Tuesday, July 16, 2024

Loving Someone With Parkinson’s

Parkinsons Is Like Dating Two People

Share the Love – Alex Echo is working with Next and Parkinson’s UK

Along with the uncertainty and confusion that can come with a Parkinsons diagnosis are the challenges associated with the condition itself and how to balance these with a relationship. Heather and Robbie have both experienced this balancing act first-hand.

Parkinsons is like dating two people, if youre with somebody, says Robbie. Because Parkinsons needs your time. It needs your efforts. It wants what it wants, and it takes what it needs. So if youre like, Okay, lets go to dinner at seven oclock tonight. But when seven oclock comes and you cant move off the sofa Parkinsons wins.

Musician Robbie Tucker.

The challenges associated with Parkinsons symptoms, which become more difficult as the condition progresses, can put a strain on partners. For Robbie, these challenges led to the recent end of a five-year relationship. Ive had the experience of a partner going, I can do this. Its not going to be an issue, he says. But they dont know what theyre saying.

If maintaining a relationship is difficult, so is seeking out a new one, says Heather. From being ghosted on dating apps, to feeling the pressure of an attraction-based culture there are many challenges awaiting people with Parkinsons on the hunt for love.

As Heather puts it in her own unique way: Urinary incontinence and dating go together like glass and muffins.

Sexual Issues For Partners Of People Living With Parkinsons Disease

Parkinsons can affect the partners sexuality too. Issues may include:

  • feelings associated with their loved ones diagnosis, including fear, anxiety, depression and grief
  • coping difficulties
  • tiredness from taking on more responsibilities
  • loss of sexual interest in the partner because of Parkinsons symptoms
  • changing roles from partner to carer.

Related Diagnosis: Lewy Body Dementia

Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.

In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.

This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.

Also Check: Is Constipation A Symptom Of Parkinson’s

Things Parkinsons Patients Loathe:

  • A doctor who obviously couldnt care less.
  • Trying to do something with disobedient fingers.
  • Da plane, da plane!
  • Ignorant questions and comments someone makes about the shaking.
  • Noticing symptoms are increasing or worsening.
  • Feeling like a burden.
  • Being unable to do things they used to do, such as tying shoes or buttoning a coat.
  • People thinking theyre mad or sad because PD borrowed a smile and wont give it back.
  • Falling.
  • Finding it hard or impossible to handwrite a letter or note.
  • Parkinsons Disease And Assisted Living

    Amazon.com: inktastic I Love Someone with Parkinson

    Caring for a loved one with Parkinsons disease can be stressful, emotionally and physically draining and financially taxing. And while people living with the disease may wish to remain at home as long as possible, sometimes that isnt the best option. The good news is that assisted living communities can provide the ideal setting for those with Parkinsons.

    Read on for information about the disease itself, how assisted living can help, and what to look for in an assisted living community for a loved one with Parkinsons Disease.

    Read Also: Pants For Parkinson’s Patients

    Find A Community With Experienced Staff

    First and foremost, prospective residents or their caregivers should ask about the staffs experience and training with Parkinsons in particular.

    An educated and trained staff is critical for Parkinsons, says Lehr. Loved ones should look for those who know about this disease and its various levels of progression. I would ask very specifically, What are the triggers you look for when you consider someone a viable candidate for this facility versus when you think this person should be in long term care? Thats going to tell you a lot about their depth of knowledge around Parkinsons.

    Lehr also says the assisted living community should have a neurologist on staff and rehab specialists on site.

    What Is Parkinsons Disease

    Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.

    Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.

    Also Check: What Are The Initial Symptoms Of Parkinson’s Disease

    Love Inspired Parkinson Research Fundraising To Surpass $1 Million

    Kim Teron, co-chair of Partners Investing in Parkinson Research, is committed to helping find a cure for Parkinsons disease, to help people like her husband, Ross Tuddenham.

    The volunteers fuelling Partners Investing in Parkinson Research are connected by one fact: they all love someone with Parkinsons disease.

    And that love has inspired PIPR to raise more than $1 million in just six years for the Parkinson Research Consortium at The Ottawa Hospital.

    PIPR brings patients with Parkinsons together, said Kim Teron, PIPR co-chair. These are the kind of people who go out and do something about Parkinsons.

    What they are doing is raising money, mostly through Run for a Reason during Tamarack Ottawa Race Weekend, to support research and attract world-class specialists. PIPR provides unrestrictive seed money to researchers, allowing the scientists to direct their own research and then leverage further grants.

    Now patients have access to coping mechanisms that would otherwise be available only in larger cities, said Teron, whose husband, Ross Tuddenham, was diagnosed with Parkinsons disease in 2010. Top researchers are drawn to The Ottawa Hospital because they see that the community supports research.

    I have a direct connection to these high-level scientists, said Tuddenham. I get the most up-to-date information from a doctor who is also a researcher working on a cure with funds we have helped to raise. We are committed to one anothers cause.

    Professional Help For Couples Living With Parkinsons Disease

    In Love With Parkinsonâs

    Remember, asking for help is a sign of strength. Suggestions include:

    • Seek assistance from a counsellor who is trained in sexual health.
    • See your doctor for information, advice and referral on any type of sexual difficulty. If you feel embarrassed, you might print out this fact sheet and highlight relevant sections for your doctor to read.
    • If you find it difficult to talk and communicate with your partner, counselling may help. Your doctor can refer you to an appropriate service.
    • Sexual dysfunction can be medically treated. For example, certain prescription drugs can stimulate an erection, while oestrogen medications or water-soluble lubricants can ease vaginal dryness.
    • Regular exercise reduces fatigue by increasing fitness and stamina. If you are not exercising already, see your doctor for guidelines on appropriate activities.
    • Some studies have found that depression affects sexuality more than the condition itself in people with Parkinsons disease. Talk to your doctor about treatment options for depression if you feel you are experiencing this.

    Also Check: Physical Symptoms Of Parkinson’s Disease

    How To Be A Good Spouse When They Have Parkinsons

    July 28, 2020 by Zach Galati

    Being a good caregiver to someone with Parkinsons can be a difficult job. If the person you are giving care for is your spouse then this can be like tiptoeing on eggshells. So, I wanted to share some of the tips and tricks I have learned from being a caregiver to a spouse with Parkinsons over the last few years. These tips have helped our marriage not only avoid breaking down but have helped our marriage flourish.

    Making sure they take medications

    Something helpful I do for my spouse is to remind him to take his medications. We set up alarms on his smartphone so that he is reminded when to take his medication. We bought weekly pill boxes with 3 compartments per day and set them up a week at a time. This makes it really easy to see if my spouse has taken their medication or needs help remembering. I can also encourage my spouse on days when taking medication can feel like too much of a chore.

    Assisting them in getting to the doctors

    Depending on where your spouse is at, they may not be able to get themselves to their doctors appointments. I usually drive my spouse to the doctors office or hospital, and he has agreed for me to come into his appointments with him. I usually jot down notes of what is said to make sure we dont forget, and we can talk it over again when we get home. However, arranging someone else to come and give them a ride to the doctors is also a great way to help out your spouse and give them less to worry about.

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    Parkinsons disease is a progressive disorder that develops as a result of losing dopamine-producing neurons. These cells are mainly located in the part of the brain called substantia nigra pars compacta, explains movement disorders neurologist and Parkinsons expert Lynda Nwabuobi, MD. With degeneration of these cells and hence, depletion of dopamine, Parkinsons disease includes symptoms such as tremor, bradykinesia , and rigidity manifest.

    This condition can make it more difficult to complete everyday tasks, like moving about the house, putting on clothes, and even speaking. It can be challenging to manage Parkinsons, especially on your own, so having friends and family there to support really can make the difference. Dr. Nwabuobi says its important to remember that Parkinsons is not fatal and many people live full enriched lives with the condition.

    One of the ways to help someone in your life dealing with Parkinsons this holiday season is to give them a present that not only makes them smile, but works to make their life more manageable and puts some level of control back in their hands. Here are some gift ideas theyll be sure to love and appreciate.

    Don’t Miss: Parkinson’s Disease Treatment Guidelines

    Relationship Tips For Parkinsons Loved Ones

    Being in love with someone with Parkinsons disease comes with an assortment of emotions. Some days, you might feel loved and appreciatedpossibly a sense of pride in being the main source of care and support for your partner. Other days, you might feel overwhelmed, sad or angry at the situationmaybe even frustrated with your partner.

    These feelings are natural and nothing to be ashamed of. You are in the difficult position of providing care and support for a person who will become increasingly dependent on you, and that person also happens to be someone with whom you are romantically entwined.

    Despite the complexities of this commitment, it helps to remember that honest communication, patience and understanding are usually all thats needed to keep most relationships healthy and long-lasting.

    Here are some tips to help you out:

    Welcome To Dating With Parkinson’s

    Amazon.com: inktastic I Love Someone with Parkinsons ...

    May 20, 2017heather kennedy

    As a single woman Ive learned a few things. I dont particularly like not having a primary partner to share this wild and fascinating human experience with, but I dont mind being alone so much. No one is snoring or stealing the covers, or pulling the dirtiest trick of them all gasp!…leaving only the appearance of a stocked fridge with just a few drops of milk at the bottom of the carton. I can let things slide, but if my hypothetical mate messes with the sacred morning coffee ritual – we might be headed for couples therapy!

    Appearances can be deceiving. I was married for almost twenty years when Parkinsons barged in to wreak havoc on our family of four. I didnt realize how easy our life was – we had two kids, a mortgage, pets, the various after school activities. LIfe was busy and had all the ups and downs of any normal family – whatever that means.

    So while Parkinsons arrival wasnt our only challenge, my blood-curdling screams probably didnt help matters improve. Becoming a single mom – losing my partner as I gained Parkinsons was a double blindside. Weve all heard Pat Benetar, and if love is a battlefield, then Parkinsons is guerrilla warfare. Does Parkinsons shoot first and ask questions later, or the other way around? Its all fun and games til the weaponry comes out! Sharp and quick, pick your poison.

    One of my favorite bassists has a song called LOYALTY

    Welcome to Dating with Parkinsons!

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    Cubii Pro Seated Under Desk Elliptical Machine

    While there is no cure for Parkinsons, a combination of exercise and the proper pharmacological therapy can alleviate symptoms, says Dr. Nwabuobi. Animal data suggests that exercise affects dopaminergic neurotransmission and neuroplasticity. Clinically, it helps patients maintain their balance, mobility and activities of daily living, she explains further. The Cubii Pro Seated Elliptical Machine is a great way to get in physical activity throughout the day, whether doing work at your desk or lounging on the couch. Its able to sync with smartphones and fitness trackers to keep an accurate record of your pedaled distance, calories burned, and more.

    Parkinson’s And Your Spouse Or Partner

    Schedule regular open, honest and frank discussions with your significant other. Give your partner room to voice frustrations not only with Parkinson’s disease but with you. Talk about money issues on some sort of regular basis as well, as issues like this can very easily create background anxiety in even the best of times.

    The two of you should consider some sort of couples therapy or regular meetings with some trusted, impartial observer who can provide a forum for sharing frustrations and ideas on how to overcome those frustrations. You need to be able to talk about the inevitable role changes that occur when Parkinson’s enters the picture.

    When you were healthy, perhaps you both worked and made near-equal amounts of money, but now perhaps your contribution to the familys finances is not as great as it once was. If this is the case, your spouse might need to work more at a time when he or she also needs to put in more time to care for you and your needs. How do you feel about this? How does your partner feel? Talk it out and, if need be, talk it out with a counselor.

    It is amazing how effective talking can be. Just sharing feelings and fears can resolve a million problems. If your spouse is stressed at all the new obligations she faces in caring for you, you, in turn, feel depressed by your helplessness. Sharing your feelings with one another will defuse any resentment that tends to build in reaction to the pain and stress you both inevitably feel.

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    Be Honest With Each Other

    A trap some caregiver-patient partners can get into is one person becoming the nurse while the other is demoted to helpless patient. Thats not productive and can end up being harmful if, for example, the caregiver takes on responsibilities that the person with Parkinsons is perfectly capable of doing.

    As a caregiver, try to start an open dialogue for tough conversations with your loved one where you come to an agreement about when the loved one truly needs help.

    Volunteer To Help Out

    Caring For Someone With Advanced Parkinson’s Disease

    Everyday responsibilities like shopping, cooking, and cleaning become much more difficult when you have a movement disorder. Sometimes people with Parkinsons need help with these and other tasks, but they may be too proud or embarrassed to ask for it. Step in and offer to run errands, prepare meals, drive to medical appointments, pick up medications at the drug store, and help with any other day-to-day tasks they have difficulty with on their own.

    Recommended Reading: Are Hallucinations A Symptom Of Parkinson’s

    What Are The Symptoms Of End

    Stage four for Parkinsons disease is often called advanced Parkinsons disease because people in this stage experience severe and incapacitating symptoms. This is when medication doesnt help as much and serious disabilities set in.

    Theres an increased severity in:

    • How you speak a softer voice that trails off.
    • Falling and trouble with balance and coordination.
    • Freezing a sudden, but temporary inability to move, when you start to walk or change direction.
    • Moving without assistance or a wheelchair.
    • Other symptoms such as constipation, depression, loss of smell, low blood pressure when going to stand up, pain, and sleep issues.

    Many times someone with advanced PD cant live on their own and needs help with daily tasks.

    Stage five is the final stage of Parkinsons, and assistance will be needed in all areas of daily life as motor skills are seriously impaired. You may:

    • Experience stiffness in your legs. It may make it impossible to walk or stand without help.
    • Need a wheelchair at all times or are bedridden.
    • Need round-the-clock nursing care for all activities.
    • Experience hallucinations and delusions.

    As Parkinsons disease progresses into these advanced stages, its symptoms can often become increasingly difficult to manage. Whether you or your loved one with end-stage Parkinsons lives at home, in an assisted living facility or a nursing home, hospice services can optimize your quality of life and that of your family members as well.

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