Caring for people with ALS.

ALS or Amyotrophic Lateral Sclerosis is a progressive neurodegenerative disorder primarily affecting the motor functions of our body. It initially affects small muscles, impairing their function and also  involves the chewing muscles, speech and facial movements. Later, the degeneration symptom affects our limbs and finally, the respiratory muscles and a mechanical ventilator is required for continued survival. Unfortunately, there is no definitive cure for ALS and individuals have low life expectancy as the disease progresses. Currently, medical treatments include therapeutic intervention which ‘slows’ down the progression however, ALS research is still an ongoing process.

Virtus care believes in a multidisciplinary care approach towards ALS patients that has proven to improve their quality of life and overall survival (Hogden et al., 2017). The fact is, the average survive rate is 2-3 years. However, few people were successful in surviving for more than 10 years including the famously known Stephen Hawking who lived on for 25 years, after the diagnosis.

A specialized care system must be adopted for these patients, providing them palliative and primary care and allowing them to assimilate to their condition. Because of their muscle dysfunction, it is important to assist them in their daily routines like reconstructing the home’s layout in order to accommodate them. Virtus Care is an organization where the caregivers are trained for ALS care. Our company caters to the need of an ALS patient, the caregivers are meticulously trained to provide optimal care including implementing home modifications and additional supporting systems for these patients. This article will provide a detailed description of the complex care system required for ALS people.

Home modifications:

ALS patients go through gradual muscle weakness; this can become significant within 12 months of diagnosis, which is why, complete house re-modelling is essential. From simple ramp setups to wider doorframes for wheelchairs, one must devise an appropriate plan. Virtus care advises proper financial planning since re-modelling and assistance devices are an expensive endeavour. Furthermore, insurance mostly doesn’t cover the non-medical expenditure which is why a proper plan is important in order to avoid a financial crisis (Home Modifications for People with ALS, n.d.).  

• ALS patients require wheelchairs since the disease ultimately causes immobility. If possible, a ramp must be installed at the porch for easy mobility. The ramps’ total rise and incline angle from the landing determines the total length required. Since the patient will require assistance to push the wheelchair along the ramp, its incline angle must be minimum (8˚ in most cases) in order to maintain stability. Additionally, a ramp can be installed in their car and make sure that the vehicle has ample room for the wheelchair. Otherwise, you can always call an ambulance if you plan on visiting the hospital with them.

If ramps are impossible, then wheelchair lifts are an alternative option which doesn’t require much space.

• ALS patients must have all rooms accessible within the same floor instead of multiple storeys since they are wheelchair-bound, and the latter option is impractical. In case of otherwise, staircase lifts can be installed keeping in mind they are usually expensive.

• Door frames of their rooms and toilets should accommodate a wheelchair, on average they should be 2.8 feet wide. Additionally, a wheelchair commode is another necessity for these disabled people.

Local care services including Virtus Care can provide you a sustainable budget. If you ask around in your local ALS organizations, there are some remodeling equipment that can be loaned or sold at low price rates.

Taking care of an ALS patient:

Caregivers must be trained for ALS care; this also includes emotional support especially in the later stages where pre-hospice care allows them to prepare for their demise. An extensive follow-up routine to health practitioners, following their medication plans, and assisting them in simple tasks are all the responsibilities of a caregiver (MAJMUDAR et al., 2014).

Virtus Care believes that with proper rehabilitation system it will allow ALS patients to live their lives to the fullest, despite knowing its inevitable outcome. Some of the way caregivers can assist them include;

• Palliative care is an important aspect of an ALS life therefore one must consult guidance from additional therapists and healthcare providers including a nutritionist, physical therapist and neurologists.

• Educate the ALS patient in the early stages when he/she has adequate limb mobility. Rehabilitation must include energy-conserving techniques to limit muscle fatigue or in advanced stages educate them about assistance devices so that they can adapt easily (MAJMUDAR et al., 2014).

• ALS patients are susceptible to depression and anxiety, therefore emotional and physical support is essential in this circumstance. Therapy sessions or interacting with similar people are some of the options to consider.

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