Caregiver's Compass

We are dedicated to providing support that can truly make a difference for individuals living with Huntington’s Chorea in Pakistan. Our focus is on offering essential resources and tools that can significantly improve the quality of life for patients.

We have curated a selection of fundamental items and services that we believe can be game-changers, tailored specifically to the local context. Additionally, we have included links to relevant sources and further aid in your journey.

Wheelchair Considerations for Individuals with Huntington's Disease (HD)

We highly recommend a wheelchair equipped with neck support, as patients with Huntington’s Chorea often experience difficulty in holding their necks upright. Having proper neck support in a wheelchair can greatly enhance comfort and stability for patients. Please refer to the attached picture for visual reference.

Air Mattress

To prevent bedsores, we strongly advise the use of air mattresses. These can be conveniently obtained from local pharmacies across Pakistan. For patients who are entirely bedridden, the use of an air mattress is essential for their comfort and health.

If a patient develops bedsores, a helpful remedy is to fill plastic gloves with water and place them under their feet or hands, depending on the affected area. This can provide relief and promote healing.

Preventing Falls

Low-Raised Bed: Opt for a low-raised bed to reduce the risk of falls. This minimizes the distance patients need to navigate when getting in and out of bed.
Use Yoga Mats on Floors: Place yoga mats on floors to provide a cushioned surface, which can help absorb impact in case of a fall and reduce the risk of injury.
Cover Sharp Edges of Tables: Cover sharp edges of tables with padding or cushions to prevent injuries in case of accidental collisions. Alternatively, consider removing tables with sharp edges from areas where patients frequently move around.
Cover Bed Sides with Foam: Use simple AC pipe foam to cover the bedsides.

By implementing these measures, you can help create a safer environment for individuals with Huntington’s Disease, reducing the likelihood of falls and associated injuries.

Bathroom Safety in Huntington's Disease (HD):

Removing Glass Cabin: Eliminate the risk of injury by removing glass cabins from showers or enclosures. Opt for curtains or open shower designs instead.
Removing Hazardous Items: Identify and remove any items in the bathroom that could pose a hazard, such as sharp objects, slippery surfaces, or clutter. Keep the bathroom clear of unnecessary items to minimize the risk of accidents.
Keeping the Bathroom Simple: Maintain a minimalist approach to bathroom design to reduce potential hazards. Simplify the layout and ensure that essential items are easily accessible without creating obstacles or hazards.

By implementing these measures, you can create a safer bathroom environment for individuals with Huntington’s Disease, minimizing the risk of accidents and promoting independence and well-being.

For individuals with Huntington’s Disease (HD), a portable inflatable basin for bed baths can be particularly helpful due to the challenges they may face with mobility and coordination. Here’s what to consider when selecting one:

Inflatable and Portable: Choose a basin specifically designed to be inflatable, lightweight, and portable, allowing for easy setup and storage, especially in limited spaces like bedrooms.

Grab the HD Caregiver’s Compass in PDF format.