Wednesday, June 19, 2024
Wednesday, June 19, 2024
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When Life Gives You Parkinson’s

Blogs And Podcasts About Pd

When Life Gives You Lemons…

These blogs and podcasts are all about Parkinson’s disease . They are written or recorded by people diagnosed with Parkinson’s Disease , PD care partners, PD researchers, or PD organizations. Some are about living with PD. And some have a focus such as PD research, humor, or movement.

Pick a few and have a read or a listen. You may learn something and you will definitely not feel alone in dealing with PD.

Blogger: Dr. Maria De Leon, retired movement disorder specialist and young onset Parkinsons patient

Frequency: Bi-weekly

Topics covered: medication management dental hygiene tips for good sleep treatment of overactive bladder end-stage Parkinsons disease tardive dyskinesia combating apathy weight gain after DBS in women and womens health and sexuality.series.

Blogger: Tom Eckhardt, diagnosed with Parkinson’s at age 67

Frequency: Irregular

Topics covered: Join PD Avengers to End PD, Dr. Mischley’s PD School 2020, World PD Day, World PD Congress in Portland, passing of time, and more.

Blogger: Frank Church, professor and researcher in the School of Medicine at the University of North Carolina, Chapel Hill, and young onset patient

Frequency: Irregular

Topics covered: my public journey and life-steps with Parkinsons service and research milestones in Parkinsons disease research and discover MAO-B inhibitors and the VA My Parkinsons Story video series.

Bloggers: Staff writers and guest authors

Frequency: Once/month

Frequency: Irregular

Frequency: Irregular

How Do I Prevent Falls From Common Hazards

  • Floors: Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its usual place.
  • Bathroom: Install grab bars and non-skid tape in the tub or shower. Use non-skid bath mats on the floor or install wall-to-wall carpeting.
  • Lighting: Make sure halls, stairways, and entrances are well-lit. Install a night light in your bathroom or hallway and staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
  • Kitchen: Install non-skid rubber mats near the sink and stove. Clean spills immediately.
  • Stairs: Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it might be helpful to arrange most of your activities on the lower level to reduce the number of times you must climb the stairs.
  • Entrances and doorways: Install metal handles on the walls adjacent to the doorknobs of all doors to make it more secure as you travel through the doorway.

What Are The Different Stages Of Parkinsons Disease

Each person with Parkinsons disease experiences symptoms in in their own unique way. Not everyone experiences all symptoms of Parkinsons disease. You may not experience symptoms in the same order as others. Some people may have mild symptoms others may have intense symptoms. How quickly symptoms worsen also varies from individual to individual and is difficult to impossible to predict at the outset.

In general, the disease progresses from early stage to mid-stage to mid-late-stage to advanced stage. This is what typically occurs during each of these stages:

Early stage

Early symptoms of Parkinsons disease are usually mild and typically occur slowly and do not interfere with daily activities. Sometimes early symptoms are not easy to detect or you may think early symptoms are simply normal signs of aging. You may have fatigue or a general sense of uneasiness. You may feel a slight tremor or have difficulty standing.

Often, a family member or friend notices some of the subtle signs before you do. They may notice things like body stiffness or lack of normal movement slow or small handwriting, lack of expression in your face, or difficulty getting out of a chair.

Mid stage

Mid-late stage

Standing and walking are becoming more difficult and may require assistance with a walker. You may need full time help to continue to live at home.

Advanced stage

Read Also: What Is The Life Expectancy Of Someone With Parkinson’s Disease

Medicines For Parkinson’s Disease

Medicines prescribed for Parkinson’s include:

  • Drugs that increase the level of dopamine in the brain
  • Drugs that affect other brain chemicals in the body
  • Drugs that help control nonmotor symptoms

The main therapy for Parkinson’s is levodopa, also called L-dopa. Nerve cells use levodopa to make dopamine to replenish the brain’s dwindling supply. Usually, people take levodopa along with another medication called carbidopa. Carbidopa prevents or reduces some of the side effects of levodopa therapysuch as nausea, vomiting, low blood pressure, and restlessnessand reduces the amount of levodopa needed to improve symptoms.

People with Parkinson’s should never stop taking levodopa without telling their doctor. Suddenly stopping the drug may have serious side effects, such as being unable to move or having difficulty breathing.

Other medicines used to treat Parkinsons symptoms include:

  • Dopamine agonists to mimic the role of dopamine in the brain
  • MAO-B inhibitors to slow down an enzyme that breaks down dopamine in the brain
  • COMT inhibitors to help break down dopamine
  • Amantadine, an old antiviral drug, to reduce involuntary movements
  • Anticholinergic drugs to reduce tremors and muscle rigidity

Can Parkinsons Disease Be Detected Through Facial Expressions

Larry Gifford

US researchers have used an artificial intelligence tool to detect Parkinsons through the analysis of facial expressions. The team collected 1,812 videos featuring 604 people 543 of these participants didnt have Parkinsons while 61 did. They were recorded making three facial expressions disgust, surprise and a smile followed by a neutral expression. Measuring these in terms of micro-expressions, the AI tool found that people with Parkinsons had fewer facial muscle movements than those without. The researchers used this information to train a machine learning tool to distinguish between people with and without the condition. It was able to identify Parkinsons in individuals with 95.6% accuracy. Reflecting on the tools potential to be an important digital biomarker for the condition, the team wrote: An algorithms ability to analyse the subtle characteristics of facial expressions, often invisible to a naked eye, adds significant new information to a neurologist.

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About When Life Gives You Parkinsons

When Life Gives You Parkinsons is an honest, funny, and engaging podcast chronicling host Larry Giffords personal journey with Parkinsons disease. Gifford, his wife Rebecca, and their son Henry live in Vancouver, British Columbia. Gifford has worked in radio for nearly 30 years. In August 2017 he was diagnosed with Parkinsons at the age of 45. Now in its third season, When Life Gives You Parkinsons is a first-hand account of what it is like to live with PD for Gifford, his family, and other members of the worldwide Parkinsons community.

Answering probing questions from co-host Niki Reitmayer and letting listeners eavesdrop in on intimate chats with his wife, Gifford uses humour to diffuse heavy content and give the podcast a hopeful tone. He gives voice to Parkinsons experts and advocates from around the world and together they openly tackle tough topics. The authentic, frank conversations along with compelling storytelling is what makes this podcast interesting, informative, and enlightening.

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Recommended Reading: Can Parkinson’s Run In The Family

Helpful Hints About The Home

There are many tips and tricks you can put into place around your home that will help you in your everyday life. Simply adjusting the layout of your kitchen can make food preparation much safer and easier, or perhaps changing the type of sole you have on your shoe will help to prevent falls.

To see a wide range of suggestions to help with activities from dressing to driving, and movement to memory see Helpful hints.

Diagnosis Of Parkinsons Disease

Well, when Life Gives You Lemons! Funny Cereal Vine

A number of disorders can cause symptoms similar to those of Parkinson’s disease. People with Parkinson’s-like symptoms that result from other causes are sometimes said to have parkinsonism. While these disorders initially may be misdiagnosed as Parkinson’s, certain medical tests, as well as response to drug treatment, may help to distinguish them from Parkinson’s. Since many other diseases have similar features but require different treatments, it is important to make an exact diagnosis as soon as possible.

There are currently no blood or laboratory tests to diagnose nongenetic cases of Parkinson’s disease. Diagnosis is based on a person’s medical history and a neurological examination. Improvement after initiating medication is another important hallmark of Parkinson’s disease.

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What Are The Surgical Treatments For Parkinsons Disease

Most patients with Parkinsons disease can maintain a good quality of life with medications. However, as the disease worsens, medications may no longer be effective in some patients. In these patients, the effectiveness of medications becomes unpredictable reducing symptoms during on periods and no longer controlling symptoms during off periods, which usually occur when the medication is wearing off and just before the next dose is to be taken. Sometimes these variations can be managed with changes in medications. However, sometimes they cant. Based on the type and severity of your symptoms, the failure of adjustments in your medications, the decline in your quality of life and your overall health, your doctor may discuss some of the available surgical options.

What Are The Symptoms Of Parkinsons Disease

Symptoms of Parkinsons disease and the rate of decline vary widely from person to person. The most common symptoms include:

Other symptoms include:

  • Speech/vocal changes: Speech may be quick, become slurred or be soft in tone. You may hesitate before speaking. The pitch of your voice may become unchanged .
  • Handwriting changes: You handwriting may become smaller and more difficult to read.
  • Depression and anxiety.
  • Sleeping disturbances including disrupted sleep, acting out your dreams, and restless leg syndrome.
  • Pain, lack of interest , fatigue, change in weight, vision changes.
  • Low blood pressure.

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What Causes Parkinson’s Disease

Parkinson’s disease occurs when nerve cells, or neurons, in an area of the brain that controls movement become impaired and/or die. Normally, these neurons produce an important brain chemical known as dopamine. When the neurons die or become impaired, they produce less dopamine, which causes the movement problems of Parkinson’s. Scientists still do not know what causes cells that produce dopamine to die.

People with Parkinson’s also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain some of the non-movement features of Parkinson’s, such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and sudden drop in blood pressure when a person stands up from a sitting or lying-down position.

Many brain cells of people with Parkinson’s contain Lewy bodies, unusual clumps of the protein alpha-synuclein. Scientists are trying to better understand the normal and abnormal functions of alpha-synuclein and its relationship to genetic mutations that impact Parkinsons disease and Lewy body dementia.

Michael J Fox On How Accepting Parkinsons Diagnosis Changed His Perspective

When You Know Its Time to Fire Your Neurologist

I wasnt quite ready for that yet, she said. I immediately changed my diet. I immediately started exercising.

Exercise can help people with Parkinsons disease, James Beck, chief scientific officer of the Parkinsons Foundation, said.

Its not a cure-all, but it does wonders to help to manage symptoms, keeps people moving, which is really important, helps maintain muscle strength, he told TODAY. Its a rising tide that raises all boats helping people to live a better life.

Day did eventually start taking medication and her symptoms waned. But it was tough being so young and having a condition often associated with older people.

I didnt know anybody young and that was really hard, she said. I dreamed of having one friend or somebody that had my situation.

After a year of searching, she found someone with young onset Parkinsons disease. Then she met another and she decided to start a Facebook group of people in the area with the condition.

Its grown organically at this point. Theres 40 something people and weve gotten together of times in person, Day said. The optimism and hope that I bring to situations is not as common as I thought and I have an opportunity to help people and I enjoy that.”

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Emotional Psychological And Intellectual Wellbeing

It is important to look after your emotional, psychological and intellectual wellbeing, as well as manage physical symptoms.

We all need to look after ourselves, but if you have Parkinsons this is particularly important as this can not only enhance your quality of life but it may also slow down the progression of some symptoms. There are many simple ways in which you can enhance your general wellbeing as outlined below.

Using The Internet To Your Advantage

The Internet is an invaluable tool and is brilliant for finding information on Parkinsons. Search engines such as Google make it possible to target particular topics of interest within seconds, 24 hours every day of the year. However, it needs to be used with some discretion, as not everything posted on the Internet can be trusted and you need to be vigilant. By following a few simple rules you can certainly benefit from the wealth of information available to you. If you have difficulty using a computer, then there are various aids which can help so dont be put off. The Internet can also be a useful tool for doing things that might otherwise take more time, for example booking holidays, or making purchases online.

See also Using computers and the Internet.

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Sonic Hedgehog Protein Could Impact Parkinsons Disease Dyskinesia

Dyskinesia is often caused by extended use of the common Parkinsons medication levodopa and can be debilitating for those with the condition. Now, researchers in the US may have found a way to suppress these involuntary movements through a protein called sonic hedgehog. To conduct their study, the team administered levodopa and sonic hedgehog agonists to rodent and non-human primate models of the condition. The results revealed that dopamine neurons use the protein to communicate with other neurons thought to play a role in levodopa-induced dyskinesia. Increased signalling of sonic hedgehog pathways was found to reduce this dyskinesia providing novel insight into its formation and a potential therapeutic solution. What we find, wrote corresponding study author Professor Andreas Kottmann, is that in several animal models, by replacing dopamine together with agonists that mimic the effects of sonic hedgehog, these dyskinesias can be very much suppressed.

Slice Titlehow To Leave A Gift In Your Will

When Life Gives you Lemons Make Lemonade with Alcohol #shorts

Make sure that you include property, investments and any debts.

Choose the people or charities you’d like to remember in your Will.

The different types of gift you can leave are:

  • Residuary gift This is what remains of your estate, once other gifts and payments have been made. A residuary gift will keep pace with inflation meaning you are able to choose what proportion of your estate is left to friends, family or charity.
  • Pecuniary gift This is a set amount of money, the value of which may decrease over time due to inflation.
  • Specific gift A particular item, this could be anything from a piece of jewellery to furniture or property.

Appoint the individuals responsible for ensuring that your wishes are fulfilled. They will be named in your Will.

It’s a good idea to name at least 2 people as executors. Before doing so, check they are happy for you to do this. You can name a bank or solicitor as an executor if you wish.

If you do not have a suitable executor, Parkinson’s UK can act for you. For more information please call our Legacy Manager on 020 7963 9344.

It’s important to ask a legal professional to draw up your Will to ensure your wishes are properly carried out.

As a Parkinson’s UK supporter you can take advantage of our Will writing services.

Alternatively, you can find solicitors in your area who specialise in Wills, probate law and tax law on the Law Society website.

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What Is The Outlook For Persons With Parkinsons Disease

Although there is no cure or absolute evidence of ways to prevent Parkinsons disease, scientists are working hard to learn more about the disease and find innovative ways to better manage it, prevent it from progressing and ultimately curing it.

Currently, you and your healthcare teams efforts are focused on medical management of your symptoms along with general health and lifestyle improvement recommendations . By identifying individual symptoms and adjusting the course of action based on changes in symptoms, most people with Parkinsons disease can live fulfilling lives.

The future is hopeful. Some of the research underway includes:

  • Using stem cells to produce new neurons, which would produce dopamine.
  • Producing a dopamine-producing enzyme that is delivered to a gene in the brain that controls movement.
  • Using a naturally occurring human protein glial cell-line derived neurotrophic factor, GDNF to protect dopamine-releasing nerve cells.

Many other investigations are underway too. Much has been learned, much progress has been made and additional discoveries are likely to come.

Can Parkinsons Disease Be Prevented

Unfortunately, no. Parkinsons disease is long-term disease that worsens over time. Although there is no way to prevent or cure the disease , medications may significantly relieve your symptoms. In some patients especially those with later-stage disease, surgery to improve symptoms may be an option.

Also Check: What Is The Life Expectancy Of Someone With Parkinson’s Disease

Leaving A Gift To Parkinson’s Uk

To include a gift to Parkinson’s UK simply take the following details to your chosen solicitor or professional Will writing partner:

Charity name: Parkinson’s UK

Registered office address: 215 Vauxhall Bridge Road, London, SW1V 1EJ

Charity number: 258197 or SCO37554

Your solicitor will often look after it for you, but you may wish to retain your own copy too. Tell a relative or close friend where the original copy of your Will is stored.

If you have already included a gift to Parkinson’s UK in your Will, we’d love to hear from you to thank you for your support.

Let us know by calling our Legacy Manager on 020 7963 9344 or email .


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