Tips For Yourself As A Caregiver
While caring for someone with Parkinsons disease, its also important to care for yourself. These are some tips that can be helpful:
- Allow yourself time to process your emotions: Your loved one may not be the only person struggling to accept their diagnosis and prognosis. You may feel like youre in an alternate reality, where your whole world has turned upside down. Take the time you need to process your emotions so that you can stabilize yourself and be a source of support for them.
- Set realistic goals:Caregiving can be stressful and take a lot of work. It can be helpful to set realistic goals for yourself and determine your limits.
- Forgive imperfections: There may be times when youre unable to do everything you planned to or as well as you hoped to. Be kind to yourself accept that youre human and everything may not always be perfect.
- Explore community resources: It can be helpful to locate medical services, support groups, and other community services for your loved one as well as yourself in advance before you need them.
How To Talk To A Loved One About Parkinsons Disease
These are some strategies that can be helpful while talking to a loved one about Parkinsons disease:
- Check in regularly: Check in on the person regularly to ask them how theyre feeling and coping.
- Use empathetic language: Parkinsons disease can affect a persons ability to go about their daily life. The person might find it challenging to do things they once did easily. This can be difficult and frustrating for them. Try to be empathetic when you speak to them, so they feel supported.
- Offer assistance: As Parkinsons disease progresses, the person may not be able to drive, cook, clean, or care for themselves. Offer them your assistance and let them know they can count on you.
- Encourage them to settle their affairs: If your loved one is in a position to make important decisions, it can be helpful to encourage them to settle their affairs.
Energy Conserving Tips For Those With Parkinsons Disease
- Simplify your tasks and set realistic goals. Dont think you have to do things the same way youve always done them.
- Plan your activities ahead of time. Space them out throughout the day. Do not schedule too many things to do in one day. Do the things that take more energy when you are feeling your best.
- If needed, rest before and after activities.
- If you become tired during an activity, stop and rest. You may need to finish it on another day or when you feel less tired.
- Do not plan activities right after a meal. Rest 20-30 minutes after each meal.
- Ask for help. Divide the tasks among family and friends.
- Get a good nights sleep and elevate your head when sleeping. Be careful not to nap too much during the day or you might not be able to sleep at night.
- If your doctor says its ok, you may climb steps. You may need to rest part of the way if you become tired. Try to arrange your activities so you do not have to climb up and down stairs many times during the day.
- Avoid extreme physical activity. Do not push, pull, or lift heavy objects that require you to strain.
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Barriers To Accessing Mental Health Care In Parkinsons
Dr. Subramanian and colleagues including Dr. Chaudhuri, Dr. Mari and Dr. Fernandez wrote a paper along with Dr. Pontone a psychiatrist on the barriers to mental health care for PWP. Since the paper is not open access and contained some very key information to help PWP and their clinicians, we will cover some take home messages in this blog and in our next blog. This blog highlights the barriers and the next one will propose solutions. If you are having issues with your mental health, it is important to realize that you are not alone and to tell your loved ones and health care providers about what you are experiencing so that you can get help. The holidays are a time when many people experience more issues with isolation and mental health- we urge you to check in with your loved ones at this stressful time.
Stay Active And Engaged
Starting or maintaining a scheduled exercise routine can make a big difference when it comes to mobility. Good workout habits can improve balance, coordination, and mobility in people with Parkinsons Disease.
It is normal to lose muscle mass and coordination as we age, but beginning to live a more active lifestyle now can slow the progression of symptoms and keep you more comfortable when your mobility becomes more limited.
Here are some exercises that research has shown improve daily living with Parkinsons Disease.
Building up your level of activity will progressively create a reserve of strength that works against the loss of physical function as Parkinsons Disease progresses.
Additionally, staying socially or mentally engaged can provide a similar boost to physical activity. Whether you are getting together with friends or family, the time you share can reinforce a sense of purpose and offer consistent social engagement. Other tasks, like puzzles or other mental games, can exercise your mental faculties and keep you sharp.
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The Cost Of Living And Working With Parkinson’s Disease
$25 million. The combined direct and indirect cost of Parkinson’s disease, including treatment, Social Security payments and lost income in the United States alone.
$2,500. The average cost of medications for Parkinson’s patients each year.
$100,000. The average cost of therapeutic surgery that will set back a Parkinson’s patient.
Support For People Living With Parkinsons Disease
While the progression of Parkinsons is usually slow, eventually a persons daily routines may be affected. Activities such as working, taking care of a home, and participating in social activities with friends may become challenging. Experiencing these changes can be difficult, but support groups can help people cope. These groups can provide information, advice, and connections to resources for those living with Parkinsons disease, their families, and caregivers. The organizations listed below can help people find local support groups and other resources in their communities.
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Tips For Daily Living
If you are already living with Parkinsons disease, here are some tips to manage it:
- Exercise your brain. Read, work on crossword puzzle, do Sudoku, or engage in other activities that use your brain.
- Get moving. If you feel comfortable walking, swimming, or riding an exercise bike, go for itand try to do it on a regular basis.
- Try tai chi. We think of tai chi as a mind-body exercise, and it is, but it also has roots as a martial art in China. A 2012 study found that practicing tai chi helped people with moderate Parkinsons disease maintain stability and balance. And a 2014 study found that tai chi can help people reduce their risk of falling. It incorporates a flowing series of coordinated movements to help you maintain flexibility, strength and balance, and it can be easily adapted to meet your abilities.
- Practice yoga. You dont have to perform headstands or other physically challenging poses to get significant benefits from practicing yoga. You can improve your balance, mobility, flexibility, and strength with a form thats adapted for you.
- Find a support group. Whether you prefer an online support group or a group that meets in person, a support group can be an invaluable resource for helping you live with Parkinsons disease.
Make Your Space Safe And Comfortable
Mobility issues, balance instability and physical ailments are common symptoms of Parkinsons. As you move around or exercise, these symptoms can increase your risk of falling. Its always better to be safe, so make sure you have a plan in place of what to do if you fall.
You can limit your risk of falling by moving slowly, planting your feet firmly when you step, looking ahead instead of down, and considering a mobility aid like a can or walker.
You can also make changes to your home that will help reduce your risk of falls. To help make your space safer, be sure to secure furniture to the floor or wall. Keep you walking space clear and utilize non-slip rugs, slippers or socks.
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Tips For Living Alone With Parkinsons
Discussions about Parkinsons disease often mention a spouse or care partner who helps care for their loved one. However, it is also important to acknowledge that many people with Parkinsons live alone. Read on to learn about the benefits and challenges of living alone with PD, and where you can find support.
Dont Neglect Your Health
Many aspects of caring for a loved one are stressful, and if your own stress level is ratcheting up, you need to step back and get help for yourself. Keep up with regular physical checkups and follow your doctors advice if you need treatment for any ailments. And dont make a habit of putting off important tests for the sake of your loved one.
This care includes your mental health. If you begin to have feelings of intense frustration, talk to your doctor there are probably treatments that can help. And consider respite care or home help if you cant get family and friends involved.
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Try To Answer Questions
Your therapist will likely have a lot of questions for you during your first session. They will want to know about your symptoms, how they have been affecting you, and what your goals are for therapy. You must come prepared to answer these questions honestly. The more information your therapist has, the better they will be able to help you.
Additionally, be sure to ask your therapist any questions that you may have. This is your chance to get to know them and make sure that you are comfortable working with them.
Preparing for PT for PD can seem daunting, but it is important to do what you can to get the most out of your therapy. By following these tips, you can be sure that you are ready to start working towards your goals.
Its One Of Few Chores That Actually Reduces Stress
Pulling weeds, planting seeds or pushing a lawn mower may seem like arduous work, but once you get into the zone so to speak, it can be oddly relaxing.
A study conducted in The Netherlands asked two participating groups to complete a stressful task. Afterward, group one was asked to garden for 30 minutes, while group two read indoors. Not only did the gardening group report better moods than the reading group, they had noticeably lower levels of the stress hormone cortisol.
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Parkinson’s Practical Tips To Survive And Thrive At The Dentist
Dr. Manon Auffret- PharmD is based in France and author of a recent paper on dental care and Parkinson.
Shafaq Hussain Ali, a dentist living with Parkinson Disease in UK
Manon Auffret is an amazing PharmD in France who wrote an awesome recent review paper in the Journal of Parkinson Disease on oral health issues. Many of the tips from this paper I will summarize in this blog
Dr.Shafaq Hussain Ali is a brilliant UK based dentist living with Parkinsons disease. I had the pleasure of interviewing Shafaq and learning about her inspiring advocacy work and as part of this blog I include a link to this interview.
Tips For Getting Dressed With Parkinsons Disease
Parkinsons disease can affect a persons ability to do everyday tasks and chores, making even the easiest things complex and frustrating. Getting dressed requires both fine and gross motor skills which may pose difficulties to those living with Parkinsons disease, but there are ways to make getting dressed easier, according to the National Parkinson Foundation.
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Are Persons With Parkinson Predisposed To More Issues With Their Dental Health
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PWPs have more of a predisposition to dental caries and periodontal disease. They have more mobile and missing teeth, perhaps partially due to grinding which can also lead to broken teeth, tongue biting and orofacial pain.
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TMJ and headaches can also commonly occur.
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PWP commonly report more issues with chewing, swallowing, and mouth discomfort. And, Parkinsons disease can change the sense of taste and also of smell.
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Some PWP have higher rates of maxillofacial trauma due to falling.
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The motor issues of PD such as slowness and stiffness can lead to less effective brushing and flossing.
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Mental health issues in PD can lead to decreased motivation to care for teeth
Driving And Parkinsons Disease
The ability to drive safely can be impaired by PD, as the disease has multiple effects on motor, cognitive , and visual functioning. However, giving up driving can be difficult, as driving is connected to an individuals sense of independence, personal control and self-reliance. Its important to evaluate how the symptoms of PD might be impairing the ability to drive. Drivers can also get an on-road assessment of their abilities at their local Department of Motor Vehicles.
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Youre Getting Some Serious Exercise
According to the Centers for Disease Control and Prevention, you can burn about 330 calories doing one hour of light gardening and yard work. In fact, you can burn more calories gardening than you can walking at a moderate pace for the same amount of time.
A study published in the American Journal of Public Health found that people who participated in a community gardening program had significantly lower body mass indexes than those who didnt.
Like any other moderate to intense physical activity, youll want to pace yourself, listen to your body if it wants to rest, and always have plenty of water on hand.
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Change The Risk Of Later Developing Parkinsons
The current literature reveals conflicting data on the impact of HRT on PD risk. One possible explanation lays in the complex interaction between timing and duration of hormone exposure and the interaction with other genetic and environmental risk factors. Understanding the actual effects of reproductive factors, HRT and the Oral Contraceptive Pill use on the risk of PD may help to identify mechanisms and pathways responsible for these effects, and to determine strategies for future prevention of PD. Currently, the effects of HRT on PD risk remain inconclusive and will require further study. The interplay between these factors is complex, though targeting sex differences in the pathophysiology of PD may open new avenues of investigation and possibly the development of sex-specific treatments.
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For Most Couples A Parkinsons Diagnosis Will Send The Relationship Down A New Path With Each Person Experiencing Their Own Set Of Challenges
The person with Parkinsons may struggle in the relationship as symptoms worsen and they lose the ability to do certain things. Their partner may struggle as they move further into the role of caregiver.
As important as it is to continue a normal life together, couples should prepare for the inevitable changes that are part of the overall picture of Parkinsons. Whether you are a person with the disease or their partner, learn how to meet those challenges head on with honesty and compassion.
Can Parkinsons Disease Be Cured
No, Parkinsons disease is not curable. However, it is treatable, and many treatments are highly effective. It might also be possible to delay the progress and more severe symptoms of the disease.
A note from Cleveland Clinic
Parkinsons disease is a very common condition, and it is more likely to happen to people as they get older. While Parkinsons isnt curable, there are many different ways to treat this condition. They include several different classes of medications, surgery to implant brain-stimulation devices and more. Thanks to advances in treatment and care, many can live for years or even decades with this condition and can adapt to or receive treatment for the effects and symptoms.
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Ask For Help When You Need It
Youre not in this alone. When living with Parkinsons Disease, some days will be easier than others. Remember to lean on your friends and family around you who offer to help and build a support group.
When living with Parkinsons disease, some days will be easier than others. Having a support team that can help through this life altering disease is crucial to help maintain independence.
Sometimes its most comforting to be with someone who understands. Ask your doctor to recommend in-persona and online support groups for people with Parkinsons disease that you can join. These groups can provide additional advice, comfort and friendship. Theyll also help you to feel less alone.
Safety & Fall Prevention Tips
Falls are common to people with Parkinsons disease. Use some of these safety tips to help prevent or avoid falls and other injuries.
While symptoms may differ between individuals with Parkinsons disease, its always important to consider safety. Whether to eliminate tripping hazards, stand from a sitting position, or even while walking, these safety tips and tricks can help you stay healthy and safe during your daily life.
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