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Living with Primary lateral sclerosis. How to live with Primary lateral sclerosis?

Can you be happy living with Primary lateral sclerosis? What do you have to do to be happy with Primary lateral sclerosis? Living with Primary lateral sclerosis can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Primary lateral sclerosis

Living with Primary lateral sclerosis

Living with Primary Lateral Sclerosis (PLS)


Primary Lateral Sclerosis (PLS) is a rare neurological condition that affects the upper motor neurons in the brain and spinal cord. While it is a progressive disease, it progresses slowly compared to other motor neuron diseases like ALS. Living with PLS can present various challenges, but with the right approach and support, individuals can maintain a good quality of life.



Medical Management


It is crucial to work closely with a healthcare team, including neurologists, physical therapists, occupational therapists, and speech therapists, to manage PLS effectively. Regular check-ups and consultations will help monitor the progression of the disease and adjust treatment plans accordingly.



Physical Therapy and Exercise


Physical therapy plays a vital role in managing PLS. A physical therapist can design a personalized exercise program to maintain muscle strength, flexibility, and mobility. Regular exercise can help slow down the progression of muscle weakness and improve overall well-being.



Assistive Devices and Mobility Aids


As PLS affects the motor neurons responsible for muscle control, individuals may experience difficulties with mobility and coordination. Assistive devices such as canes, walkers, or wheelchairs can provide support and enhance independence. Occupational therapists can also recommend adaptive equipment to assist with daily activities.



Speech and Swallowing Therapy


PLS can affect the muscles involved in speech and swallowing. Speech therapy can help individuals maintain clear speech and improve swallowing function. Speech therapists can provide exercises and techniques to strengthen the muscles involved in these processes.



Emotional Support


Living with a chronic condition like PLS can be emotionally challenging. It is important to seek emotional support from loved ones, support groups, or mental health professionals. Sharing experiences, concerns, and feelings with others who understand can provide a sense of belonging and emotional well-being.



Adapting the Environment


Modifying the living environment can greatly improve daily life for individuals with PLS. Consider making the following changes:



  • Accessibility: Ensure the home is wheelchair accessible with ramps, widened doorways, and grab bars.

  • Home modifications: Install handrails in bathrooms, use shower chairs, and consider adjustable beds for comfort.

  • Assistive technology: Explore devices like voice-activated assistants, remote controls, and home automation systems to make daily tasks easier.



Nutrition and Diet


A well-balanced diet is essential for overall health and can support the management of PLS symptoms. Consult with a registered dietitian to develop a personalized nutrition plan that meets individual needs. Adequate hydration and a focus on nutrient-rich foods can help maintain strength and energy levels.



Planning for the Future


While PLS is a progressive condition, the rate of progression varies among individuals. It is important to plan for the future and make necessary arrangements. This may include legal and financial planning, discussing healthcare preferences with loved ones, and considering long-term care options.



Continued Research and Clinical Trials


Stay informed about the latest research and clinical trials related to PLS. Participating in clinical trials can provide access to experimental treatments and contribute to advancing knowledge about the disease. Discuss these options with healthcare professionals to determine if they are suitable.



Remember, each individual's experience with PLS is unique. It is essential to work closely with healthcare professionals to develop a personalized approach to managing the condition. With the right support, adaptive strategies, and a positive mindset, individuals with PLS can lead fulfilling lives.


Diseasemaps
2 answers
The hardest part of this disease is accepting it. Knowing that you will not die from this disease you can make the best of it by being positive in the things you can do. Don't think about things you can't do.

Posted Mar 4, 2017 by hank 1470

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I've had PLS for 20 years but, my biggest bug bear is Emotional Lability.
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I am 61 years old and have had PLS for the last 26. I’ve been in a scooter/power chair since 2003, and after many years of getting weaker, my right arm went out of commission 3 years ago. I still have partial use of my left arm, and my voice/mouth/...
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