You can have quality of life with degenerative disease!

I am guilty of this.  Thinking “this disease is progressive.  Degenerative.  There’s no way adult speech therapy could possibly help this person.  No matter what I do, they will get worse.”   Degenerative diseases are irreversible

I thought it when I first graduated.  Many new professionals do. In fact, some long time professionals do.   

Now, I call it “writing people off.”  Not giving a person your time of day because you are already biased that there is no hope for them. 

You see, just because a person will undoubtedly decline in function, does not mean, by any stretch of the imagination, that they cannot be helped by speech therapy services- or ANY therapy service for that matter.

The more networking I do, the more questions I get asked about what I can do for people, and the more I realize there is a preconceived notion that people with degenerative diseases will never get better.  And that may be true.   They will show continuous over-all decline, BUT that doesn’t mean I can’t improve the quality of their life while they are still living or reduce the burden on their caregiver as the disease progresses

Degenerative Disease.  Progressive disorders.  Neurological disease… “What the heck is this lady talking about?”  

Alzheimer’s.  Parkinson’s, Multiple Sclerosis, ALS, Huntington’s, Myasthenia Gravis, Primary Progressive Aphasia/Frontotemporal Dementia… diseases like those.  They all have terrible prognosis:  decline until they die.  Some disease processes allow the person to be unaware of the progression, like Alzheimer’s.  But some preserve the person’s cognitive abilities, and instead destroy their bodies, like ALS.  They are cruel diseases, not only for the person diagnosed with them, but for the families as well.  

Inevitably a person with a degenerative disease will lose their ability to communicate and/or swallow, which brings me into their lives.  Sometimes, I am their first healthcare professional outside their primary physician.  They might go to their doctor and report slurring of their speech, trouble swallowing, or weird stuff happening to their voice, and get a referral for speech therapy.  When I do the evaluation, I might notice some signs that nobody else did (because I’ve been trained to see these signs) and I might recommend a referral to a neurologist, who has the ability to diagnose the degenerative diseases.  Other times, I see a person after they’ve already been diagnosed by a neurologist and I get to work with them & the neurologist to improve their communication/swallowing.  

Whether the person is late in their disease progression or early, a speech language pathologist CAN MAKE PROGRESS.  Here’s how:

1- Education.  I can provide education on how the disease will affect any of the aspects of communication or swallowing.  I truly believe in informed decision making.  The education might provide the motivation to get affairs in order; healthcare power of attorney, living wills, advanced directives.  It might also help family members to better be able to make decisions about feeding tubes, altered diets, or living situations. Sometimes, I give education on local resources that can assist with situations surrounding degenerative disease; a dietician, a support group, a grocery delivery service, closed captioned telephones, agencies to help in the home, or people to help find a room at an assisted living facility. 

2- Rehabilitation.  Yes, even with degenerative disease it is possible to restore some recently lost function.  No, I will probably not be able to return the person to the level of functioning they had before they were diagnosed with the disease, but IT IS possible to help them get back some of the functioning they had.  Please don’t let anyone tell you it’s impossible.

3-Compensatory strategy training.  When progress is unable to be made due to the type of disease, I can teach the person AND THE FAMILY/CAREGIVERS strategies to make life easier at that moment.  I can teach strategies to help people be understood by their communication partners, strategies to make swallows more comfortable and/or safer.  I can teach memory strategies, safety strategies, word finding strategies, breathing strategies, language comprehension strategies, reading strategies, attention strategies… I’ve got strategies out the wazoo!

Again, these strategies might not restore the person’s function to what it was before their diagnosis.  However, they can provide a sense of control and maintaining lifestyle for quite some time. For example, with an evaluation, I might learn that I can keep a person on their preferred diet consistency by having them use a 3 second bolus hold before they swallow.  They aren’t swallowing the way they used to, but they use this strategy and they don’t need thickened liquids!  It’s a big win.

4-Caregiver/Family Training.  We learn all kinds of tips/tricks to modify environments to improve communication and swallowing.  It is super fun and incredibly satisfying when I get to go into people’s homes and train their people.  It could be training as easy as, “turn off the tv when you are trying to give information.”  There are specific colors that draw a person with dementia’s gaze more than others; there’s ways to arrange furniture for decreasing falls… I love this part, because it helps the patient, but it really helps the family, who are usually over-tired, over-stressed, and overwhelmed trying to care for their loved one with the progressive disease.

5- Alternative Communication Devices/Training:  This is also a really cool service I get to do.  Communication devices.  For a person diagnosed with ALS, it’s one of the first things to be done.  Voice banking, device set-up, and training, so that after the physical ability to use their voice is gone, they can communicate, and their family can still hear that voice; even if it’s through a computer.  There are devices that are activated by using a mouse, stylus, finger touch, or even eye gaze.  It helps decrease the frustration and social isolation that comes from being unable to communicate. I can train the person with the degenerative disease, as well as the caregivers how to modify vocabulary and pages to make it easy and efficient to use.

For a person with a laryngectomy (the removal of the voice box), it might be receiving an electrolarynx and learning how to use it to speak.

6- Assistive Devices:  For swallowing, it could be special spoons, cups, straws, plates.  For cognition, it might be voice recorders, using smartphones/tablets for alarms/alerts to remember appointments or taking medications.  For reading it might be placeholders to help with scanning or use of larger print books.  For writing, it might be a special pen!  We are lucky to live in a world where people are so creative; there are many many many assistive devices to help with communication and swallowing. 

So, if you or a loved one have been diagnosed with a degenerative disorder, I hope this blog gives you hope.  Hope that the future is not as negative as you might picture it to be.  Degenerative diseases DO get worse, but over time.  There are people around that can help you maintain the quality of your life, as long as you will let them.

As always, if you are looking for a professional with a specific area of specialty in your area, and are having a hard time finding one, I will be overjoyed to help you.  Send me a message!

Until next time,

Michelle Hill MS CCC-SLP is a speech language pathologist and Owner/Founder/CEO of Resurgence Neuro Rehab.
She has been performing adult speech therapy for 10 years, specializing in cognition, language, speech, swallowing, and voice. To learn more about Michelle, visit https://resurgenceneurorehab.com/?staff=tom-stafford