Parkinsons: how to detect it and why an early diagnosis is helpful
Over the years many have seen me for joint pain or stiffness that is, unfortunately, caused by an undiagnosed neurological movement disorder (NMD).
Most NMDs do not have one simple diagnostic test. A diagnosis can require an aggregate (or a number) of symptoms. Many practitioners, including specialists, are, understandably, unwilling to commit to an early diagnosis. This appears to be the case with the 46th president of the USA.
A common NMD disorder is Parkinson’s Disease (PD). PD creates a range of symptoms that can roll out gradually, almost undetectably, for a number of years.
Later stage PD symptoms include tremor (shakiness), stiffness and a shuffling walk. These are not, always, early symptoms.
Early symptoms:
Early symptoms can be easily overlooked. Physical tests include the ability to make several quick finger to thumb circling actions and rapid up/down ankle movements. Neuropsychological tests might pick up cognitive decline. However, these tests can be ambiguous early on.
Some, in their mid 50s or early 60s, are running, skiing, bike riding and/or holding down challenging jobs when they first detect subtle changes that only they, or those very close to them, can notice.
These early slight symptoms can come and go. Some might only show up under stress or when tired.
Watching patients walk down the long corridor in the Community Health Centre or through the garden in my home practice, after a long physio session, and/or repeat back to me the ONE exercise I had just spent ages teaching them, or get out of a low chair when tired, can be more revealing than an office test.
Parkinsons affects many areas of brain and body function.
Three or more of the following together could (but not definitely) suggest early-stage PD:
1. Depression, anxiety, forgetfulness and mood changes/swings can precede movement changes.
These symptoms might only be noticeable at the end of the day or when tired or stressed.
End of day tetchiness or confusion is described as sundown syndrome.
The first I suspected a problem with a lovely long-term client, seeing me for hip stiffness, was the inability to learn a simple exercise followed by an uncharacteristic angry out-burst when I suggested further investigation was needed. That was their last visit. It was only when they were no longer able to run, four years later, that they finally saw a neurologist. Their partner kindly contacted me to let me know the diagnosis.
2. Difficulty learning and/or remembering tasks that were once easily remembered. The ability to plan might be gradually lost. Many can hold down challenging jobs but are using old, well-honed skills. New or complex challenges can provoke anxiety.
3. Chronic constipation is an early, often overlooked, sign.
4. A still face. Parkinson’s mask face is familiar: the smile or laugh is there but other features lose animation. However, I missed detecting Parkinson’s in an old friend because it was the only physical change for a number of years.
A dry mouth. There can also be a tendency to leave the mouth open and/or dribble.
5. The voice becomes softer and harder to hear
6. Loss of balance. This might show up, for fit walkers, as the occasional uncharacteristic fall on a tricky, uneven path at the end of the day.
7. Posture and walking:
· A very slight shuffle. Physical symptoms usually start asymmetrically (on one side more than the other). For example, one foot might slightly scrape the ground when walking. Running might remain normal.
The following are common with age and/or are normal for some, but changes can be an early sign:
· The feet hit the ground flat rather than heel first, as is normal.
· Steps are smaller. Knees stay slightly bent rather than stretch out as is usual with a larger stride. This can lead to ankle knee or hip stiffness
and/or
· Loss of arm swing and trunk rotation when walking. Arms hang in front of the body, rather than swing at the sides
and/or
· Increased slumping and a slight lean forward
8. Difficult to treat joint /spine pain and stiffness. This can affect one joint at a time.
9. Problems initiating, stopping or changing directions when running or playing sport.
It can be harder to get up from a low couch. This is different to the common stiffness most feel after getting up. A colleague reported that the first sign in one patient was that, despite skiing well, they could not get off the ground as easily as usual after a fall.
10. Slight rapid unnecessary steps when altering direction or when trying to get going. This is called festination. It might not be apparent to untrained observers.
11. Loss of smell: not to be confused with Covid symptoms.
12. Hypotension: this can cause blackouts.
13. Unusual exhaustion at the end of the day or after playing sport.
14. Transient ischaemic attacks (TIAs). It is uncertain if these mini strokes are a cause or are an effect of PD.
15. Urinary urgency, leakage and urinary tract infections.
16. Sexual dysfunction
17. Muscle dystonia: a painful cramping in one or more muscles. In the Foot, the toes can curl inwards. It can be most noticeable in mornings.
18. Restless legs and sleep disturbances.
19. A grab bag of skin changes including dryness OR extra oiliness, and changes to temperature regulation which can cause sweats
20. Changes in writing
It can become smaller and cramped OR
Slower OR
Tremor or dystonia can affect writing
Yes : there are a lot of symptoms. Most of them are common with age and, (to repeat), on their own, they are unlikely to mean PD. Conversely, early stage PD might include only one or two. Unless diagnosed, patients can end up with a frustrating treatment smorgasbord. A podiatrist might be treating a sore foot, a physio a sore hip, a psychologist anxiety, a specialist addressing TIAs and a GP dealing with constipation or bladder issues. It can be hard to see the full picture, especially if patients do not want to know. This is understandable.
Why get an early diagnosis?
PD is a distressing diagnosis, but, for some, it is a relief to finally find out what is going on and streamline treatment. One client had felt gaslighted when their loss of concentration, forgetfulness and a persistent shoulder pain were brushed over. A relation described how hard it was when no-one could explain the changes in their partner.
Even if someone might prefer not to know, and getting a diagnosis is difficult, there are compelling reasons why an early diagnosis should be sought and/ or provisionally given (if a practitioner is reluctant to be definitive) :
The wrong diagnosis and treatment for early symptoms, such as constipation, pain, bladder issues, sexual issues and/or depression can be harmful. A practitioner told me of a friend who had been hospitalised for long periods over three years, due to anxiety, before he was finally diagnosed with PD related depression and given more appropriate treatment.
I suspect many undergo a hip or knee replacement for stiffness/pain /OA when they have, instead early signs of PD. While surgery might help, at first, (due to pain killers and rehabilitation), anaesthetics can add to confusion and balance problems. Surgery for pain or stiffness is harmful in the late stages**.
While current medications do not appear to reverse or slow PD, L-Dopa can help alleviate stiffness and pain, including foot dystonia, and can help safety and improve walking. If it helps: it is diagnostic.
Other medication should be considered with a neurologist who specialises in PD.
An early diagnosis could lead to a helpful medication trial.
No treatment, at this time, has been shown to reverse the gradual PD decline, but individualised Physiotherapy exercises can help ease some forms of pain, and improve walking patterns and posture for an uncertain period of time.
Encouraging normal sport and activities, if safe and fun, is mentally and physically therapeutic but modifications might be needed. For example: bike paths are safer than roads. Or keep hard activities to mornings. Or avoid long, difficult, or remote bush walking routes due to increased risk of falls/poor planning. And not driving home after. Consider new interests. For example: as rhythm is helpful for PD, try dancing to music. Even alone!
Unless addressed effectively early, poor or restricted mobility/balance can contribute to secondary symptoms such as ankle swelling and, eventually, poor cardiac health.
Many with early PD or other NMD are fit to drive/work/ lead countries. Eventually, however, afternoon tiredness or confusion or poor planning or TIAs might compromise driving skills or the ability to work in high stress or challenging situations. This can be a delicate issue. Reluctance to give up work or a driving license might be one reason many avoid a diagnosis, but it can be helpful to plan for these situations. The afore mentioned president has, I think, competently taken on a stressful and demanding job, right up to when he couldn’t. It appears he failed to plan for this and may have become unrealistic about his abilities: a symptom of declining cognitive (thinking) ability.
Symptoms might remain little changed for years but can deteriorate suddenly. While everyone in their 60s should have wills, finances in order and a Medical Treatment Decision Maker appointed, (who knows what is around the corner?) the appearance of any of the above symptoms can be a reminder to get going.
Perhaps consider if houses with staircases or on a steep slope or proximity to health services could become an issue.
What to do
Get early support and information (below).
Find the right kind of neurological specialist who specialises in movement disorders and works closely with other health professionals. If a practitioner dismisses concerns or suggests they are psychological (or functional or psychosomatic or due to stress), get a second opinion. Specialists/GPs may not be in the same position as physios to see the early onset of movement symptoms. Critically, if someone (or family) feels something is going on they are usually right: research has shown that most can detect early changes well before physical or neuropsychological tests can.
See a physio with experience in this area. Practitioners who understand the diagnosis can help with exercises, memory strategies and programs tailored for PD.
It is essential ‘to get 40 minutes of exercise five times a week with huffing and puffing, not just a gentle stroll,’ * both to prevent cognitive decline and maintain general health and mobility.
A Speech Pathologist (who works with PD) can help with poor voice or mouth control.
An OT who specialises in driving can assess safety on the road and if licence limitations are needed.
Consider participating in a treatment trial (see below). This could be a game changer. Imagine missing the opportunity to slow down symptoms.
Avoid joint surgery.
Some still do not want be told that something is amiss. Failure to acknowledge or understand limitations can have serious consequences. I’ve seen patients with irrevocably stiffened joints and poor mobility which could have been prevented.
Work decisions could be compromised.
Are cognitive and movement reflexes adequate if a child ran in front of the car or the car in front braked suddenly? What if a blackout occurred while driving? Is car insurance at jeopardy after an accident?
Patients might be ‘too busy’ caring for their loved ones/grandchildren to exercise or get diagnosed. However EARLY treatment and self care will enable them to be better (and safer) carers for longer. Ignoring symptoms or advice to see a PD specialist will make it harder for families in the long run.
Family and workplaces trying to cope with someone who is distressed, anxious and/or moody or unsafe driving should be considered. They can help them prepare/cope/make safety adjustments and/or may need support themselves.
This is extremely challenging for everyone concerned.
Some changes should be made before the ability to change easily is lost.
References USed
Becker, C., Jick, S. S., & Meier, C. R. (2010). Risk of stroke in patients with idiopathic Parkinson disease. Parkinsonism & Related Disorders, 16(1), 31-35. doi:https://doi.org/10.1016/j.parkreldis.2009.06.005
Bronner, G., & Vodušek, D. B. (2011). Management of sexual dysfunction in Parkinson's disease. Ther Adv Neurol Disord, 4(6), 375-383. doi:10.1177/1756285611411504
Grace, J., Amick, M. M., D'Abreu, A., Festa, E. K., Heindel, W. C., & Ott, B. R. (2005). Neuropsychological deficits associated with driving performance in Parkinson's and Alzheimer's disease. Journal of the International Neuropsychological Society, 11(06). doi:10.1017/s1355617705050848
**McCormack, D., Boksh, K., & Sheikh, N. (2021). Total hip arthroplasty in Parkinson's disease - A systematic review of the current evidence. J Orthop, 24, 284-290. doi:10.1016/j.jor.2021.03.014
Woodward, M., Brodaty, H., McCabe, M., Masters, C. L., Naismith, S. L., Morris, P., . . . Yates, M. (2022). Nationally Informed Recommendations on Approaching the Detection, Assessment, and Management of Mild Cognitive Impairment. Journal of Alzheimer's Disease, 89, 803-809. doi:10.3233/JAD-220288
*quote: Associate Professor Michael Woodward: director Memory Clinic, the Austin Hospital Melbourne. See: https://www.abc.net.au/listen/programs/healthreport/mild-cognitive-impairment-alzheimers-asmr-atrial-fibrilation/14100654
The Unified Parkinson's Disease Rating Scale (UPDRS): a clinical tool used to assess the severity and progression of Parkinson's disease and monitor efficacy of medications.
Patient resources
Parkinsons foundation: https://www.parkinson.org/blog/awareness/managing-bladder
https://www.parkinsons.org.au/information-sheets
https://www.fightparkinsons.org.au/parkinsons-and-you/skin-scalp-and-sweating/#:~:text=People%20with%20Parkinson's%20can%20also,also%20experience%20drenching%20night%20sweats.
Better Health
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/parkinsons-disease-and-constipation
PD Warriors was created in 2011 by two Australian neurological physiotherapists. They offer a support network, an education channel, an ‘enabler/confidence giver’ : pdwarrior.com
The Garvan Institute of Medical Research is recruiting (November 2024) for trials
