Mags Chorley’s PD Story

Mags…the Narkie Parkie…waxes poetic.

A Chance to Bat

By Mags Chorley

Mags ChorleyI need to enjoy my today
Leave behind my yesterday
The past is gone
I must move on
So please forgive me if I did harm
I hope that you will find some calm
In each generation we learn
That for which we yearn
Is just the trimmings
Around our innings
Getting the chance to bat
Is more than that
Hit the ball high into the sky
Or miss it, all that matters is you try
Just be strong
And come along
Join in the game
There is no shame
No winners or losers
We are all choosers

As a PDer from the way I’ve been treated, I feel I have been placed on death’s pathway. They tell me there is no cure or treatment yet for PD, Instead they give me meds to control my PD symptoms. To reiterate, they:

  • do not treat my disease.
  • give me meds to control my symptoms.
  • follow procedures to ensure my PD condition is not cured so they can keep selling their control drugs.
  • Marshall forces to fatten me up and make me fit; forces include motivators and physical trainers and dietitians.
  • so they can keep selling drugs to help control PD symptoms, such as shakes and tremors, stiffness, and freezing.

For me, weight gain has been a PD meds side effect. My appetite returned, and I have gained about 2 stones (30 lbs).

Telling someone like me to exercise who is suffering from PD can be like telling a dead woman to breathe.

I advocate for “boots on ground” for PD treatment. Med professionals are wrong when they say treatment for PD doesn’t exist: treatment is to treat the whole person and not just symptoms, i.e. a holistic approach to treatment. We need specialist PD trainers to motivate us and teach us exercises we need, dietitians to advise on food and nutrition, with hands on training workshops for living with PD. We want a cautious approach to meds until we need them. Meds invariably introduce complications, for example, dyskenisia is one of the worst for Levadopa takers.

You may wonder why I’m so cynical and down on the medical establishment.

1st let me to tell you about my feelings about PD. To do this is like watching myself in some sort of weird film.

This person, Mags, looks like me, she lives in my home, but she thinks differently and does things differently and prioritises differently. Some of the things she does are alien to me. Some things she does are better than I’ve ever done, some things are braver and some things are just bonkers. Also she is self destructive in many ways.

This person, Mags, is brilliant at embroidery which is strange because I haven’t done embroidery since I was a child.

This person, Mags, never watches television.

Before I started on my meds I used to watch TV every night, and I never missed the soaps or worried about bed time.

This person, Mags, also writes poetry which I love, as do other people. This skill is strange because I’m 70, and I have never written poetry before in my life.

I believe this is largely because of meds I am taking to help control my PD symptoms.

However, I must admit, before my PD diagnosis and my taking PD meds, I was worse off, now I am in a much better frame of mind than I was then. My pill popping has helped.

Underpinnings of PD

York England

York

My PD related problems probably began 10 years prior in 2000 when we were living in the south of England.

My right big toe became swollen and painful. My GP prescribed a statin (usually taken for cholesterol problems). I reacted badly to the statin. He thought I might be allergic so I stopped them. When we moved to Plockinton (Plock) in 2009 my toe was feeling worse so my Plock GB, doubting if I was allergic, put me back on statin. This is how my PD roller coaster ride began.

Finally Learn I have PD.

Road to Plockinton

Road to Plockinton

In 2011 when my tremors first started I went to a general practitioner who had limited PD experience. I was scared about what he may say. He assured me I shouldn’t be concerned because it was probably a benign, non-progressive condition.

(As mentioned in an earlier PD post, diagnosing PD without lab work is a challenge because many diseases/conditions mimic PD, such as Lewy body dementia, progressive palsy, Alzeihmer’s.)

My GP referred me to hospital for various tests to rule out other possibilities, and, when the test came back negative, he decided that it most likely was a benign essential tremor. (Essential tremor is a PD like tremor, but is not associated with cognitive decline.)

Mags House

Mags House

In the meantime, I was doing my own internet research, but I couldn’t bring myself even to consider PD, the diagnosis I dreaded the most. Most of my research was about benign essential tremor and other possibilities.

A year of false alarms about my condition finally convinced me I probably had PD.

I became depressed about that eventuality, this weakened me and I could only do necessary chores. In the meantime I began suffering from migraine headaches. Nevertheless, I did push myself to do short walks.

About this time I became to experience PD symptoms besides shaking and swaying. When visited by a friend, I was having balance issues, and I wobbled and laughed

MC…”I think I’m drunk.

Friend…”Looks like it.”

By this time I had most PD symptoms, but I was still in denial

I considered my depression, tiredness, energy as personal flaws.

In 2011 as my tremors worsened, I asked my GP if he would refer me to a movement specialist. Movement specialist ordered a dat scan. and this test confirmed my suspicion.

I had PD.

By this time it was more of a relief than a shock. My GP prescribed Ripinorole to treat some PD symptoms. I was started on a low dose that was gradually increased. I suffered from nausea and sleeplessness for weeks until my body could tolerate the drug.

I began to feel much better. I felt happy, energetic and I looked forward to my everyday life. I was still shaking but apart from that and some aches and pains I was happy.

Another bonus, Ripinorole stopped my migraines, which had plagued me for 20 years.

I was over the moon about that, and I was generally happy about the difference Ripinorole made to my life; I still feel that way. However, I began experiencing a down side, I’ll go into later.

Granted, since my PD diagnosis, life has been easier for me. As they say, knowledge is power. I knew what was wrong with me, and I could tell my friends what was wrong. I regained confidence. I said to myself …”I can handle this.”

Moreover, my husband knew better how to help me.

Before that I was in a struggle…feeling depressed and miserable not enjoying my life, coping with migraines. In short, going against every bodily instinct just to function.

Mags on TrikeI took to riding a 3 – wheel bike (a trike), because poor balance kept me off a bicycle.

Now I would say I’m a 70-year-old woman with the emotional intelligence of a 17-year-old.
In fact an average 17 probably is more mature and calm than I am now.

One PD challenge, you have PD a number of years before you have recognisable symptoms.
This means for a number of years before your diagnosis your personality gradually is changing.

PD is a double whammy because, besides shakes and tremors, it affects your brain, emotions and personality; you become a person you don’t recognize.

I sit at my computer and recite poetry in front of the camera and then transcribe it online. I would never have done this before.

So where does this leave us?

This is when I get angry about my med induced circumstance. Meds such as Ripinorole have side effects.
Many on this medication suffer from addictive behavior, and repetitive compulsive behavior, even hyper sexuality and gambling to extent that marriages are destroyed, homes and mortgages lost.

Like most addictions, when your body gets used to a certain dosage, you need more of it to get the same effect, and then the upward spiral continues uncontrollably, until at the extreme…the drug kills you.

Mags Chorley waxes poetic again.

Hey guys, let’s go walk,
I really need the chance to talk,
‘Bout somethin’ that troubles me,
Really need your company,
‘Cause I’m a nothin’
Talk’in ’bout somethin’
Tryin’ to make sense,
Of this is intense,

I add up the stages to fight our plight,
Please check this through,
Cause if I’m right,
We got to unite,

The answer is, we need a 4,
Stick around cause I’m not sure,
Did I add it up wrong,
My maths were never strong,

Thousands of people Fund raising and donating,
All that they can for cure scientists are researching,

The problem is this,
the cures hit or miss,

Even If achieved,
Only the rich be relieved,
Of their pain and suffering,
Cause it will come with a price,
That will ensure our demise,

The calculation is this,
2+2+2=6
But
2+2=4
The rich already have 4 so they just need 2 more,

We are at 2 but we need to be at 4,

2 is the fact that we are willing to act,
Plus 2 more would open the door,
To a better quality of life ,
This is precise,

Fact is you cannot jump from 2 to 6,
Quality of life is part of the mix,
If you want to have a life ensured,
Or even if there is no cure
4 equals = in the main we are as healthy and fit as can be,

Check my calculation;
2 equals = we are willing to act
4 equals = in the main we are as healthy and fit as can be

You cannot jump form 2 to 6
Without # 4,
You cannot get in the door,

So do not be deluded,
Get to 4,
Before you do more,
To get to 6.

“Cause I’m a nothin’
Talk’in ’bout somethin’
Tryin’ to make sense,
Of this is intense,

I add up the stages to fight our plight,
Please check this through,
Cause if I’m right,
We got to unite,

The answer is, we need a 4,
Stick around cause I’m not sure,
Did I add it up wrong,
My maths were never strong,

Thousands of people Fund raising and donating,
All that they can for cure scientists are researching,

The problem is this,
the cures hit or miss,

Even if achieved,
Only the rich be relieved,
Of their pain and suffering,
Cause it will come with a price,
That will insure our demise,

Mags Chorley in Protest

I have always been angry about injustice, but now because of my PD experience, including aftermath of meds, I am labeled as unstable by my so called “friends” on Facebook.

I’m looking for answers from the charities and NHS to United Kingdom (UK).

I am impatient, I have a working brain that thinks. I don’t blindly give “yes” or “no” responses to official statements.

Here are some excepts from a letter I sent to the Chief Medical Office of my clinic.

“I believe professional establishments disagree about PD. Some say we don’t die from PD, rather, we die with it from PD complications. I believe Parkinson’s Disease UK Charities  has taken this position.

According to PD stats submitted to WHO, annually the UK has about 4,950 total PD deaths, 2,970 male and 1,980 female, making it one of UK’s leading causes of death.

No doubt, the medical profession is now aware that meds is only a part of PD treatment. I would say exercise and diet should account for about 2/3’s of PD treatment. Given this, I would expect NHS would ensure personal trainers are available to take PDers to gyms outfitted with machines that would benefit PD patients. Moreover, I would expect each local area would have a centrally placed medical center that would provide brochures and personnel who would recommend PD specific exercises, nutrition and diet.  This kind of comprehensive outreach should save NHS $$$ in long run as PDers would stay healthier longer.

Mags & FriendWhen I was 48 and working as a community outreach worker, my severe migraine headaches began, which I now suspect were PD related.

My migraines forced early retirement at 50.  My pension did not cover my expenses, and I was forced to down size my house to a little terraced home and take part time jobs.

I worked part time at Shaffield College to develop links from the community to the college in terms of course offerings and programs. I developed training manuals for sexual abuse workshops at Shaffield.

Because of my PD experience, including aftermath of meds, I have become an angry and cynical woman. I’m looking for answers from the charities and from the NHS in UK.

Mad WarriorMaybe others across the PD world can relate to this dilemma. Why do we accept that we are receiving treatment for PD when in fact, we are not getting treatment for PD? Treatment we are getting are for PD symptoms.

To be frank, we are not even getting treatment for PD symptoms in the sense that these symptoms still lurk beneath the symptom-surface. While they may work as long as we take them, they don’t leave us symptom free.

What we are receiving are meds that mask PD symptoms, and we need to ask…”At what cost are PD symptoms masked.” Dyskenisia is one cost. This is laughable, you now need meds to control dyskenisia, and so the beat goes on.

Why do we not receive meds that CURE PD?

We know specialised dietary and movement regimes can be prescribed, especially formulated for PDers that help us reach a decent quality of life. But we face a lifetime of staying on course.

Other issues:

  • …Charities seemingly are trying to understate the mortality effect of PD. We hear statements to the effect that we don’t die from PD, but from other death causes. But we die from PD, and yet big charities lie to us. Stats exist on PD deaths to prove it. These stats are in clinic and hospital medical records.
  • …Why are big Charities spending $$$ on finding a “cure,” when this quest is way premature. They do not even know the cause or causes of PD. They describe ad nauseum the “how” (diagrams and the like) but not the “why.”

Thus, the PD cure is a long way off and not guaranteed.

Why not spend more $$$ on helping PDers here and now with the knowledge we already have.

We need a special healthy lifestyle regimen supplied and supported by health services in the UK and thoughout the world. We know this regimen. We know it would be an immediate benefit to PDers.

Don’t they realise that by only spending $$$ on research for an elusive cure…some of these $$$ are raised by PDers who then are unable to buy a healthy lifestyle with specialist support and input…they are sacrificing the lives of the poor for the sake of the rich.

…Now I’ll expose my cynical side. I argue that big Pharma is not interested in finding a PD cure. They prefer providing drugs to control symptoms (Carbadoba/Levadopa), followed by graduation to a dyskenisia drug, rather than drugs to provide a one-time cure. Simply stated, the bottom line focus targets drugs that PDers would take for a life time.