Is It Possible to Live Independently With Spinal Muscular Atrophy?

Spinal muscular atrophy (SMA) is a debilitating condition of the neuromuscular (nerves and muscles) system that can result in extreme challenges for many people diagnosed with the condition and their family members. This is particularly true when it comes to living independently with SMA. People who are diagnosed with SMA require a wide range of multi-disciplinary medical and supportive services to establish and maintain independence.

Maintaining functional mobility is the primary aim of long-term supportive services to help people with SMA maintain autonomy, but what about independent living? Is it possible? Establishing housing and setting up the many services needed can be a real challenge, but it can be done, according to those who have already embraced the endeavor.

What Type of Supportive Services Are Required?

To live on one’s own with SMA, a person must employ many services, which may include getting assistance from:

  • Housing authorities such as public housing or other government-funded agencies to help locate and pay for low income and/or handicapped accessible housing
  • Social workers to advise on available programs and resources
  • Personal assistants to help with bathing, dressing, and more depending on a person’s level of functioning
  • Occupational therapists to help with planning for adaptive equipment such as ramps, lowered light switches, intercoms, ceiling hoists and more
  • Mental health professionals to help people with SMA cope with the many stressors of going through the process of obtaining independent housing
  • Building professionals to equip a home with all of the necessary modifications needed, such as wheel-chair accessible ramps, countertops, showers, wet rooms, and more
  • Other multi-disciplinary healthcare and supportive services such as home care nurses, physical therapists, agencies that assist with bill pay, and more

A wet room is a totally waterproofed bathroom with an open shower area that is level with the floor for easy access. This can be a good option for those with SMA.

Mental Health Services: An Important Tool

Mental health professionals, such as counselors and therapists, may be helpful for people with SMA who are experiencing the many stressors involved in navigating the system. This is particularly true during a huge transition (such as moving into independent housing).

Counseling and other mental health services can help those with SMA learn coping mechanisms to deal with emotions (such as anxiety, worry, fear and more) that are common during a transition, such as obtaining independent housing.

However, according to a 2019 study, many people with SMA reportedly had trouble implementing mental health services in a timely manner. They felt their needs were unmet when it came to professional mental health services, due to the difficulty in navigating the system, in order to get access to such services when needed.

The study, published by Orphanet Journal of Rare Diseases, applied a qualitative measurement to how adults with SMA experience the effectiveness of the healthcare system in general. The study authors concluded that mental health care was a particular area where the study participants (adults with SMA) felt that their needs went unmet, “particularly during times of fear and frustration in response to loss of function, social isolation, stigma, and questions of self-worth," wrote the study authors. This was not due to the study participants receiving inadequate mental health services, but, rather due to the fact that they were unable to navigate the system in order to obtain access to counseling or therapy when they felt they needed it most.

In contrast to the general healthcare system, where the study participants felt there was inadequate care received, "mental health was perceived as integral to maintaining well-being, yet timely access to appropriate mental health services was also highlighted as an unmet need," wrote the study authors.

"Understanding the lived experiences of people with SMA, particularly during times of transition, such as during a move, or when establishing independent housing, is critical to advancing health policy, practice and research. Future studies are needed to quantify the prevalence, burden and impact of mental health needs whilst also exploring potential supportive and therapeutic strategies," concluded the study authors.

Being aware of the important role that mental health services play in supporting a person with SMA may empower those who seek to live independently. The key is to find out ways to successfully navigate the healthcare system to be able to employ mental health services when they are needed. It may be very helpful to find a social worker who is familiar with the complexities of living with SMA, who also has experience in navigating the mental health system.

Study on Parents' Worries About Kids with SMA

Not only do adults with SMA often worry about establishing and maintaining independence, according to a 2015 study, parents often worry about their children and wish for them to have an independent life, while weighing the odds against it.

The study authors wrote: “The mother of a 17-year-old with Type II SMA was proud of her daughter, who excelled in school and was applying to college, but she worried about getting her the supportive care she would need to aid her to dress, toilet, and shower while away at school.”

Tips on Living Independently With SMA

So, how does one go about living independently with SMA? Here are some tips from the experts (research scientists, as well as a 42-year-old woman who has accomplished just that).

Joan, a woman living with SMA went on the record to describe her personal experiences when she flew the coop so to speak. Joan has Type II SMA and she chose to move out of her parents' home to live alone in a private residence at age 42.  Joan is now living in her own home, and she has many tips for those with SMA looking to establish an independent lifestyle; she believes it’s important to share her experiences to help others.

Tips for living independently with spinal muscular atrophy include:

  • Tip #1. No two people with SMA are exactly the same; everyone has different personalities, various strengths and weaknesses and different levels of functioning. It’s important to keep that in mind, particularly when getting advice from others who are living independently. Take the advice that applies to your specific situation and leave the rest.
  • Tips #2. Work closely with all tradesmen that are helping to build out (adapt) your new residence to fit your need; make sure you discuss exactly what will be done before the job is started so everyone is on the same page as far as your expectations and needs are concerned.
  • Tip #3. Educate yourself so you know what benefits you are entitled to; don’t depend on the complexities of government organizations to do everything for you or to inform you of programs/benefits you are entitled to. In other words, do your own research.
  • Tip #4. Do a walk-through of your home with your occupational therapist and take the advice of the professionals when it comes to asking for the adaptations you will need. Chances are that you may underestimate how helpful many types of equipment and other adaptive products can be. For example, don’t depend on personal assistants to do all the lifting when transfers are required. Even if you don’t feel you need equipment such as a hoist, if your therapist advises it, go ahead and get one (or two, one in the bedroom and one for the bathroom). Remember that the goal is to maintain as much independence as possible. Plan closely with your therapists to ensure that you adapt your living environment specifically for your needs.
  • Tip #5. Manage your own finances and employ help yourself; don’t allow others to interview or hire your personal assistants (PA) if possible, do it yourself. Getting great PA’s is key to living well independently. Of course, this may not be optimal for everyone, as stated in tip #1, everyone is different and if you find that you need help with hiring and employing supportive service, ignore this tip.
  • Tip #6. If you find that your needs are just too great to be able to live by yourself, that’s OK. There are plenty of great structured, all-inclusive living facilities that offer meals, on-staff healthcare professionals, and more.
  • Tip #7. Share your experiences with others with SMA who are hoping to live independently. It’s inspirational for people to discover that others can and have done it before you.

A Word From Verywell

There are challenges for those with spinal muscular atrophy who wish to live independently, and these will differ depending on your individual abilities.

Joan, who is living on her own with Type II SMA, offers this wisdom, "My advice would be, please don’t ever feel pressured into living independently, but again don’t dismiss it. It does give you so much freedom because you are in control. It is frightening (or maybe that’s just me) but you soon adjust to things. I don’t know anyone fussier than me, so trust me, anyone can do it!!”

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  1. Wan, H.W.Y., Carey, K.A., D’Silva, A. et al. Getting ready for the adult world: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being. Orphanet J Rare Dis. 2019;14(1)74. doi:10.1186/s13023-019-1052-2 

  2. Qian Y, Mcgraw S, Henne J, Jarecki J, Hobby K, Yeh WS. Understanding the experiences and needs of individuals with spinal muscular atrophy and their parents: a qualitative study. BMC Neurol. 2015;15:217. doi:10.1186/s12883-015-0473-3

  3. Spinal Muscular Atrophy UK. Joan living independently. Updated 2020