How can a Speech Therapist help an MG warrior?

A Tuff Pill To Swallow

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Please note that this post has been split into swallowing and speech difficulties in order to allow for easy reading.

Post 1: Learning how to swallow in times of autoimmune flare

Before I was diagnosed, I had great difficulty swallowing. My diagnosing Dr. mentioned that it would start to improve once the medication started to take effect. After 6 months I could see improvement, however, I was still choking on a cup of tea and taking an hour eat half a sandwich which lead me to feel highly frustrated.

My friend Stephanie was studying Speech Therapy at the time. After telling her my concerns she suggested a few practical steps which I still use today when I am having a bad day. Stephanie now owns her own private practice and was kind enough to answer some questions that I feel will be beneficial for MG warriors to know. My personal comments are added in italics.




Why would an MG client see a speech therapist?

From the literature, it can be said that 60% of patients with MG experience speech and swallowing difficulties at some point. Often this is not the first presenting symptom, but it can be the straw that breaks the camel's back, so to speak. It is something so frustrating that it finally pushes someone to obtain the diagnosis they need.
 

What do you assess for when it comes to swallowing? 

A thorough swallowing assessment gives the therapist the following information:

- oral-motor functioning (how the oral muscles are working together)
- food/liquid consistencies that are better or worse
- is the client at risk for aspiration (choking)


The therapist may then suggest a further study in order to correctly diagnose all the areas of difficulty so that a more detailed treatment plan can be prescribed. Further studies can either be a modified barium swallow which takes place in an x-ray department. The patient is given different consistencies and volumes of food mixed with a contrasting agent called barium. A fiberoptic endoscopic evaluation of swallow (FEES) can also be used. This is a bit more uncomfortable as it requires the scope to go through the nostril into the pharynx while the patient swallows.


There are essentially 4 phases of swallowing that speech therapists look at:

1.    Oral Preparatory Phase: This includes the awareness of food entering the mouth, chewing the food and holding liquid in the mouth ready for the swallow
2.    Oral PhaseThis is essentially the movement of the tongue as it propels the food backwards to the point where the swallow is triggered
3.    Pharyngeal Phase: This starts when the swallow is triggered and ends when the food enters the upper oesophageal sphincter on its way into the stomach.
4.    Oesophageal phase: This is the food's journey through the gut and isn’t really a speech therapist's area of expertise.

Dysphagia: This refers to disordered swallowing. It is important to get this thoroughly assessed by a speech therapist. There may be a few different avenues for assessing the swallowing function.


What tips can you give to someone having difficulties with the above?

The strategies given depend on the difficulties that present in these different phases of swallowing. It is also dependent on which consistencies are causing the difficulties.Due to the fluctuating nature of MG, it’s hard to pin down a set list of sure-fire tips and tricks. From what I’ve learnt about MG, I have become more aware of a few common symptoms and some things that may help you out. Again, it’s important to have your swallowing checked by a professional and get a custom made therapy plan.

Difficulty controlling liquids: This may present as coughing when drinking

o Use a chin tuck: with the liquid in your mouth, put your chin to your chest and then swallow.


I like strategies that are simple and help me maintain my independence. I use this all the time, even when I am only slightly weak. Chocking on your cup of coffee while counseling a client does not come across well!This trick enables me to prevent this situation by simply pausing and looking down at my notes or coffee cup and swallowing.

o Thicken liquids: there are several thickeners available at most pharmacies. These thickeners are added to liquids. They have their pro’s and cons and can make the liquid a bit gross and I therefore rather restrict liquids and implement the chin tuck for thirst.

While this seems extreme, I can promise that the thickeners are better than being dehydrated and needing a drip. I have also found that cooler liquids tend to be swallowed with more ease.

o Stick to distilled water in times of weakness and maintain your oral hygiene in order to prevent germs from being transported if something does slip down the wrong way.

With regards to oral health: It is essential to notify your dentist about your MG diagnosis when booking an appointment as you will need a longer appointment in order to rest during the consultation. Chewing gum also requires a lot of effort for oral motor muscles. I recommend melt in your mouth breath fresheners (i.e .smints) or mouth sprays instead of chewing gum. Electric toothbrushes can assist with spoon conservation when feeling fatigued.


• Difficulty chewing and managing solid consistencies



Stick to purees: I know that they aren’t the most appetizing foods, but you are only limited by your imagination! There are some great easy and quick options (i.e Woolies baby food packages. I know that it sounds terrible but their lamb and veg sachet is delicious!). The internet is also full of great resources on yummy puree options. If you live in Cape Town check out Umatie foods. It's a kiddie's food brand, but they have a variety of consistencies that may suit your needs.

I have found that swallowing solids in the mornings is the most difficult. I have found some great shakes from Faithful to Nature that I don't need to peg my nose to drink. I suggest the chocolate shake by Phyto Pro. I usually mix it a bit thicker than suggested and drink it while eating my other breakfast. This is also a clean vegan pea protein which is low in carbs. 

o Have small meals more often instead of one big meal:

This helps eliminate fatigue on the muscles needed as well as ensuring that I get enough nutrition in order to keep my energy up. I usually have a lunch box filled with snacks which are easy to eat so that I can eat smaller meals at my own pace. When dining out, I usually get a take away instead of forcing myself to finish my meal.



  •        Timing:

I also try to time my meals with my medication in order to give me the best chance at swallowing. Remember Mestinon can take up to an hour to have an effect on your muscles.
If you struggle with swallowing medication, ask your doctor if you can get smaller doses i.e. 4 x 25 mg tablets instead of 1 huge 100  mg tablet. Some medications are also available in liquid form.



Are there any exercises that can help?

There are various reasons why these things may be happening. One is reduced laryngeal elevation and another is delayed triggering of the pharyngeal swallow. I wouldn’t recommend particular swallowing exercises for a patient with MG especially when in crisis, due to the fatiguing nature of the condition. There are exercises that can improve your baseline swallowing function, but these need to be done under supervision and when you are medically stable. Regular follow up with a speech therapist would be recommended. This is particularly important to prevent chest infections.



Contact details:
Stephanie Wainwright
Speech Language Pathologist

To find a speech therapist in your area please contact SASHLA 


Comments

  1. Thank you for the tips. I have found that instead of having a liquid going straight from the glass or bottle to the back of the throat and chocking.... you can keep it in your mouth for a second or 2, like when you inflate your cheeks with air, but with a small amount of the liquid instead.. and then down it with confidence. It works more than half the time for me. I am able to drink a full bottle of water in a short time this way and only cough and choke once or no times at all if done right . I also advice you to practice it somewhere you can spit and cough and choke without concerns... like on your backyard or something, with no one watching hopefully. Please make sure to drink at least a full bottle of water when you are on the effects of the medication. Take advantage of those moments to drink your water everyday. Its very important since we are constantly taking pills, our body really needs it. It is not easy, it can be frustrating, but we have to get used to it, keep fighting the mg, dont let it beat you,. Keep strong people, don't loose hope! (:

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