Friday, May 17, 2024

My Life With Parkinson’s

Can Parkinsons Disease Be Prevented

My Life with Parkinson’s

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.

Relationships With Family And Friends

Living with Parkinsons will also affect your family and friends and it will take time for you all to adjust to the illness being part of your lives. How much you want to involve those close to you in the early stages is a very personal decision, however, it is important to remember that you would have had Parkinsons for some time – things wont have suddenly changed overnight.

For ideas on how to talk to family and friends and maintain strong relationships, as well as other tips on communication, see Relationships & communication.

Pippa Confronts Early Onset Parkinson’s

Pippa was diagnosed with Parkinsons when she was 25 years old.

I look at Parkinsons like a challenge, says Pippa.

But it has also been a problem. I cant drive anymore. I had to decide to stop driving when one day, as I was driving on a roundabout, my leg just decided it wasnt in the mood and froze.

Pippas mobility has decreased in the past few years. Now she uses a wheelchair or mobility scooter to get around.

Parkinsons teaches me patience something I didnt have a lot of when I was younger.”

“..Your brain doesnt know you are disabled, so I have to remind myself before I do anything that I am disabled. Every time I want to move, I have to think up a strategy of how I am going to make the move..

I feel Parkinsons has also brought me opportunities I wouldnt have had otherwise.

Pippa was amongst the very first group of people with early-onset Parkinsons to attend the annual UPBEAT Outward Bound course.

Id have never gone to Outward Bound if I didnt have Parkinsons, says Pippa. I completed the course, I even won the marathon.

Parkinsons has also meant that Pippa had the opportunity to meet Sir Peter Snell and Muhammad Alis daughter.

I jokingly told my Mum after meeting and shaking hands with Sir Peter that I wasnt going to wash my hand for a week!

Pippa lives on her own and is fortunate to have the support of family and friends.

Skufi is a great companion, but it would be difficult to give her the walks she needs by myself, she says.

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Collaboration Between Specialist Palliative Care And Pd Care

Specialist palliative care has an important role in the care of people with PD, and their families. This is in addition to, and in collaboration with, a wider multidisciplinary team approach for these patients, where a specialist team, working in movement disorders and including not only neurologists and specialist nurse but other disciplines, including physiotherapy, occupational therapy, psychological support, dietitian, spiritual support, speech and language therapy and counselling/social care.

The involvement of specialist palliative care has been shown to be effective and at the end of life there are potential triggers facilitating referral. However, throughout the disease progression there may be a role for managing complex issues and for other complicated issues, such as difficult decisions or ethical dilemmas. There is a need for greater awareness of all involved in PD care for the involvement of specialist palliative care, when the more generic palliative care that they are providing is not adequate or allowing the maximization of QOL. There are now several assessment tools that may be used on a routine basis with the aim of elucidating these complex issues. These include:

These scales can help to identify patient and families with particular issues and allow monitoring after management has been started to see how effective this has been. In this way the awareness of the role and possibilities of specialist palliative care can be raised.

Helpful Hints About The Home

Greatest Challenges for Living with Parkinson

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.

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Give Yourself Time To Adjust

Over time, youll likely become an expert in Parkinsons disease but right now, youre a newbie. Give yourself time for the diagnosis and all it might mean to sink in. Then, get educated: Ask your doctor for information you can take home and read, find other people with Parkinsons in your community or online to talk to, and browse sites like the National Parkinson Foundation and the Michael J. Fox Foundation for Parkinson’s Research.

Weeks Before Death Symptoms

Several weeks before death, your loved one may start exhibit a range of behavioral changes relating to their sleeping patterns, eating habits and sociability. They may begin to sleep more often and for longer periods. They will start to refuse foods that are difficult to eat or digest, but eventually they will refuse all solid foods. Do not try to force them to eat, as it will only bring discomfort to them. Your loved one may enjoy ice during this time, since it will keep them cool while also hydrating them.

Unfortunately, your loved one may become withdrawn, less active and less communicative. They may spend more time alone introspecting and may turn down company. Some also appear to become comatose and unresponsive, but this is a symptom of withdrawal. Your loved one can still hear you, so speak in a calm, reassuring voice while holding their hand. Children may become more talkative, even if they withdraw from other activities. Its important to let your loved one set their own pace during this time. Your loved one may also start to use metaphorical language, which could be a way of coping with death. It may also be used to allude to a task they feel they need to accomplish, such as seeking forgiveness.

Common symptoms in this period also include physical changes, such as:

  • Chronic fatigue
  • Swelling of the abdomen, such as edema or ascites

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A Soft Voice In A Noisy World

Karl Robbs first blog post on A Soft Voice in a Noisy World was over 10 years ago. In it, he welcomed other people living with Parkinsons to his website and shared his story of living with the disease since being diagnosed at age 23. Karl doesnt just chronicle his personal experiences , he also writes about new advancements for people with Parkinsons, and posts recorded conversations hes had with Parkinsons doctors, other people with Parkinsons, and others whose lives has been touched in some way with Parkinsons. Robb is also active on .

Living A Full Life With Parkinson’s

A Day in my Life with Parkinson’s

Page contents

  • Using the Internet to your advantage
  • Living with Parkinsons can affect the way you carry out a broad range of everyday activities, from working and driving, to simply eating and brushing your teeth. But by making some small changes in your lifestyle and also in your approach to activities, you can maintain independence and continue many of your usual routines. It is possible to maintain a good quality of life, simply by embracing change.

    There is no doubt that a positive outlook, along with determination to overcome obstacles and focus on what you can do, will help you adapt to living with Parkinsons and, given time and an optimistic attitude, you will be able to continue to pursue the activities and relationships that make your life enjoyable and meaningful.

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    Is Parkinsons Disease Inherited

    Scientists have discovered gene mutations that are associated with Parkinsons disease.

    There is some belief that some cases of early-onset Parkinsons disease disease starting before age 50 may be inherited. Scientists identified a gene mutation in people with Parkinsons disease whose brains contain Lewy bodies, which are clumps of the protein alpha-synuclein. Scientists are trying to understand the function of this protein and its relationship to genetic mutations that are sometimes seen in Parkinsons disease and in people with a type of dementia called Lewy body dementia.

    Several other gene mutations have been found to play a role in Parkinsons disease. Mutations in these genes cause abnormal cell functioning, which affects the nerve cells ability to release dopamine and causes nerve cell death. Researchers are still trying to discover what causes these genes to mutate in order to understand how gene mutations influence the development of Parkinsons disease.

    Scientists think that about 10% to 15% of persons with Parkinsons disease may have a genetic mutation that predisposes them to development of the disease. There are also environmental factors involved that are not fully understood.

    How Is Parkinsons Disease Treated

    There is no cure for Parkinsons disease. However, medications and other treatments can help relieve some of your symptoms. Exercise can help your Parkinsons symptoms significantly. In addition, physical therapy, occupational therapy and speech-language therapy can help with walking and balance problems, eating and swallowing challenges and speech problems. Surgery is an option for some patients.

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    Newly Diagnosed: Living Your Best Life With Parkinsons

    A Parkinsons disease diagnosis is life-changing, but it doesnt have to keep you from living your best life. If you are newly diagnosed, you are not alone. The Parkinsons Foundation is here to assist and empower you at every stage to ensure you continue living well.

    This article is based on a Parkinsons Foundation Expert Briefings webinar Newly Diagnosed: Living Your Best Life with Parkinsons” by Jenna Iseringhausen BSN, RN, Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders, NYU Langone Medical Center, a Parkinsons Foundation Center of Excellence.

    How Parkinsons is Diagnosed

    There is no specific test for Parkinsons disease. Doctors look at a persons symptoms and history, and may use various tests to make a diagnosis. A person must have two of these main movement or motor symptoms to be considered for a PD diagnosis:

    Just as each person with PD is unique, so is each persons Parkinsons disease experience. Possible non-movement symptoms can include:

    The Weight of Change

    For some, a PD diagnosis is a relief an explanation for ongoing changes or symptoms. For others, it can take an emotional toll, both on the person with Parkinsons and their loved ones.

    When youre ready, the Parkinsons Foundation recommends 5 steps you can take throughout your journey to support optimal living.

    1. Set and Prioritize Goals

    2. Talk About It

    Tips For Caregiving For Parkinsons With Psychosis


    Delusions, in particular, can be difficult to manage. A delusion is when someone has a strong, irrational belief about something that isnt true. Hallucinations, on the other hand, are when someone perceives something that isnt there. Hallucinations can involve sight, sound, smells, or other sensations. Its essential for caregivers to plan ahead for disease progression including behavioral changes.

    My husband has PD dementia. He suffers from delusions and some paranoia. The past week or so has been difficult. He believes the delusion so strongly that it keeps him stressed. At times he wont eat, and he is having trouble sleeping, wrote a member.

    I am a caregiver for my husband, another member said. His physical symptoms are getting worse, but the mental issues are by far the hardest to deal with. His paranoia, delusions, and hallucinations have gotten so bad that I am exhausted just trying to reassure him. I cant remember the last time I have gotten a good nights sleep. My husband naps all day long, then is up most of the night. I try to nap when he does, but its just not restful sleep.

    Here are some tips for caregivers on how to manage psychotic symptoms when caring for someone with Parkinsons:

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    On Time: A Parkinsons Podcast

    Hosted by Brian Grant and Heather Kennedy, both of whom were diagnosed with young-onset Parkinsons, On Time discusses such topics as how it feels to have Parkinsons and how to talk to about it with other people.

    Grant was an NBA player from 1994 to 2006 and received his diagnosis two years after retiring. In 2010, he founded the Brian Grant Foundation, which is dedicated to providing tools to improve the well-being of people with Parkinsons.

    Heather Kennedy is a motivational speaker, writer, and blogger who was diagnosed with Parkinsons in 2011. She works to raise awareness surrounding Parkinsons, particularly about the day-to-day challenges of living with the disease.

    The podcast is available on Brian Grants site, Spotify, Apple Podcasts, or wherever else podcasts are available.

    What Kathleen Found Out About Parkinson’s

    I remember the day my doctor told me I had Parkinsons, very clearly. I was standing outside the hospital in the pouring rain I dont know which made me wetter, the tears or the rain!

    Kathleens husband was waiting outside the Hospital for her and all she could say was, Ive got Parkinsons. Taking a positive approach to her diagnosis, Kathleen adopted healthy living, regular exercise and positive thinking.

    She joined the Parkinsons Society, went to their meetings and physiotherapy services and found out as much as she could about the condition.

    The one thing she doesnt feel she has found yet is emotional support. I think it is very important to be sensitive to their feelings about the losses they may be experiencing.”

    “For me, it was the loss of being able to china paint, play the piano, sing and travel.

    Kathleen finds how soft her voice has become a source of frustration.

    I used to sing with the choir and that is the thing I miss the most. Kathleen has adapted her life in other ways.

    Over the past 13 years, the tremors have got stronger, especially just before my medication is due.”

    Kathleen finds the tremors, mainly in her left hand, the most worrying thing.

    Thank goodness I am right-handed. I am active in many clubs and find it much worse when I am running meetings.”

    And I have learnt to only ever ask for half a cup of coffee please when going out for refreshments!

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    Whats It Like Living With Parkinsons Disease

    Whether you’ve just been diagnosed with Parkinsons Disease or you know someone who has, you may wonder what it’s like living with Parkinson’s disease. Life with Parkinson’s disease can be hard to imagine unless you have experienced it. In addition to motor symptoms like tremors, rigidity and slow movement, people with PD may also experience sleep disorders, mood changes, and relationship issues. Here are some of the main challenges of the condition, as well as tips to boost your quality of life or help someone living with Parkinson’s disease.

    Using The Internet To Your Advantage

    My Life with Parkinson’s Disease – Andy Barrie

    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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    Healthy Eating And Looking After Your Teeth

    Following a balanced diet will enhance vitality and help ensure that your medications are as effective as possible.

    Keeping teeth and gums healthy can be more difficult if you have Parkinson’s due to the nature of its symptoms and because some of the medications used to treat it can affect dental health. There are many things you can do to improve your oral health, as well as many professionals who can offer advice.

    See also Eating well and Teeth and oral health.

    Tips For Making Your Daily Life With Parkinsons Disease Easier

    Youve likely seen numerous tips for making your life more organized and easier to navigate. Well, the following are tips I have found that can make life easier if you live with Parkinsons disease.

    Begin by making your home safer. Pick up anything off the floor that may be a tripping hazard. Find a better place to store it. For example, instead of leaving your shoes on the floor, hang them by their shoelaces over the handle of the coat closet. This little trick also eliminates the need to bend over and pick them up off the floor.

    Move your bed so that the side you sleep on is nearest the wall. Install a grab bar onto the wall alongside the bed to make it easier to get up and out.

    A tip for those who find it difficult to turn over in bed: Use satin sheets and satin pajamas for sleeping. You may want to start out with either sheets or pajamas first and graduate to both if the satin doesnt prove too slippery for you.

    In the bathroom, I recommend a portable toilet seat that allows you to adjust the height. It will make it easier to get on and off the toilet.

    Should you have a power outage, have a couple flashlights readily available in easy-to-access spots. Adhere glow-in-the-dark tape on the handles of your flashlights so that you can easily find them.

    When you have Parkinsons, drying your hair can be a frustrating task. A wall mount may be a game-changer. It holds your hair dryer, freeing your hands to style.

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