About Parkinson’s – Fight Parkinsons

About Parkinson's

Would you buy a house, unseen, just because the real estate agent said it was a good buy? No, you’d check out its location and you’d definitely have it structurally surveyed. After all, it is a major, life-changing purchase. You shouldn’t treat your health any differently.

My recommendation is that you apply the same analytical approach to your Parkinson’s diagnosis. Before accepting the doctor’s opinion that Parkinson’s is a degenerative, incurable condition leading to severe disablement, and before commencing the recommended medication, stop and take the time to research the full picture.

I receive many emails from people feeling they’ve been deceived by their doctors who, when proposing medication, omitted to tell them that their medications:

Will do nothing to hold back the progression of their disease and its symptoms

At their best, will only help with some symptoms, whilst bringing no beneficial effect to other symptoms

Can induce many symptoms (which you’d think the medications should be there to prevent!). These symptoms are benignly termed ‘side-effects’ but, make no mistake they are symptoms.

Induce ‘on-off’ effects. ‘Off’ effects are when, between doses, the drugs lose any effectiveness often leaving the person unable to function properly. I am told that there’s nothing quite as bad as the ‘off’ spells, which are impossible to explain.

After a period of years, sometimes as few as 3 or 4, may cease to have any effect at all, leaving them at the mercy of their disease. By this time, the neurological damage may be too great to expect any improvement from pursuing other, non-medication, approaches.

To help you in this, in ‘About Parkinson’s, I’ve set out what lies ahead if you proceed with medication. This information is the accepted wisdom drawn from authoritative medical and Parkinson’s charity websites.

Just bear in mind, that About Parkinson’s pages are simply reporting the consequences of following the pharmaceutical route. The rest of this website is devoted to the naturopathic medicinal approach, which seeks to establish the causes and then take restorative actions.

The Stages of Parkinson’s

By following the conventional medical approach, you can expect to go through what healthcare professionals call the different stages of Parkinson’s. These are set out below.

Before you go there though, bear in mind that there are people who have elected to take responsibility for their Parkinson’s, pursued naturopathic medicine therapies and are living well with controllable symptoms.

In the meantime, their peers, who have followed the route recommended by their medical doctor, have rapidly gone through the first two stages and have reached or are approaching the Advanced Stage.

The Four Stages of Parkinson's

Early Stage

This is when initial symptoms become apparent and a person receives their Parkinson’s diagnosis. Symptoms are customarily mild and there should be little or no requirement for medication. However, increasingly doctors are prescribing medications, especially levodopa, from the very outset. This is now proposed as the drug of first resort whereas, once, it was considered the medication of ‘last resort’.

Middle or Maintenance Stage

Symptoms have begun to multiply but may still being controlled, to some extent, by medication. However, that control is rarely total and symptoms increasingly encroach upon your quality of life. Your doses of medication will likely be increased as lower doses will be less likely to be effective in controlling your symptoms.

Advanced Stage

Generally, the time when symptoms have multiplied either through the disease’s progression or through continued drug use. Your medication will likely have been increased substantially and you’ll possibly be experiencing ‘off’ spells when the medication ceases to be effective between doses.

The symptoms are more likely to be having an impact and medication becomes less effective. The side effects of the Parkinson’s drugs may be far outweighing their benefits.

You may find you need assistance with certain tasks, such as washing and dressing.

Latter Stages

Parkinson’s has by and large taken over control of your body, and you need care and assistance for most daily activities. The best that doctors can do now is to try and provide relief for your symptoms and the pain of the condition.

How long in each Stage?

There is no typical timetable. Some people stay in the early stages for years. Increasingly, though, whether through lifestyle or as a consequence of medication, or a combination of both, people are reaching the latter point of Middle Stage or the early part of Advanced Stage within 4 or 5 years of diagnosis.

It is worth considering that changing lifestyle, adopting a new diet and pursuing naturopathic medicinal therapy could reverse symptoms and hold back the disease’s progression for a considerable time, if not for all time. When you consider the foregoing, you may conclude that you have little to lose.

Parkinson's symptoms

There are typical symptoms which present themselves at the early stage, and upon which a Parkinson’s diagnosis is made.

Then there are symptoms which develop over time which may be as a result of Parkinson’s progression or the impact of medications.

Either way, despite the use of medications, symptoms multiply and worsen over time for the majority of people.

Early symptoms

The following are the typical symptoms present when we become aware that something is not quite right. The initial symptoms are not confined to this list, but these give a good clue that Parkinson’s issues are in play.

Muscle Rigidity and Pain. Typically in the back or shoulder area, but not necessarily confined to those areas.
Loss of Functionality in a Hand. This is usually the loss of fine motor movement and control. An example may be that doing up a button becomes problematic.
Arm Ceases to Swing when walking.
Foot drags when Walking. You may not be aware of this, but others may observe it.
Slowness of Movement, in the affected arm or leg.
Handwriting becomes Awkward and Shrinks.
Shaking in a Limb. A tremor is what we typically expect to indicate Parkinson’s, but this may not necessarily be present at the early stage.

Symptoms which develop

“Parkinson’s” is an umbrella term for a whole range of neurological symptoms, which may affect one physically or mentally. This means that people can have any combination and severity of symptoms and why it is said ‘no two people have the same Parkinson’s symptoms’.

Symptoms can progress at varying speeds

The following is a list of symptoms or conditions which we have seen in people with Parkinson’s. These may be a result of Parkinson’s progression or the consequence of medications, but they are seen to be present.

External Tremor Ranging from a minor tremor in a hand to fairly violent shaking of the entire limb. Stressful situations can trigger the tremor or make it worse.
Internal Tremor Less easy to describe, but when you’ve got it, you’ll know. Feels as though your insides are shaking.
Slowness of movement Your hand or leg moves much more slowly. This is termed bradykinesia.
Rigidity (stiffness) Accompanied by severe pain. May lead to real difficulties rising from a chair or getting out of bed. Can place a big restriction upon any kind of movement.
Arm swing Arm(s) hangs limp and refuses to swing when walking
Inability to write Acute difficulty to write by hand. Letters shrink to micro-size as word or sentence is written
Shuffling when walking Feet shuffle rather than step out using heel. Can cause falls.
Stoop When standing or walking.
Freezing Typically occurs when walking, when the feet feel as though they’re glued to the floor. Freezing, though, can occur during any activity.
Urinary incontinence Sudden and uncontrollable urge to urinate
Constipation Chronic inability to empty bowel. Often means not sensing that need to go to the toilet.
Loss of balance Sudden and uncontrollable loss of balance, causing falls.
Dizziness Often occurs when rising from a sitting position
Loss of sense of smell/taste
Brain fog May best be described as feelings of mental confusion or lack of mental clarity, though ‘fog’ is as good a description as any.
Anxiety Acute anxiety surfaces, even in people who have always had self-confidence.
Depression Feelings of extreme sadness or emotional emptiness. Much more than temporary feelings of sadness or unhappiness.
Apathy Feeling of ‘what’s the point?’ and unable to motivate oneself to do anything. Very frustrating for those close to the person.
Insomnia Chronic sleep issues dog many Parkinson’s people. Lack of sleep contributes to other symptoms.
Restless Legs Syndrome Occurs whilst resting, and a big bedtime issue, disrupting sleep. Tingling, itching, burning, throbbing etc which creates overwhelming urge to move legs.
Vivid Dreams Vivid, violent dreams or nightmares can often end with the person waking and finding themselves out of bed.
Cognitive decline and Memory issues, may be a start towards dementia
Confusion Suffers from mental confusion
Speech Soft voice, husky or hoarse. Can develop into more severe condition of slurred speech and inability to pronounce words clearly enough to be understood.
Facial Expression Blank, expressionless face (mask) which misleads others to misunderstanding your true feelings.
Swallowing Chewing, swallowing issues. Food sticking in throat.
Drooling Uncontrollable dribbling from mouth
Weight Loss Losing weight, no matter how much you eat, often to alarming levels.
Temperature regulation Inability to tolerate heat or cold, which results in temporary exaggeration of symptoms
Hallucinations Different types of hallucinations. Can involve seeing, hearing or sensing things that aren’t there or differently to what they are.
Delusions The can include paranoia, jealousy, or believing you have super powers.
Pain Different types of pain from a deep or dull ache to shooting pain, affecting any part of the body (muscles, joints, limbs, etc)
Eyesight Anything from double-vision, dry eyes, blurred vision, difficulty moving eyes, and involuntary opening/closing eyelids
Dystonia (writhing) Movement disorder resulting in muscle spasms and abnormal posture.

Dyskinesia Movement disorders that are characterized by involuntary muscle movements, including jerky movements and diminished voluntary movements.
Stress Inability to handle even minor stressful situations and which exacerbates symptoms, at least temporarily.
Fatigue This ranges from the requirement to take frequent naps to chronic fatigue and being devoid of all energy.

How do you deal with these symptoms?

This is where you are faced with a choice.

Medications generally come at a price; that being they have side-effects which, in many cases, are equally as unpleasant as symptoms they are trying to control. For a number of the above symptoms there is no medication available.

Alternatively, you can explore this website for therapies which research shows can have a considerable impact on the underlying Parkinson’s condition and individual symptoms.

Medication Outcomes

The medication outcomes you can expect

Medication outcomes

The conversation usually goes like this:

Doctor: “I can confirm that you have Parkinson’s. I’d like to start you on this medication for your symptoms.”

You end up agreeing, after all, what do you know that the doctor doesn’t? And so you’re up and running in the lottery stakes of Parkinson’s medications.

At your next visit or two, you’ll bring to the attention of the doctor other symptoms which have surfaced, and he’ll either increase your dose or try an additional drug. So it goes on, with each time you arrive at the clinic in a worse state, only to find that your doctor has less and less answers.

What’s rarely said

Rarely, if ever, are doctors honest with you about Parkinson’s and medications from the outset. They don’t tell you that they are not omnipotent, that they’ll do their best, but medications only partially help with some symptoms, whilst doing nothing for others.

They don’t tell you that these medications will do nothing to hold back the progressive degeneration of your nervous system. That eventually drugs will no longer provide any assistance and you’re at the disease’s mercy.

Abandoned in a cul-de-sac, with no way out

I receive emails from people who find themselves trapped in a cul-de-sac, with seemingly no way out and with their doctors saying there’s nothing more they can do.

I took one look at the ‘side-effects’ of medications and asked myself the question ‘why would I take something that causes the very symptoms it’s supposed to stop?’ From that moment on, I started my research into better, alternative ways of treating my symptoms and halting my disease’s progression.

A better way

How much better it would be if the full picture of the future was spelt out clearly from the beginning, so that you knew the very limited effectiveness of drugs the doctor can prescribe and the attendant risks to you that accompany them.

Rather than start out by realizing that your doctor actually has all the answers, you then might then be prepared to explore alternative ways to deal with your Parkinson’s. Here are two BBC podcasts around this topic.

BBC Podcast Medication Made My Dad A Gambling Addict

Dopamine How It Can Cause Havoc

It’s never too late

Ideally, as soon as you’re diagnosed, you’ll explore these pages and understand what might be causing your Parkinson’s. You’ll also see the range of actions you might take to remedy those causes.

It’s never too late though, because we’ve also found therapies which have helped people lead a better quality of life, even though they’re at an advanced Parkinson’s stage. You’ll find these therapies on these pages, too.

Conventional treatments in medication – Little change in 30 years

The primary conventional treatments for Parkinson’s are medication. Although there have been some changes to drugs, the protocol has barely changed for 30+ years.

There have been no significant advances, and the disease continues to progress despite medication. All Parkinson’s medications carry significant side effects and, quite often these can outweigh the drug’s benefits.

Hardly a success story, and there’s no sign of any medication which will improve upon this sorry state of affairs.

Main drug treatments for Parkinson’s

Levodopa
Dopamine Agonists
Glutamate Antagonist
Anticholinergics
COMT Inhibitors
MAO-B inhibitors

Surgical Interventions

Surgery is used to treat people whose symptoms can’t be controlled by medication. Not everyone will be suitable for surgery. The main type of surgery, Deep Brain Stimulation Surgery (DBSS), is used to treat the physical symptoms of Parkinson’s.

DBSS involves implanting fine wires, with electrodes at their tips, into the brain. The wires are connected to a pulse generator (a kind of pacemaker) implanted around the chest area. Electrodes deliver high frequency stimulation to the designated area of the brain. This is explained very well in a Parkinson’s UK Booklet (PDF)

Anticholinergics

Anticholinergics – for resting tremor rather than stiffness

Anticholinergic medications block the action of acetylcholine, a chemical messenger that helps to send messages from your nerves to your muscles.

They are used more for the treatment of resting tremor than stiffness and slowness of movement. Anticholinergics are usually reserved for the treatment of tremor that is not adequately controlled with dopaminergic medications.

Generic drug names and brands

Orphenadrine (Biorphen, Disipal)
Procyclidine (Arpicolin, Kemadrin)
Trihexyphenidyl (Broflex)

Side effects

The NHS website for Orphenadrin states the following potential side effects:

Common

Dry mouth
Eye or eyesight problems
Feeling dizzy
Gastrointestinal problems

Uncommon

Confusion
Convulsions
Difficulty sleeping
Euphoria
Faster heart rate
Feeling nervous
Hallucinations
Hypersensitivity reactions
Sedation
Urinary retention

For more information

The Parkinson’s UK website has excellent information on anticholinergics click here

COMT Inhibitors

COMT Inhibitors – Deliver more levadopa to the brain

COMT (Catechol-O -methyl transferase) inhibitors such as Entacapone and Tolcapone may be used to increase the peripheral half-life of levodopa, thereby delivering more levodopa to the brain over a longer time. COMT inhibitors do not help Parkinson’s on their own – they have to be used with the drug levodopa.

COMT inhibitors reduce Parkinson’s symptoms by blocking an enzyme that breaks down levodopa, prolonging its effect. When used with levodopa, COMT inhibitors can reduce the daily ‘off’ time and increase the ‘on’ time. In many cases, the dose and frequency that levodopa is taken can also be reduced.

Generic drug names and brand names

Entacapone (Comtess)

Side effects

The NHS website for Comtess, a standard COMT drug, states the following potential side effects:

Very common

Nausea
Problems controlling movement
Reddish-brown discolouration of urine

Common

Abnormal muscle movement
Confusion
Constipation
Diarrhoea – seek medical advice if you have diarrhoea
Difficulty sleeping
Dry mouth
Falls
Feeling dizzy
Hallucinations
Heart problems such as Angina
Hyperactivity
Stomach pain
Strange dreams
Sweating
Tiredness
Vomiting
Worsening of Parkinson’s symptoms

For more information

Go to the Parkinson’s UK page on COMT Inhibitors – click here

Dopamine Agonists

Dopamine agonist drugs act like dopamine to stimulate your nerve cells and can be used at any stage of treatment.

Agonist drugs can be used:

As a single therapy to improve symptoms in early disease
As adjuncts to levodopa in patients whose response to levodopa is deteriorating
In those who are experiencing fluctuations in their response to levodopa.

Dopamine agonists are effective to treat motor features of early PD, and they cause less development of motor fluctuations and dyskinesia than levodopa.For patients with motor fluctuations on levodopa, the addition of a dopamine agonist reduces off time, improves motor function, and allows lower levodopa doses.

Generic drug names and brand names

Pramipexole (Mirapexin)
Ropinirole (ReQuip)
Rotigotine (Neupro)
Apomorphine (APO-go PEN, APO-go PFS)

Side effects

The listed potential side effects for Ropinirole, a standard agonist drug, are:

Very common

Nausea
Vomiting

Common

Fainting or brief loss of consciousness
Feeling dizzy
Feeling nervous
Sleepiness – this may be excessive or occur very suddenly at any time of the day
Stomach pain
Tiredness
Vertigo

Uncommon

A drop in blood pressure on standing or sitting up
Confusion
Hallucinations
Lowered blood pressure

Very rare

Abnormal laboratory test results
Liver problems

Frequency unknown:

Angioedema
Behavioural changes such as an urge to gamble, to buy or to shop, increased libido, Hypersexuality.
Hypersensitivity reactions
Itching
Skin rash or rashes
Unusual increase in appetite or binge eating. You or your carer should seek medical advice if there are any changes to your behaviour
Urticaria
Worsening of the symptoms of restless legs syndrome

For more information

The Parkinson’s UK website is very helpful click here

Glutamate Antagonist

There is a single glutamate antagonist that can be prescribed to treat Parkinson’s symptoms. It’s not used very often and is most likely to be given along with other Parkinson’s drug treatments. It’s exact mechanisms are not known. It may modify levels of certain chemicals in the brain.

Generic drug names and brand names

Amantadine (Symmetrel)

Side effects

The listed potential side effects for Amantadine are:

More Common

Agitation, anxiety, or nervousness
Difficulty concentrating
Headache
Irritability
Loss of appetite
Nausea
Purplish red, net-like, or blotchy spots on the skin
Trouble in sleeping or nightmares

Less common

Blurred vision
Confusion
Difficult urination
Dizziness or light-headedness
Fainting
Seeing, hearing, or feeling things that are not there
Swelling of the hands, feet, or lower legs

Rare

Convulsions (seizures)
Decreased vision or any change in vision
Difficulty in coordination
Fever, chills, or sore throat
Increased blood pressure
Increase in body movements
Irritation and swelling of the eye
Loss of memory
Mental depression
Severe mood or mental changes
Skin rash
Slurred speech
Thoughts of suicide or attempts at suicide
Unexplained shortness of breath

For more information

The Parkinson’s UK website is very helpful – click here

Levodopa

Levodopa is probably the main drug prescribed for Parkinson’s symptoms. It’s converted into dopamine in the brain, replacing the dopamine lost with Parkinson’s.

Brand Names

Sinemet
Madopar
Stalevo

Taking levodopa is not without its problems.

Levodopa and protein

For many people, protein (found mainly in meat, fish, eggs, cheese and beans) can interfere with the effectiveness of levodopa medication. The protein can compete with an enzyme and prevent the drug being absorbed by the body.

This may be overcome by taking the medication well away from meal times, especially as protein is an important component of a healthy diet.

On and off periods

People taking levodopa commonly experience On and Off periods between doses. When they are On, ie when their medication has taken effect, their symptoms may be controlled.

However, the dose can wear off, and during the ‘Off” periods and before the next dose takes effect (‘kicks in’) life can be very unpleasant.

It’s not uncommon for ‘Off’ spells to be 1½ or 2 hours in every 4.

Dyskinesia

Dyskinesia or involuntary muscle movements, including jerky limb movements, often become a feature of long-term levodopa use.

Dystonia

Dystonia is a movement disorder characterised by a sustained involuntary contraction of the muscles causing the affected part of the body to go into spasm.

In Parkinson’s, dystonia is commonly associated with the ‘Wearing Off’ of the effects of levodopa containing medications (i.e. Sinemet, Madopar or Stalevo), in which the drug treatment becomes less effective before the next dose of the medication is due. This effect is known as ‘Off’ dystonia and can often occur in the morning on waking up. A person can experience painful muscular spasms and may be unable to get out of bed until the morning’s dose of medication begins to take effect.

Dystonia in PD can also be associated with the action of levodopa itself as the medication reaches its peak effectiveness. This is known as ‘On’ dystonia and is caused by too much dopamine in the brain over-stimulating the muscles.

Side effects

When you look through these side-effects, you’ll soon see a similarity between these and Parkinson’s symptoms. Also, this seems an awful lot of side-effects for a medication that is supposed to be relieving symptoms. And levodopa is called the ‘Gold-standard’ Parkinson’s drug!

Common side-effects

Abnormal muscle movement
Chorea (jerky involuntary movements affecting especially the shoulders, hips, and face)
Confusion
Depression
Difficulty sleeping
Dry mouth
Feeling dizzy
Hallucinations
Loss of appetite
Nausea
Sleepiness – this may be excessive or occur very suddenly at any time of the day
Strange dreams
Vomiting
Weakness

Less common

- A drop in blood pressure on standing or sitting up
- Abnormal gait
- Abnormal laboratory test results
- Angioedema
- Balance or coordination problems
- Behavioural changes such as an urge to gamble, to buy or to shop, increased libido, hypersexuality, an unusual increase in appetite or binge eating.
- Bitter taste
- Blood and bone marrow problems
- Blurred vision
- Breathing difficulties
- Burning sensation of the tongue
- Changes of pressure in the eye
- Changes to weight
- Chest pain
- Constipation
- Convulsions
- Dark coloured saliva, sweat or urine
- Dementia
- Diarrhoea
- Dilated pupils
- Double vision
- Euphoria
- Extrapyramidal side effects
- Eyelid spasm
- Fainting or brief loss of consciousness
- Falls
- Feeling agitated, anxious, numb, disorientated or stimulated
- Flatulence
- Flushing
- Gastrointestinal problems including ulcers or pain
- General feeling of being unwell
- Hair loss
- Headaches
- Heart problems
- Hiccups
- Hoarse voice
- Horner’s syndrome
- Hot flushes
- Increased salivation
- Increased sweating
- Indigestion
- Itching
- Lowered blood pressure
- Lowering of mental acuity
- Malignant skin cancer
- May affect the results for certain tests
- Muscle cramps
- Muscle twitching
- Neuroleptic malignant syndrome – this may occur when drug is stopped abruptly or if doses are reduced too quickly. Symptoms include muscle stiffness, increased body temperature or changes to mental state
- Oculogyric crisis
- Oedema
- Palpitations
- Paraesthesia
- Periods of time where physical movement is slow or where there is a sudden change from good symptom control to poor symptom control
- Phlebitis
- Priapism
- Problems controlling movement
- Psychosis or psychotic-like behaviour including delusions or paranoid thoughts
- Raised blood pressure
- Skin rash or rashes
- Spasms of the jaw muscles
- Swallowing difficulties
- Teeth grinding
- Tiredness
- Unexplained or easy bruising of the skin or mucous membranes
- Urinary incontinence
- Urinary retention
- Urticaria
- Worsening of tremors

The Parkinson’s UK page on levodopa is worth taking a look at too.

MA0-B Inhibitors

MAO-B Inhibitors – What do they do?

MAO-B (Monoamine oxidase – B) inhibitors such as rasagiline and selegiline provide symptomatic benefit as a monotherapy in early disease and as adjuncts to levodopa in patients experiencing motor fluctuations.They prevent the breakdown of the chemical messenger dopamine in the brain, by blocking an enzyme that breaks it down, called monoamine oxidase type B (MAO-B).

They are used to make levodopa last longer or reduce the amount required.

Generic drug names and brand names

Rasagiline (Azilect)
Selegiline (Eldepryl, Zelapar)

Side effects

The NHS website for selegiline states the following potential side effects:

Very common

Inflammation of the mouth

Common

Abnormal laboratory test results
Abnormal muscle movements or problems controlling muscle movement
Back pain
Balance problems
Blocked nose
Blood pressure changes
Confusion
Constipation
Depression
Diarrhoea
Falls
Feeling dizzy
Hallucinations
Headaches
Increased sweating
Joint pain
Mouth ulcers
Muscle cramps
Nausea
Sleeping problems
Slower heart rate
Sore throat
Tiredness
Tremors
Vertigo

Uncommon

A drop in blood pressure on standing or sitting up
Ankle swelling
Blood problems
Blurred vision
Breathing difficulties
Chest pain
Dry mouth
Faster heart rate
Feeling agitated
Feeling anxious
Feeling irritable
Hair loss
Heart problems or worsening of heart problems
Loss of appetite
Mood changes
Myopathy
Palpitations
Pharyngitis
Psychosis or worsening of psychosis
Skin problems
Strange dreams
Urinary problems

Unknown frequency

Behavioural changes such as gambling, binge eating, shopping or other compulsive or repetitive activities
Hypersexuality
Libido increased
Thinking problems
Urinary retention
Worsening of peptic ulcers

For more information

Go to the Parkinson’s UK page for more information click here