Inclusion Body Myositis is a type of myositis that usually affects males above the age of 50. It’s symptoms include a progressive weakening of the muscles, usually in the hands, arms, legs, and thighs.
Each patient’s case, however, is different from the other. Some cases progress more slowly while others at a faster rate, especially the much older patients.
Some of the first signs of inclusion body myositis include experiencing difficulty opening jars and door knobs due to weakness of the muscles in their hands. Others notice having difficulty climbing the stairs and suffer from frequent falls while walking.
There is currently no available treatment for inclusion body myositis but there are some ways to better manage the symptoms. If you have a loved one or care for someone with IBM, here are some tips on how to help:
1. Encourage them to exercise. It is very important for the patient to exercise regularly. Among other benefits, exercise will help them keep their muscles strong as long as possible.
It is crucial, however, to consult their physician first before starting any exercise program to make sure that it won’t negatively affect other medical conditions that they have.
Aside from this, getting in touch with a physical therapist is of prime importance so that they learn the specific exercises they need for their condition.
2. Make the house ideal for the patient. Climbing the stairs is one of the challenges for IBM patients so make sure they can easily access everything that they need. If you live in a two-storey house with all the bedrooms on the second floor, you might need a little renovation to have a bedroom downstairs.
Since IBM also makes patients prone to falling and getting up is difficult for them, ensure that the floor is free of anything that would make them trip and is not slippery. You might also want to put stable furniture that they can use for support for getting up when needed.
3. Find activities to enjoy. Although IBM makes the muscles weak and can affect mobility, there are activities that patients can enjoy together with their family. Swimming, for instance, can be both a form of exercise for the patient and a fun activity they can do with their loved ones.
4. Make sure you allot time for self care. Caregivers usually do everything they can to improve the conditions of their loved one who’s living with a chronic illness. Most of the time, it is at the expense of their own needs. It is not uncommon for them to feel guilty whenever they think of doing something for themselves.
But having time for themselves actually benefits both the caregiver and the patient. Getting a massage, reading a good book, and doing other activities they enjoy can help them relax and recover from the stress that comes with caregiving.
Proper communication between the caregiver and their loved one about each other’s needs might be of great benefit to avoid feeling guilty whenever they do things for themselves.
5. Join support groups. Joining support groups like the Myositis Support community can bring huge benefits both to patients and caregivers. Being able to talk with people who are going through the same things not only lets them express what’s on their minds but also helps them learn tips on how to better cope with the condition.
If you or someone you know would benefit from a safe and supportive group like Ben’s Friends’ Myositis Support community, we invite you to sign up here.