Taking Care of Yourself through the Ups and Downs of Caregiving
Taking Care of Yourself through the Ups and Downs of Caregiving
A must watch video which looks at multiple sclerosis and Parkinson’s disease
But this applies to loads of condition like fibromyalgia and autism.
Does is apply to you?
Taking Care of Yourself through the Ups and Downs of Caregiving from brainXchange on Vimeo.
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Parkinson’s disease
The symptoms of Parkinson’s disease usually develop gradually and are mild at first.
There are many different symptoms associated with Parkinson’s disease. Some of the more common symptoms are described below.
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However, the order in which these develop and their severity is different for each individual. It’s unlikely that a person with Parkinson’s disease would experience all or most of these.
The three main symptoms of Parkinson’s disease affect physical movement:
These main symptoms are sometimes referred to by doctors as parkinsonism as there can be causes other than Parkinson’s disease.
Parkinson’s disease can also cause a range of other physical and mental symptoms.
balance problems – these can make someone with the condition more likely to have a fall and injure themselves
loss of sense of smell (anosmia) – sometimes occurs several years before other symptoms develop
nerve pain – can cause unpleasant sensations, such as burning, coldness or numbness
problems with urination – such as having to get up frequently during the night to urinate or unintentionally passing urine (urinary incontinence)
an inability to obtain or sustain an erection (erectile dysfunction) in men
difficulty becoming sexually aroused and achieving an orgasm (sexual dysfunction) in women
dizziness, blurred vision or fainting when moving from a sitting or lying position to a standing one – caused by a sudden drop in blood pressure
excessive sweating (hyperhidrosis)
swallowing difficulties (dysphagia) – this can lead to malnutrition and dehydration
excessive production of saliva (drooling)
problems sleeping (insomnia) – this can result in excessive sleepiness during the day
depression and anxiety
mild cognitive impairment – slight memory problems and problems with activities that require planning and organisation
dementia – a group of symptoms, including more severe memory problems, personality changes, seeing things that aren’t there (visual hallucinations) and believing things that aren’t true (delusions)
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See your GP if you’re concerned you may have symptoms of Parkinson’s disease.
Your GP will ask about your symptoms and your medical history to help them decide whether it’s necessary to refer you to a specialist for further tests.
Essential tremor
Essential tremor is a type of uncontrollable shake or tremble of part of the body.
Most people with essential tremor experience a trembling, up-and-down movement of the hands.
The arms, head, eyelids, lips and other muscles can also be affected. A tremor in the voice box (larynx) may cause a shaky voice.
Essential tremor is usually more noticeable when you’re trying to hold a position or do something with your hands, such as write. It doesn’t always affect both sides of the body equally.
Essential tremor is a common movement disorder affecting around four out of 100 adults over 40 years of age. Some people only have a mild tremor at first, which usually gets more severe over time.
Everyone has a very minor tremor when carrying out daily activities. For example, your hands will shake slightly when you hold them out in front of you. This is normal.
Sometimes, the everyday level of tremor can become more noticeable, particularly in older people. Noticeable tremor is also normal and it’s often caused by a raised level of adrenaline in the body, which can happen when a person is stressed, anxious or angry.
Essential tremor is more severe than normal tremor and it gradually gets worse over time. Eventually, the tremor may become so severe that carrying out normal, everyday activities can become difficult.
Certain things may temporarily increase any tremor, including:
tiredness caused by strenuous activity or lack of sleep
smoking
caffeine – from tea, coffee and some fizzy drinks
being very hot or cold
taking certain medicines – including some antidepressants and treatments for asthma
It’s important to visit your GP if you experience frequent or severe tremors.
Although there’s no specific test to diagnose essential tremor, your GP can carry out a physical examination and may request further tests to rule out other conditions (see causes, below).
They’ll also ask about your personal and family medical history as part of their assessment.
There’s no cure for essential tremor, but medicines can be used to help improve the symptoms in at least half of people with the condition.
In rare cases, a severe tremor may be treated with surgery if it doesn’t respond to medication.
Read more about treating essential tremor.
Essential tremor can run in families and research suggests it’s passed on by a faulty gene. At least half of people with the condition have a family member who also has it.
However, the age at which a tremor develops and its severity can vary greatly between different family members. Some people may also develop the faulty gene without inheriting it from either parent.
There are a number of conditions which may cause tremor, including:
overactive thyroid (hyperthyroidism)
Parkinson’s disease, a long-term condition affecting the way the brain co-ordinates body movements
multiple sclerosis, a condition of the central nervous system (brain and spinal cord) affecting the senses and the body’s actions
dystonia, a range of movement disorders which cause involuntary muscle spasms
stroke, which very rarely may result in tremor with few other symptoms
peripheral neuropathy, where the peripheral nervous system is damaged
A tremor can also be one of the withdrawal symptoms for people who are dependant on alcohol and have stopped or reduced their alcohol intake.
Parkinson’s UK We Won’t Wait Campaign: Donna’s story
To mark the beginning of Parkinson’s Awareness Week (10th-16th April) a new campaign has revealed a shocking lack of awareness surrounding the challenges those with Parkinson’s face trying to manage their condition.
The We Won’t Wait campaign has been launched today to highlight the urgent need to unlock the next step of research developments that could pave the way to better treatments for Parkinson’s. The main treatment hasn’t changed in 50 years, with no current medication available to slow down or stop the condition’s spread.
Our video features Donna, the third generation of women in her family to have Parkinson’s, with both her mother and grandmother diagnosed before her. Donna is committed to supporting research into the condition to find a cure, as she worries for her own daughter’s potential future diagnosis.
Donna is trying to avoid taking medication for as long as possible, as the side effects experienced by her mother were ‘devastating’ to see first-hand. They included hallucinations and forgetting who some of her closest family members were. Donna’s mother is now in a coma in hospital.
Donna was told in November 2016 by a private practice neurologist that she almost certainly has Parkinson’s. She is still awaiting a DAT scan via the NHS to confirm or deny her worst fears.
Parkinson’s affects almost every area of a person’s life with a range of physical and ‘hidden’ symptoms that include tremor, pain, sleep and mental health problems. Worryingly, there is a lack of public understanding of the day-to-day reality of living with the condition, with only a minority of people associating Parkinson’s with bladder or bowel problems (20%), anxiety (38%) and sleep problems, including insomnia and nightmares (32%).
The Parkinson’s UK ‘We Won’t Wait’ campaign aims to raise essential funds and awareness that will drive forward developments in Parkinson’s research and will hopefully help find more effective treatments that are desperately needed for the 127,000 people currently living with the condition.
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