Parkinson’s is a presently incurable disease, only given a diagnosis when the patient last lost around 20% of dopamine, a brain chemical responsible for helping us walk among other things. Symptoms of Parkinson’s are usually quite easy to spot:
- A shuffling walk (no arm movement)
- Frequent falls
- A ‘mask-like’ face
- Mumbling speech
- Spidery handwriting
- Drooling
Although people often association PD with shaking, this is not always the case, and sometimes a medicine side-effect. A far greater risk for most is falling, due to poor balance.
PD can be an isolating disease, as the voice goes low and it’s difficult to write. And often the ‘mask’ expression looks like someone has no interest in the outside world. Which of course with other symptoms can lead to depression.
Choking is also a hazard, so avoid things like roast potatoes, nuts and seeds.
Simple acts can become difficult like getting dressed (doing up buttons). And also bathing and also cooking and holding things like cups.
As the disease progresses, this can take a heavy toll on quality of lifestyle.
Keep the Home Safe
Due to risk of falling and dropping things, it’s a really good idea to have an NHS occupational therapist visit, to go through the home to try to see if there are adaptions to make the home safer and more fall-proof.
- Get regular eye tests with the optician.
- Avoid alcohol.
- Take simple gentle exercise
- Mop up spills and remove clutter
- Fix trailing wires and frayed carpets.
- Use non-slip mats and rugs
- Ensure all rooms and stairs are well-lit.
- Rearrange or remove furniture, if needed.
- Avoid trailing loose clothes, wear supportive shoes (not clogs)
Go Organic!
Around 10 to 15% of PD cases are thought to be genetic. But most experts now agree that most people have Parkinson’s from one of two reasons:
One is head trauma of some kind (like Mohammad Ali – so don’t take up boxing).
The other and more likely for most patients is pesticides, often from garden chemicals. One of concern is now banned in the UK, yet is still exported from here to the US (that has not banned it).
Get a Medication Review
Parkinson’s medicines can have lots of side effects. So if you are told to take it, be sure to get a medication review, to ensure other drugs are not interacting with it.
Sometimes GPs don’t do this yearly by default, so ask. It may be safer to come off or adjust other medicines.
Take unused medicines to your local pharmacy for recycling. Never flush them down the loo.
Look After Those Who Care
See the help our carers tag for information on how to help people who are caring for PD patients (whether relatives or friends).
It’s important also to ensure both patients and carers claim benefits they are entitled to. This can sometimes end up in upping someone’s income by £100 or more (with back-pay if you ask).
And getting onto disability benefits, also entitles you to a whole host of other benefits like free dental care, transport discounts, Radar keys and even winter fuel allowance being restored. It will also give VAT relief on any items you need to buy in the future.
Make Use of Genius Inventions!
A strange thing is that if you put sheets of paper on the floor, most patients who shuffle will start walking normally, as they have an ‘obstacle’ to step over.
Pathfinder kind of does the same, but uses a laser that attaches to the shoe, creating a ‘visual obstacle’ to prevent falling.
You can’t adjust the brightness (due to regulations) so it not be easy to see in sunlight. The founders say to wear hard flat shoes with little heels (not flops, nor indoor slippers with no heel cap).
SteadyScrib is a pen, designed to transform writing back to normal. It uses magnetic technology to address tremors, rigidity and bradykinesia (slow movement).
Gyenno Spoon keeps hands steady while eating, like ‘sticking your hand in thick syrup’. It was invented by a medical student, who watched a patient struggle to eat a bowl of soup.
LaserCane again creates a visual obstacle, by beaming a laser in your path. This is expensive so find a friendly GP who may be able to arrange a grant (cheaper than a hip replacement). This and U-Step (a safer ‘zimmer frame’ that won’t roll away on its own and glides over uneven surfaces) are both on loan to hospitals, so people can try them out.
StairSteady is an expensive (but more affordable) alternative to stair lifts. Invented by a student for her GCSEs, engineers fit quality handrails that lock in place, to prevent people falling down stairs. You can fold the handle away when not in use, and there are solutions for split stairs. The site has full information.
Beech Band has been created by a man with young-onset Parkinson’s, which dramatically affected his voice. One night while eating a chocolate bar, he discovered a tapping movement that let him speak.
He and his inventor friend knocked up a prototype and it worked. They are currently raising funds to try to launch it for around £15, to ensure no big tech company starts making it only for use with Bluetooth or wifi.
Kangaroo Cup is a happy story. The young invented it to her grandfather who had Parkinson’s, and today she is a millionairess! It works to keep stable, so anyone with shaking hands can hold drinks. The first ones were plastic, and there are now ceramic versions.
Switch Donations to Humane Research
Most of the big Parkinson’s charities receive millions of pounds, and use a lot of that to carry out unkind tests on innocent animals.
Instead, switch donations to humane research charities which fund boffins at universities doing wonderful work without animals, yet receive fewer funds and no government help. And more chance of a cure.
