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Which advice would you give to someone who has just been diagnosed with Primary Orthostatic Tremor?

See some advice from people with experience in Primary Orthostatic Tremor to people who have just been diagnosed with Primary Orthostatic Tremor

Primary Orthostatic Tremor advice

Advice for Someone Diagnosed with Primary Orthostatic Tremor



Receiving a diagnosis of Primary Orthostatic Tremor (POT) can be overwhelming and raise many questions about the condition and its management. While I am not a medical professional, I can offer some general advice and suggestions to help you navigate this new chapter in your life.



1. Educate Yourself:



Take the time to learn about Primary Orthostatic Tremor. Understanding the condition, its symptoms, causes, and available treatments can empower you to make informed decisions about your health. Consult reputable sources such as medical websites, books, or articles to gather accurate information.



2. Seek Medical Guidance:



It is crucial to consult with a healthcare professional who specializes in movement disorders or neurology. They can provide you with personalized advice, answer your questions, and guide you through the treatment options available for Primary Orthostatic Tremor. Remember to be open and honest about your symptoms, concerns, and goals during these discussions.



3. Build a Support Network:



Living with a chronic condition like Primary Orthostatic Tremor can be challenging, both physically and emotionally. Reach out to friends, family, or support groups to share your experiences and feelings. Connecting with others who have similar conditions can provide a sense of understanding, empathy, and valuable insights into coping strategies.



4. Explore Treatment Options:



While there is currently no cure for Primary Orthostatic Tremor, there are various treatment approaches that can help manage the symptoms and improve your quality of life. Your healthcare provider may suggest medications, physical therapy, assistive devices, or a combination of these. Discuss the potential benefits, risks, and side effects of each option to make an informed decision.



5. Prioritize Self-Care:



Living with a chronic condition requires paying attention to your overall well-being. Make self-care a priority by adopting healthy habits such as regular exercise, a balanced diet, sufficient sleep, and stress management techniques. Engaging in activities you enjoy and finding ways to relax can also contribute to your overall well-being.



6. Manage Stress:



Stress can exacerbate the symptoms of Primary Orthostatic Tremor. Explore stress management techniques such as deep breathing exercises, meditation, yoga, or engaging in hobbies that help you relax. Finding healthy ways to cope with stress can positively impact your symptoms and overall well-being.



7. Communicate with Your Healthcare Provider:



Regularly communicate with your healthcare provider to discuss any changes in your symptoms, treatment effectiveness, or concerns. They can help adjust your treatment plan accordingly and provide ongoing support. Open and honest communication is key to ensuring you receive the best possible care.



8. Stay Positive and Seek Emotional Support:



Living with a chronic condition can be emotionally challenging. It is essential to maintain a positive mindset and seek emotional support when needed. Consider talking to a therapist or counselor who can help you navigate the emotional aspects of living with Primary Orthostatic Tremor.



9. Stay Informed about Research and Clinical Trials:



Stay updated on the latest research and clinical trials related to Primary Orthostatic Tremor. New treatments and advancements may emerge, and participating in clinical trials can contribute to the development of better management strategies for the condition. Discuss these options with your healthcare provider to determine if they are suitable for you.



10. Live Life to the Fullest:



Remember that a diagnosis of Primary Orthostatic Tremor does not define you. Continue pursuing your passions, setting goals, and enjoying life to the fullest extent possible. While there may be challenges along the way, maintaining a positive outlook and focusing on what brings you joy can help you navigate this journey.



Remember, this advice is general in nature, and it is essential to consult with your healthcare provider for personalized guidance and treatment options. They will have the most accurate and up-to-date information specific to your condition.


Diseasemaps
3 answers
I was DX with POT 16 years ago and it definitely has progressed over the years. I have been confined to a wheelchair, as I cannot stand or walk with out holding on to something. I have taken a good many falls.
However I have moved to a leisure home because I was unable to care for my home in spite of hired help. Since a year ago I joined a gym and worked hard with the GYM trainer , and have now learned through much excerize to walk with a walker, although I can't walk a long distance before the shaking in my legs and body takes over and I look for a place to sit down. None of the medications prescribed have ever worked.
It is a very dilabating condition. I am now 86 years old and my chair is my friend, as I don't see any hope in the near future for relief. I still work in the gym, trying to work on heping the balance and shaking condition. I have put on a lot of muscle in my arms and legs but the shakiness continues. I now walk with my walker, still rely on my wheelchair and have purchased an electric scooter to give a little more independence, like going out to a local grocery store with in the range of my scooter's batteries.
I have always led a very active life and spent 25 years sailing the open ocean to various countries and this didease struke me down three years after our sailing came to an end.
I have no advice to give except my motivation and determination to conquer this disease and with now doing some walking everyday with my walker has given me some hope to conquer the balance and shaking also. I am a lot stronger for my goals but it still will not go away! I check frequently on the net for some answers and it is always the same.

Posted Nov 10, 2021 by Aniya f. Rishell 100
Allow yourself to grieve what you can no longer do, but don't stay there. Focus on what you CAN still do, and the many blessings you have. Learn all you can about the disorder, how others are coping, what devices can help. Can't imagine living without a stool in my kitchen now! Join, and participate, in a support group!!

Posted Dec 1, 2021 by Marie Witham 1500

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PRIMARY ORTHOSTATIC TREMOR STORIES
Primary Orthostatic Tremor stories
I started feeling, what I called an 'internal tremor' when I was in my late 30's, usually when I was under a little stress.  I was showing my third dog in obedience and every time I went into the ring, I was suddenly overcome with this inner tremulo...
Primary Orthostatic Tremor stories
First light  sensations of tremors began between 1996 / 2000 and soon arrived problems of balance.  Doctor didn't know what was the problem ! He laughed at me and said I was stressed and tired ! I've been roaming so during long years,  about ...
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My story begins when I had severe ear and sinus infections.  An ENT doctor put me on 6 weeks of antibotic.  When I recovered and started my housework and shopping I had great difficulty standing for more than a few minutes.  It became impossible t...
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still that is but I can sit ... it's been a crazy ride the journey of ot it's gone from jiggling on my feet (early days) to literally falling out of the bath while attempting to shower to now accepting I need a walker to do shopping, festivals and ma...
Primary Orthostatic Tremor stories
 I was diagnosed last year after 15 years of not knowing what was going on. Having enjoyed some years of singing with our choral society, I thought I had turned into a nervous nellie when I couldn't stand up for a performance. I couldn't write if I ...

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Primary Orthostatic Tremor forum

PRIMARY ORTHOSTATIC TREMOR FORUM
Primary Orthostatic Tremor forum
for many years I've been suffering from Tremors such as finger tapping and leg shaking. About 2 years ago they escalated to Violent tremors. In the movement disorder lab they showed I did not have seizures and the doctor said he thought I was having...

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