The coronavirus pandemic’s effects have wormed their way into every aspect of life, and those of us who spend a lot of time engaging with the medical world know that our routines have been upended.
As the lockdown drags on, many Parkinson’s patients have found their speech and language therapy routines disrupted. A press release by Parkinson’s UK reported on a survey by the Royal College of Speech and Language Therapists in the UK which followed patients with Parkinson’s disease. The survey asked about the impact that the coronavirus restrictions had on their access to speech and language, and how that impacted their overall experience during the year.
They found that while patients found speech and language therapy enormously enriching, the maladaptive nature of the therapy to the virtual world has left many patients dismayed; with reports that lesser access to the therapy had great impacts on their own mental health and that of their caregiver.
Parkinson’s Disease
Parkinson’s disease is a rare neurological disorder that affects the central nervous system, progressively eroding a person’s movement. The disorder usually only onsets later in life, with most patients beginning to see symptoms after age 50. It begins with a slight tremors in hands on one side of the body before it progresses into stiffness, slurred speech, poor balance, slow movement, difficulty moving about entirely, and in later severe stages, the inability to walk and hallucinations. While there are symptomatic treatment options such as dopamine substitute, carbidopa-levodopa, and MAO-B inhibitors, as well as surgical options, there are no treatments of cures for Parkinson’s disease.
Parkinson’s Patients and Speech and Language Therapy
Parkinson’s patients slow decline in movement causes a number of impending problems and a long list of doctors may be needed to help with degrading mobility. As the disease progresses, many patients grapple with the loss of control over their speech and communication. As patients lose control of their muscles, their self-expression becomes more limited. This training can help enrich patients with methods to continue communicating as their disease onsets.
For this reason, many patients seek out the help of professionals, speech and language therapists, who help with not only speech but also with non-verbal communication, including guiding patients through exercises on body language and facial expressions. They also give guidance on motor skills related to communication, including tips on swallowing and placing an emphasis on types of communication where they may be losing their skills.
In a Parkinson’s UK Press Release, the clinical lead for therapy at UK Parkinson’s Excellence Network, Fiona Lijndop, said,
“There has been a huge impact from the pandemic on both individuals with Parkinson’s and services offering therapies to help people manage their condition.”
She continued,
“Some speech and language therapy services have had to focus solely on swallowing problems, leaving individuals with speech problems with no access to assessment, advice and intervention. It is vital that services for speech and language therapy for people with Parkinson’s are restored as soon as possible, with robust policies to protect access and delivery.”
The Survey
The survey was taken by 97 participants, a third of which had Parkinson’s disease. The results illuminated the great benefit of speech and language therapy, and then the dampening of the lockdown restrictions. They found that patients largely had access to this therapy diminished and the impact greatly damaged their own and their caregiver’s mental health and relationships.
Speech and Language Therapy During Lockdown
While 76% of participants reported that speech and language therapy improved their lives and 29% said it improved their caregivers lives, the pandemic’s restrictions made many drop out. 52% reported receiving less speech and language therapy in the first lockdown, and 44% did not get any of this therapy at all. A third of respondents did not receive speech and language therapy in person.
While the therapy adapted to the virtual world, the nature of the physical and subtle teaching made it less adaptable than most.
2 in 10 of respondents reported liking the therapy’s continuation by phone, and 6 in 10 said it was okay. However, a fifth of respondents didn’t like it at all or couldn’t do it.
Video communication was more popular; 57% of respondents reporting liking it, and 32% reporting it was okay. 11% still couldn’t do it at all.
A third also reported that it was difficult when their therapist wore a mask during the session.
The Toll on Mental Health
The survey also asked about the impact having less speech and language therapy had on their mental health during the pandemic. They found how much patients need this therapy.
60% reported it worsened their mental health, half reported it worsened their relationships and home life, and 60% reported the lack of speech and language therapy also worsened their caregiver’s mental health too. Half of respondents also reported their lack of therapy had also made their caregiver’s social life worse too.
The researchers at the Royal College of Speech and Language Therapists found an important friction point for Parkinson’s patients that needs fixing. Recognizing the great benefit of speech and language therapy should excel it to the top of the health-care practitioner’s to-do’s. Communication is key for connection, and these patients need their therapists to keep up healthy connection for as long as they can.
