact money means absolutely nothing to me yes i need it to live but enough to live this is all i need, i have no use for status i have no need for power and i have no desire to have it all my way.

Currently i am traveling over the north of Scotland with my Cousin seeking out the pics we like to take experiencing the wonders of our world and even in the rain its stunning.

So feed your soul not your ego. if you see someone in pain try help them but if you cant don't make life any harder for them.

Sleep at times can be difficult but not all the time i just assess as i go along and try hang on to what i need to, lavender oil is a top tip as is meditation i think things are pretty much and an oap nap is strongly advised.

Covid still lingers on the horizon be careful protect yourself and those around you,

XXX

Lockdown and its effect

183:816584140 (Thomas Mccallum) — Mon, 27 Jul 2020 04:18:14 GMT

Lockdown had it's moments

2020 so far has been strange to say the least, no one could have predicted this our planet is screaming out for us to take care of it and yet the powers that be simply don't want to know ,, instead they continue to devour all its resources where a human life is calculated in cold hard cash.

Wed 29th i will go back to work for the first time since March because i fall in that category of being chronically sick, at the start i found it very scary and was aprihensive about going out and for the first 10 weeks i never crossed the threshold.

The implications for someone with a respiratory condition are far too serious not to heed, furthermore the problematic issues surrounding medication and the issue and delivery leaves a lot to be desired.

I am at the point where i am sick to the back teeth of wrestling with the GP surgery to get my medication on time i am sick of Pharmacy's telling me that they have no meds for me only for it to turn up 2 weeks later with a process date of the day i phoned.

when i started my journey i was full of hope determination to maintain a quality of life and i have kept my side of the deal, unfortunately that's wiped out by the sheer neglect i have received thus far, what is it they don't understand/?

i need to get my medication on time if not then the aftermath is almost immediate and lasting.
This if i am honest pisses me right off , i have no chance of escaping this Parkinson's will get me in the end so all i am looking for is a quality of life whilst i can i am not asking for any preferential treatment just the same as everyone else

that being said i have in the face of adversity kept going through lockdown and managed too survive.....however things have been tough , with another dip in my wellbeing which affected my lungs, apparently due to the symptoms of Parkinson's an my reflux acid had been flowing into my wind pipe and into the lungs causing irritation ,

What i am asking for is basic, the best quality of life i can get for as long as i can i maintain my part in this by looking after my condition and taking medication on time but i can only do that if i have them.

I was deeply saddened to hear of the passing of Denny Oliver, he was one of the best songwriters i knew for those of you who don't know who he was let me elaborate,

Denny was the main songwriter vocals and guitarist with Glasgow band Scheme who ii was a rodie for a few years, a true gentleman and great songwriter rest in peace Denny.

Who am i

183:816584140 (Thomas Mccallum) — Thu, 02 Jul 2020 11:44:07 GMT

Who am i ?

Who am i? , a very good question and how can you really express that, for in our world of rapid change we have to adapt with it even if we don't want to.
For me over the last 2 and a half years my life has been dramatically altered without my consent, how do you quantify those changes well! the simple answer is you can't .

Life that includes pain either physical or spiritual on a daily basis is a struggle, a battle to maintain who you are and those daily struggles, 40 symptoms from sleep to aches and pains stomach problems wait gain and loss can overwhelm you and change you.

I haven't had a pain free day for over 2 weeks now and it has took me so much energy to fight the urge to give up, some of the pain could have been avoided but because of someone else's lack of care and empathy i have to deal with the consequence's.

the lock-down serves to save needless loss of life but some of the restrictions put in place have had a direct detriment to my health. medication not being sorted properly and ends up late or not being dispensed at all then mysteriously turning up a few weeks later, that is seriously out of order!

i would normally order and collect a prescription within a 2 to 3 day period making sure it was ordered to be collected on my first day off and before i run out, now i can wait between 7 to 10 days and then we have to deal with Rottweiler type patient coordinators who are making decisions on my quality of life because the rules are the rules!

Its been a tough few months for all of us but i nether wish to go to a pub or shopping i simply want to wake up pain free.

To be honest i crave the days of doing the things i love but i can't my body wont allow it, i miss being a part of a music group that i have known for so long but i now have to face the fact that i may never be able to do it again because my body wont let me,

so who am i ? well i am not who i was and never will be again, for i will have to change as it changes, i will have to adapt as it progresses , so if you have your health you are a rich person indeed,

xxx

Questions to be asked

183:816584140 (Thomas Mccallum) — Thu, 04 Jun 2020 05:17:09 GMT

TRYING YOUR BEST SOMETIMES IS NOT GOOD ENOUGH

Highlighting constant failings in the system is having an effect on me, things seem to run ok for a while and then it seems to implode

Trying to be to be positive and look after my mental well being as well as my medical needs is a tough enough job without constant battles of wills with patient coordinators.

The problem arises when there is a lack of listening and a total lack of empathy or understanding of a condition, all I want to do is take my meds at the proper time and not run out.

The back story is pretty much a simple tale and easy to grasp however, at my GP surgery this seems to be the most difficult task.

I have several medications to take on a daily basis and all are on regular repeat prescription , most are prescribed on a 2 monthly rota except for one which for some bizarre reason I only get enough for 40 days, this was not a problem in the past as I would do the ordering and all was well

since Covid 19 arrived I was asked to nominate pharmacy to collect my scripts which I did... I wasn't really sure how it worked so I called and asked, they told me they would order and my next was due 19th June , I realised that I would run out of my main Parkinson's meds before that .

So I called the surgery and left a message on the prescription line and asked if I could have a return call , after a week and no call I phoned back and spoke to the patient coordinator who said it would be passed on to their practice pharmacist to be prescribed .

My brother picked up the meds to be told by the shop that the GP has only made a script out for 20 tablets so back on the phone I go to try sort this out and told that I had ben prescribed 200 only in 20th May and to checkback with the pharmacy,

Checking with the pharmacy again they assured me they had only the 20,, at this point I was extremely agitated at the prospect of running out of my main medication and experience days of symptoms.

Ok back to the doctors on the phone, the person who answered the phone looked up my records did a bit of calculating said she would get back to me after she spoke to the doctor, later that day I received a call to say they would be re starting everything afresh with all my medication in order that it all comes at the same time.

For what its worth their are major errors in their system, major failings in responses to requests for a call back in the first place, i am well aware how difficult it can be to manage things in these strange times , however i am trying to play my part by being responsible and tying to sort issues as they arise.

just to put the tin hat on it yesterday i also called to check with the Doctor to find out if it is safe for me to go back to work as i also have chronic asthma, to be told the doctor wont get involved.

I am perplexed by the whole saga, I am tired of slogging it out with people who have no understanding of this condition I find it difficult enough to speak think and communicate at times due to Parkinson's.

Thank got for the Parkinson's nurses a ray of light in a world of frustration

Lockdown Blues

183:816584140 (Thomas Mccallum) — Thu, 14 May 2020 10:42:17 GMT

Lockdown to save life's

May should bring forth hopes for a sunny and warm summer, this year has a very different outlook

we have lots of people who need shielded, and a lot of people struggling to cope with all that is going on around them and lack of socialising

.

.

And speaking on my own experiences... I have not found it so difficult of course I do miss going out whenever I chose but needs must,

My apprenticeship of 20 years living on my own taught me loads about isolation' so i have that coping mechanism

keeping on top of medication is very labour intensive right now and now takes even longer to process .

Over the month of April did a daily vlog in fact it lasted 42 days to highlight the day to day .living with a chronic illness during a pandemic ,
It was nice to see so many comments and well wishes, I learned a lot about myself allot of the time I tended to do my recording at the end of the day as I reflect apron the days issues , this seemed to cause some concern as I did receive a few messages asking if I was ok as I looked so sad unfortunately one of the symptoms of PD is that you lose facial expression over time hence the reason I looked so glum.

But under all that glum look I am still the same guy a cheeky we monkey who likes to laugh and a wind up is always on my agenda, so please don't worry as its just a mask that I have to ware its not of my choosing but its out oof my control.

during that period I struck up a few friendships with some other guys from all over the country and further afield, so much so that one of these friendships bared some fruit in the shape of a song called sing you can find it on my Facebook page and you tube channel

David Sangster is a very motivated man who also has PD , diagnosed in his early 30s and we wrote and recorded this song as well as a video all in Lockdown lookout for more soon.

David also does a one hour radio show on www.parkieradio.com as you may have guessed is mostly ran and listened to by PD people both myself and Barrie Smith had a wee chat with him on his show i will post it up on this blog and on my Facebook page.

So all we can do during this trying time is do what we can to ease the burden off each others concerns and fears just be there for each other its a tough old time and people get lost in the cracks and that's awfull

be good and take care x

A Song to end Parkinson's awareness month

Wed, 29 Apr 2020 18:33:12 GMT

A fitting end to Parkinson's awareness month

.As we come to the end of Parkinson'' awareness month it seems strange that we are in the middle of something the like of that I have only ever seen on films or read about in biblical times , Corona virus has changed our whole way of living and it has the capacity too change our life.

Over the last 2 years I would have been trying to raise awareness of PD (Parkinson's Disease ) however all those plans went out the window, quick as you like I was told to go home and sit it out for at least 13 weeks, and as from then I have been hold up at home watching the world change from my window.

We are so fortunate to have the technology to see our loved ones via face time zoom and so many more applications that does not even come close to a hug and a squeeze even though I have been on my own for so many years I miss my beautiful Susan who has to stay at home we talk and facetime but its just not the same .

Support from your peers is a very important part of coping with any physical or emotional condition and for along time it was me and my cousin who was also diagnosed around the same time.

Recently I made friends with some other PD musicians via Twitter the last place I thought there would be a support network of parkie musicians ,

I got on really well with one guy who had a good sense of humour and some similar musical tastes,

We shared some ideas of how to keep making music with a condition that restricts movement and that's how it works after hearing one of David's tracks it resonated with me so much so we decided to try put into song how we feel about PD in song and here it is A fitting tribute to all who suffer from PD.

Please help us by sharing.

During my lockdown period I have to say I was very concerned about going out so much so after 4 weeks I have just started doing an exercise hr ,who knows how long but I need to be mature and accept this is the right thing to do, I have been keeping myself busy by vlogging about my days however I believe that has had its day so I will finish up on the last day of PD awareness month .

Is this the world we created

183:816584140 (Thomas Mccallum) — Sat, 21 Mar 2020 11:44:51 GMT

We need to change

.This is day three for me , after checking in at work was told to stay home and isolate myself for my own safety, I don't know about you but Glasgow city council would never send anyone that is not sick home and on full pay. this for me was an indicator that this is serious,

in the last month things all over Europe and indeed all over the world have become so serious that some city's are under complete lockdown, we have become a society obsessed by things, statuses, job titles money and ego boosting obsessions, we created this and now we have to repair it, its ok blaming all the selfish folk for raiding Tesco's and leaving vulnerable and elderly folk with very little we also need to take responsibility for our lack of action.

I realised long ago that the real riches were people, friends family and your partner, not money and possessions however we did sit back and say nothing except point it out, we really ought to have took the time to counteract by showing more love lead by example .

if we all get through this unharmed then we are very fortunate and as such we really need to change how we treat our world, we continually rip it to shreds for its value it is no wonder that it has now had enough and fighting back.

for now I will be bunkered up until it is safe to go out, I really value my life albeit its not in fine health I still want it to continue, thank you for all the messages of support and offers of help I appreciate that and I may have to call on you for something, feel free to phone if you have some time over the next 12 weeks I have the feeling I may not be to far away,

Mini vlog

183:816584140 (Thomas Mccallum) — Fri, 13 Mar 2020 16:38:46 GMT

Mini vlog seriously short and equally as good

Just an update on whats new, you can get hold and watch my mini vlogs on this link www.youtube.com/musicthom
Where you can keep updated on everything about my Parkinson's

Let it all out

Tue, 03 Mar 2020 20:31:26 GMT

Why don't we just talk

The more i delve in the more i find out, it;s quite surreal that these nightime activities when i am supposed to be asleep are quite bizzare, the only saving grace i have is that most of the time i am unaware.
i recently got a fit bit type sports band for a birthday present and it has revealed quite some significant info on my sleeping patterns,

There are occasions when i am awake for periods of around anything from 2 mins to 45 mins and I don't remember a single thing or that is most occasions there is the odd one where I have hurt myself i tend to remember that,

Over the last few weeks i have to admit i have had a wobble here and there, on the whole I deal with this shit by being as brave as I can and it works for me but on the odd occasion it scares me, but I think that's ok and I accept that as a part of what I have, I seek out my way of dealing with those occasions by meditation , it is a natural human emotion to feel fear and to ignore it is a foolish act be assured that will come back to bite you.

My goals this year are to get a little bit fitter and leaner and finish off the music project of the 2nd album and I have every confidence that it will be done this year, I am still searching for ways of funding this by way of grants but it's an absolute mine field but I will continue to search, if anyone has and experience and fancies giving me a hand I would be grateful.

It will be coming up to the Parkinson's walk soon and if anyone would like to team up with me feel free to get in touch.

Something i have been increasingly noticing is that with complicated symptoms is that i find myself having to explain over and over why there are things i cant do now, i am not sure if its a case of me not making myself clear or is it that some people just don't listen?
Life with any disability is difficult enough without trying to repeatedly give info over and over.

Thoughts are turning to summer and feeling the sun again, winter is the pits for us parkies with all the aches and pains and not being able to walk as good can lead to cabin feever.

this week myself and my cousin Michael will be doing a vlog mine obviously on Parkinson's and he will be doing his thang on Colon cancer and it was and is quite a journey this will be well worth a viewing, it will be recorded and edited by my fair own hands another string to my bow.

This year is cure Parkinson's cup you can find out more info here www.cureparkinsonscup.com/

you could end up representing your country.

as a general rule have no problem with talking about my feelings and of course its with the people i trust, however it seems to be that I am in a minority where this is concerned, the phrase "Man up!" really annoys me because it is expected that we as a gender should be a certain way and that is a dangerous situation.

There were 784 probable suicides registered in Scotland in 2018, compared to 680 in 2017. This data is based on the new coding rules*. The overall figures for males and females in 2018 were 581 and 203 respectively. In 2018, the suicide rate for males was three times that for females.

So why is that ?

Speaking as a man who has been to the gates of hell and back action is the only answer when your pal text you at 3 am with real fear in their head you need to be prepared to to answer that text becase one day it may be you needing that help

no amount of copy paste will ever beat true honest compassion and understanding. that is the one thing that i see often and its awful

We as males need to learn that you need to let it out you need to trust someone enough to share your fears and help put it into perspective.

Support and Networking

183:816584140 (Thomas Mccallum) — Sat, 15 Feb 2020 22:18:21 GMT

Getting to know other people

Getting out to meet other peo ple who have Parkinson's is not as easy as you may think, between work and my other activities, commitments and hobbies it really leaves not a lot of time to go to groups that are situated in city centres.

Being active on most social media platforms helps so much i have come across so many parkies and made a lot of connections , its so much better to have someone to chat with about stuff. although every case is diffirent there are a vast amount of knowledge and experience out there.

Having this vile disease really limits my ability to live the life i want to, i am in no way complaining however
There are those who really don't have a clue especially when it comes to managing this condition, and yes it is my responsibility to ensure that things like medication is taken on time, we have some great people who work within the NHS who go out of their way to help as best as they can .

i know through experience that obtaining medication can be a tough job, in the last two years of taking meds it seems that a stock of my type of medication is not priority and i have spent at least 2 days chasing up prescriptions or waiting on pharmacy orders, at some points i have been down to one days supply left. this is not ideal for me.

where my particular doctors is concerned the grip on repeat prescriptions is nearly as tight as Boris on the no 10 seat so just to let you understand here is a couple scenarios.

My docs policy is, you can phone, drop off or apply online for script and after 48 hours you can collect it and that is fair and reasonable, so I am working 7,30am till 6.30 pm 4 on 4 off, best i phone as i have only 7 days left.
so i need to wait at least 6 days as that's my first day off, and their is a weekend within that so they are closed, no script because i put it in too early, by this time i have only one days tablets left, ok so the receptionist now is angry at me because i never came up early to be told that it wasn't done and could re apply and then tells me it's my responsibility to get my meds on time.

Scenario 2
I take inhalers for my asthma preventative and releaser i used to get 2 of both, all of a sudden i am limited to only one of the reliever as and i quote " we believe you use it too much " even though it is clearly marked use as required.

And to a point I have to agree.... however there are mitigating circumstances, in order for me to keep my Parkinson's under some sort of control I need to exercise and this obviously aggravates my chest. I need to use my inhaler or wheeze however this also means I run out faster than what they think it should and deem my asthma not controlled properly.

My choices are, I continue and find myself at loggerheads with staff or I reduce my walking to ease use of blue inhaler or I cut down my walking etc and suffer the symptoms of Parkinson's, you can see how this is problem, think it's about time for a frank and honest discussion with my GP.

And that is only 2 of my meds therapy, I have another 4 that are as equally important and 2 of those will not be dispensed unless I speak to the GP on a by monthly arrangement,
I think a lot of folk in the Parkinson's community have problems of this sort I believe a lack of proper education on the disease is a factor, but I need to be clear that it is a very small minority but enough to put a spanner in the works.
Right now their is a national campaign from www.parkinsons.org.uk on this very subject you can check that out if you would like to know more

Over the last few months I have been struggling somewhat with various issues, one of the problems mainly is the fact that I have been so independent my whole life and I have desire to continue, however this comes at a price when you believe that you still can when in actual fact I realise I need a hand.

So I have gotten to the point that help is needed and I am grateful for it.

As most of you that know me i am a muso and i am not ashamed to say, i love it and everything that comes with being involved in it,
but i had struggled with writing new material i believe mostly down to my changed guitar ability's and this was a problem as i am working on a 2nd album , no good idea if you have a block.

You may have noticed, (those of you who are into you're grammar) i used the words (was a problem) in that sentence because their is a eureka moment here, let me elaborate.

Last week the weather was not playing game so myself and Susan decided to have a wee night in and watch some telly, fortunately for me my Parkinson's was playing ball and i decided to pick up the guitar and have a wee strum , at this point i said to Susan lets write a song and being a good sport she agreed, see Susan is a very accomplished musician and singer and it helps me so much, we had the basics of a song within an hour, and we have been working on the harmonies and arrangement all week, i cant even express how chuffed i am, and I am so looking forward to more songs and colabs from our wee team.

There is a lesson in there for me about not giving up and i can assure you that its one i have learned.

Generally i am in good state of mind i have my off days or at times off hours but most days i can cope, don't be scared to ask me questions i won't be offended it is better when folk do it dispels some pre conceived ideas of what it is, equally don't feel the need to ask i wont be offended either.

bye for now and be good Thomas x

New blog site

Tue, 11 Feb 2020 17:21:09 GMT

New look blogs

I have taken the decision to purchase a domain and build my own web site this makes for a better way to connect with others who are in the same position as myself.

Having this site allows me to have a central point to post my blogs and of course my music and other ramblings. I found out recently that there is more help out there, it's just finding it, so I intend to pass on what I can for those who are just starting their journey, just maybe it will ease the stress a little .

For those of you who subscribed to the wix site I will be keeping it for a little while as a back up you can subscribe to this site for news letters and blogs , but I will still post up links on social media.

Thank you to all who read my blog its averaging around 90 and I feel privileged that people want to hear my story you are welcome to share or comment on anything you wish unless its offensive to others I really don't mind