Diagnosis and Treatment
Everyone can remember the date of their diagnosis. Very few can remember a word of what was said to them afterwards, as an extract from Tom Isaacs’ book Shake Well Before Use elaborates in a feature in this section. You can also read Tom’s personal account in Advice on Living Well.
Some are relieved to have a diagnosis. Having lived with worrying unexplained symptoms for a number of years, many are reassured to at last know that what is wrong has a name. It can take up to two years for a diagnosis of Parkinson’s to be confirmed.
Further reading and useful links
Many of the Bloggers on this site discuss and reflect on diagnosis.
The Parkinson’s Disease Foundation provide clear and factual information about how a diagnosis is made.
Health Talk have information and guidance on diagnosis and you can also see and hear people share their personal stories on film.
Watch our informative webinar Issues for the newly diagnosed which explores some of the key areas to consider from treatment decisions to insurance and driving. If you would like to share your experiences about your own diagnosis, please take part in one or all of the Parkinson’s Movement Polls which is featured in the webinar.
In a recent poll you told us that 55% of PwPs had been diagnosed by a general neurologist, 32% by a movement disorder specialist and 9% by a GP. You also reported that much of the information given at the point of diagnosis was misleading (30% reported this) and 60% found the information distressing. 42% of people were not accompanied when attending their diagnosis appointment. To take part click here
‘I have something to tell you…’ breaking the news to family and friends
And they say that words will never hurt you. These words make a difference. Their utterance fundamentally shifts your worldview, your sense of self. They often represent concepts too damn big to be comprehended at once, and so they usher in a long process of soul-searching, adjustment and re-alignment. So much for what these brutal, unforgiving words do for you. When the consultant who’s uttered them a thousand times tells you, who will only hear them once, they mean one thing. But words are made to be repeated, and no sooner have you been told that you are irrevocably ill, than you realise you must turn the tables. It’s now your turn: your turn to be the teller.
The thing about PD is that it makes a habit out of challenging you in new ways as a matter of course. It’s not a disease that is predictable. It’s a disease with attention deficit disorder. It’s very similar to the way in which people respond when you tell them. I’ve had almost as many responses as I have had people to tell. The responses I’ve received have influenced the ways in which I subsequently tell people. I imagine you’ll find the same thing. The first people I told were expecting something, so weren’t surprised: it was more confirmation, a name attached to a known problem, than a bolt out of the blue. The next set of people were those close, but unaware. They were told by my then wife and myself, usually with the caveat of ‘we have some news’, followed by an inability to grasp the nettle until too drunk to be overly coherent. The choice of the universal code for ‘we’re having a baby’ as the introduction of the discussion was also perhaps unfortunate, as a look of embarrassed disappointment is perhaps not what you expect to see when you’ve told someone you have a progressive, degenerative, and incurable brain disease.
‘You’re very young’, ‘you don’t look ill’, ‘it’s only mild, then’, ‘er …’, ‘sorry’, ‘oh my god!’, ‘you poor, poor man’, ‘you need to try …’, ‘oh, what’s that?’, ‘is that what that actor has’, and so on. It starts off being hard to tell people, then often becomes hard not to comment on their reaction. As you get better at telling, at assessing when you ought to tell, it becomes easier. Sometimes you’ll find yourself making a comment which only makes sense if people know. Then you begin to lose patience with people. But remember this: when you tell somebody new, whoever they may be, they’re merely one in a long line of people you’ve told. But for them, it’s the first time you’ve told them. For them, you are the consultant. They will never look at you in the same way again. Give them a break.
My body, my choices: Viktor Tron
I know that starting with low dosages and with clever ways of delivery, levodopa efficacy can be greatly prolonged. Add to this the often quoted – albeit uncorroborated – result that starting early is advantageous (in that late starters never catch up) and you understand why there is a continuing trend to dispel the belief that patients should hold off with levodopa. Ironically, the article that assesses such new evidence which my clinic kindly sent me also states that dyskinesias are expected to come within five years for close to 100% of people with Parkinson’s starting levodopa under the age of 40.
On top of this, there is clearly a lifetime for levodopa treatment with many even young onset patients reaching a ceiling after as few as 10 years and needing to resort to DBS or experimental surgical solutions. Starting on dopamine agonists is a possibly even more frightening prospect. Contrary to the low published figures, nearly all people taking such drugs develop impulse control disorders [ICD]. Anecdotal stories about sex addiction, gambling, substance abuse or more recently internet addiction abound. Having compulsive tendencies anyway, this also leaves me weary. With little or no side effects though, the third option – to try MAOB inhibitors like rasagiline – seems more of a just-for-the-sake-of-it approach given its poor record of symptomatic effectiveness. On top of this, I remain unconvinced as to which of my symptoms would respond well. Some say levodopa would help my tremor – my pet bane, which is also socially most difficult to handle, some say it will help all else but tremor. On the other hand, some cherished imperatives such as ‘seize the day’ or ‘live for the present moment’ seem to dictate a different attitude: knowing full well that PD meds could really help me now, one could take the route of instant gratification, and regard the above concerns as bridges to cross when one gets there.
Surely the only way to find out would be to try experimenting with medication regimes, but I feel that is a slippery slope of no return. Risking admitting to denial, I would say it would close certain doors to improvement, symptom delay or partial recovery which I am yet to explore. The doctors at the neurology clinic often listen patiently while I’m sharing my forays into all kinds of ‘alternative’ ways to improve my condition, but in the end they just mumble unimpressed: it is up to you, Mr Tron, but I think you are missing out. The same opinion often comes from fellow PwPs. Many with young onset Parkinson’s succumb to pressure and start on meds just to somehow take control, which leaves the control case of natural control seriously underresearched. For the moment, I see more benefit in living this experiment myself: perform a longish-term study of the unmedicated condition. I am grateful to a ‘benign course of progression’ for being able to do so. There’s many ways to skin the cat, or fox in our case; as his friend commented [in a recent Fox News report], Michael J Fox fights the disease by changing his lifestyle. Adapting to your everchanging condition is a challenge, but observing the constant and increasing discomfort, being aware of losing dexterity, agility and developing disabilities without reacting also offers a unique and miraculous opportunity to practice equanimity.
- 'I would have never thought you had Parkinson’s Disease.' 'You’re constantly active. How is that possible if you have Parkinson’s Disease?' 'I’ve never seen you suffer with this disease.' Some of the most common comments that I have finally come to the realisation will never have an appropriate answer. Disease,…