When you are told you have Parkinson’s Disease it is natural to worry about what the future holds. No doubt you had symptoms requiring investigation that led to a PD diagnosis in the first place but many sufferers, including celebrities like Michael J Fox want to know and be prepared for how the condition may progress.
Everyone is different
These are logical concerns but Parkinson’s is not a logical disease. There is no linear progression of symptoms x,y and z and every sufferer is affected differently. What makes PD so hard to predict is that it generally comes with two main clusters of symptoms – motor and non-motor issues. The first affects your ability to move with rigid muscles, tremors and lack of co-ordination. The second one involves issues such as dementia, pain and loss of smell.
Symptoms are a mixed bag
PD really is like a bag of tricks with sufferers not knowing which symptoms they will develop and how fast they will worsen if they do. For example, one person may have severe dementia but minor mobility issues. Another may have major tremors and appear very disabled yet are mentally unaffected. If the drugs used to treat Parkinson’s are effective – a person’s motor issues can be greatly relieved but medication works better for some people than others – adding yet more “unknowable’s” to the mix.
With that being said; Parkinson’s does tend to follow a broad pattern providing some semblance of a path of progression with milestones to watch out for along the way. Knowing what may lie ahead can help sufferers cope better with symptoms, if and when they do arise. Symptoms that do come tend to come slowly, with new ones popping up along the way. Indeed; many sufferers recognise that they probably had Parkinson’s for two or three years before they even sought a formal diagnosis.
Parkinson’s is not necessarily a condition that will limit your life span but it can certainly affect quality of life depending on the severity of the disease. Approximately ten years on from diagnosis; most people with PD will be dealing with at least one major issue such as mobility or dementia.
Here is a guide to the two clusters of symptoms and disease progression to watch out for:
These are split into three categories; mild, moderate and advanced but there will be some cross-over depending on how the symptoms affect you personally. For instance; a moderate tremor in your right arm if you are right handed can severely affect your quality of life.
Mild – pre-diagnosis – 3 years
At this stage symptoms feel like a nuisance but medication will likely keep them in check and you will still be able to complete most tasks.
- Arms don’t swing as freely
- Legs feel heavy
- Facial expressions feel difficult
- Posture may be stooped
- Handwriting becomes smaller
- Arms or legs feel stiff
- Symptoms such as tremors affect one side of the body such as a tremor in one arm
Moderate – the next 3-7 years
It is likely that you will start to see an increase in the severity of existing symptoms especially with fine motor skills. Something that you could do at diagnosis may become impossible to do such as fastening a button. At this stage; many will consider home care services to help them complete daily tasks.
You may also find that medication becomes less effective in that it can wear off in-between doses.
- Changes in speech such as tone/volume being affected
- Feeling as though your feet are glued to the ground and taking small, shuffling steps
- Trouble swallowing
- Difficulties with co-ordination/balance
- A feeling of being slowed down
Advanced – 10 years plus
Some with Parkinson’s never reach this stage but if they do then medication tends to decrease in effectiveness. This could lead to serious disabilities.
- Mainly bed-bound or limited to a wheelchair and posture is affected
- Require around the clock care
It is usual for everyone with Parkinson’s to have at least one of the following that may be mild, moderate or advanced. If severe enough; non-motor symptoms are actually more likely to necessitate the need for residential care over motor symptoms. One or several of the following may be suffered for years before classic signs of PD such as tremors appear or they may appear much later alongside existing motor symptoms.
- Sleep issues
- Loss of smell
- Low blood pressure on standing
- Mild cognitive impairment such as forgetfulness, disorganisation
- Frequent urge to pee
Dementia and Psychosis
These are probably the symptoms most feared by sufferers but luckily many will never reach this stage and they usually only affect those at a very advanced stage. Psychosis is a serious condition where you see or hear things that aren’t real or believe in things that have no basis in reality. Dementia affects memory and the ability to think clearly and prevents those living with it from living an independent life.
Ending on a positive note
Although Parkinson’s Disease is a progressive illness – the disease often takes years to advance to a point where it severely impacts on everyday life and medication and other therapy regimes can keep many symptoms in check. If you or a loved one suffers from PD then it is worth considering when you will choose to have care in your own home so you or your family member can keep your independence and familiar routines. It’s not just help doing physical tasks either. Care services can help ease depression and a sense of isolation; providing company and emotional support along the pathway of Parkinson’s. Professional care for the elderly at home – can have a positive impact on health not just for a sufferer of PD but also for their loved ones; providing peace of mind that their relative is supported every step of the way.