The Big Questions

Can anyone answer the questions we all ask?

When 2 people with Parkinson’s disease (PD) meet, the conversation usually unfolds in a fairly predictable manner. The novice wants the veteran to describe the details of their experience of having PD, as all anyone wants to know is: "How will this disease affect me?"

It is only natural that when we have an illness, we want to know how it is likely to affect us as it progresses. We require answers and examples: "What will PD feel like?" "Is it painful?" "Is it going to kill me?" "Will I jerk and twitch all the time?" "Will I be in a care home?" "Will a new treatment work for me?" "When will there be a cure?" "Will I be a burden?"

Everyone can experience PD differently

We are eager to hear how someone else’s Parkinson’s has affected them, as, even if it is not good news, it helps us to face something rather than fear the unknown. Of course, we have all been told, "When you have met one person with Parkinson’s disease, you have met one person with Parkinson’s"

In other words, we must avoid the mistaken assumption that our path will necessarily imitate theirs. They may have mainly movement issues, such as tremor, freezing gait, or dyskinesia. We may be affected more by the non-visual symptoms, such as fatigue and depression. We may have needed deep brain stimulation (DBS) 5 years into our diagnosis. They may never need it.

What were you first signs of PD?

For Posy and many others, this can be answered only in retrospect. There are too many possible signs and symptoms to list, or perhaps none of them are connected to PD! Who knows? Fortunately, there is a lot of current research into diagnosing the condition earlier. Posy has always wondered why, over a 20-year period, in spite of the NHS holding and maintaining each individual patient’s medical records, her general practioner’s computer did not flag up "Parkinson’s Alert!" even though she was seen for all these ailments:

• Tendonitis/carpal tunnel
• Stiffening hands and fingers
• Frozen shoulder
• Tennis elbow
• Sciatica
• Slipped disc
• Aching muscles
• Repetitive strain injury
• Weak knees (and 2 arthroscopies)
• Back pain, neck pain, and foot pain (and 3 bunion operations)
• Migraines
• Depression and anxiety
• Restless legs
• Akathisia
• Fatigue
• Unpleasant dreams every night, always remembered on waking
• Slight resting tremor in left hand
• Brain fog
• Eyesight difficulties
• Skin concerns (basal cell carcinomas)
• Digestive issues
• Permanently cold hands and feet

Is this merely the list of a hypochondriac? Or, maybe you identify with some of these issues and can add even more of your own? Fascinating, is it not? Apart from feeling cold, Posy’s menopausal friends certainly identify with many of the health complaints on Posy’s list. It is no wonder that PD is often not recognized until it has already depleted most of the brain’s dopamine! 

When do I start medication?

Another issue that preys on the mind of the newly diagnosed seems to be: "Is it better to delay starting the meds in case they lose efficacy over time?

Does this question occur with other diagnoses? Even Posy’s diagnosing neurologist did not seem sure whether, with PD, it would be wise to wait. Can anyone declare that, without a doubt, the following statement is true: "The meds themselves are fine, but they cannot stop the progression of PD?" In other words, we do not become "immune" to levodopa. Rather, our brain stops brightening up as it once did on being given dopamine. Does the problem lie with the disease itself?

If this is the case, we may as well start taking it meds as soon as possible and get some relief from the troublesome symptoms. Why would anyone consider it to be more noble to resist taking medications at first? Posy’s consultant offered her a dopamine agonist as a sort of steppingstone towards taking levodopa. However, the prospect of possible, unpleasant side-effects (in particular, compulsive behavior) were too off-putting.

Posy waited 10 months, then filled her prescription for levodopa/carbidopa and, apart from the sudden onset complete insomnia, felt much better. 

What questions are you asked most often?

It would be incredible if everyone were to keep a detailed log of the questions we are asked most frequently - especially as memory loss can be part of this disease. We could give more helpful answers to the questions asked by newbies, or even by researchers. For, even though Parkinson’s does not present or progress in parallel across the board, it is always reassuring to have SOME answers to our questions. That is why communities such as this are so vital.

What are the questions you would like to ask? Share in the comments below.