Can You Say That​ Again?

By now you might have seen or at least heard of the interview with fellow MS warrior Selma Blair this week. And while I, like I’m sure every other warrior, watched it about 10 times, cried with her, laughed with her, and understood exactly what she was going through. However, I stopped short when she put a name to the speech disorder she is currently dealing with, and I did some digging.

Spasmodic Dysphonia is a rare neurological disorder also known as laryngeal dystonia. This speech disorder is characterized by involuntary muscle spasms of the larynx or voice box. SD causes the voice to break or to have a tight strained or strangles quality and appears mostly in women and can appear between the ages of 20-50.[1]

Since the same muscles, structures and neural pathways are used for both speech and voice production SD is said to be a form of Dysarthria. Dysarthria is a speech disorder caused by neuromuscular impairment. This impairment can cause problems with articulation, speaking rate, and intelligibility.  MS-related dysarthria is more likely to affect your rate of speaking or conversational flow. [2]

Some  examples of Dysarthria include:

  1. Slurred Speech
  2. Scanning Speech or when you speak really slowly with long pauses between words and syllables of words
  3. “Explosive” speech with episodes of loud, rapid speech production.

There are three types of Dysarthria:

  1. Spastic Dysarthria- where experience muscle stiffness or tightness usually the voice is harsh and strained, speech is slow, and there is a reduction of loudness or mono-loudness
  2. Ataxic Dysarthria- where you experience loss of muscle movement or control usually the voice is tremored, speech is scanned, and there can be excess and variable loudness
  3. Mixed Dysarthria- a combination of Ataxic and Spastic

Dysarthria is caused by nerve damage and with MD or Mixed Dysarthria the nerve damage can include the brains white matter and/ or cerebellum, brainstem and or spinal cord. Mixed Dysarthria is the most common in people with MS. Why? Because MS affects multiple areas of your nervous system…Lucky us right?

So what can we do?

Although there are currently no cures for either Dysarthria or Dysphonia, a Speech Language Pathologist can help.

Depending on the type of Dysarthria experienced an SLP can help with exercises. Doctors are currently injecting Botox into one or both vocal folds for Dysphonia. The Botox weakens the muscles in the larynx causing the vocal cords from spasming.

With both speech disorders, a Speech Therapist can assist with helping with producing a better voice.

 

If you need help finding an SLP near you please visit Profind

 

[1] “Spasmodic Dysphonia” www.neurologyct.com/dysphonia.php Accessed 28 Feb. 2019.

[2]”Dysphonia: A Speech- Related Symptom of MS” www.Verywellhealth.com/dysphonia-and-ms-2440867

 

 

What About Kale?

After my diagnosis I like most of the MS population was put on a Disease Modifying Drug. My drug? Copaxone. It was good for a few months and then it wasn’t.  

Post diagnosis, like most people, I researched. I mean, I felt like I was back in school with the amount of researching I did. But this time it was different…I was researching for my life.

Why do I have to take these drugs? It’s a progressive disease. Why can’t I just pour coconut oil over this and prat it gets better. What about Kale?

Well after a few  months of being on the drugs and feeling like total crap I got desperate. I took all the research that I had done and decided that was it! I stopped the injections, bought the oils overhauled my kitchen and threw away everything that wasn’t “healthy”

Processed food? Gotta go.

Diary? Adios

Pork? See ya

There is currently a study that is being done at New York’s Mount Siani Hospital by Dr Iliana Katz Sand, where they are looking at how food might be the medicine to combat MS. This  new study uses the microbiome (a bacteria that lives in the digestive tract) and diet. Mostly they are trying to see if it is possible to reprogram the immune system to inadvertently slow down the immune systems attack on it self.

You might be thinking, well what about the meds? I hear you! I’m back on mine – not by choice. However it doesn’t hurt to put the facts out there. About 70% of the immune system is made up from the gut . So it only makes sense that what we feed it will have a direct impact on how we feel right?

So what are they eating? They are all following a strict Mediterranean style diet. Basically trading in the processed food, dairy and meat for fruits, veggies and whole grains.Why these foods? They are thought to be anti-inflammatory.

I’m not sure why this is such a new concept – the gut and how it affects the entire body, but it is, and the research and studies that are being produced are pretty incredible. The phrase you are what you eat is not just a saying any more folks!

For more information on this study and Dr. Katz Sand press here

I Should Write This Down…..

Brain fog, it’s one of the many amazing symptoms of MS, and it affects nearly all of those with this neurological disorder.

While there are great apps and strategies out there to help you with your memory, when the fog rolls in, it’s no picnic, pun intended. For those of you not familiar with Brain Fog, it can be described as an episode of mental confusion that comes without warning. It can be hard to focus, to recall memories and can cause a decrease in accuracy. [1]

I remember being at work and trying to explain a new procedure to a colleague. In the middle of explaining this new concept (that I came up with, mind you) I completely blanked out. It was as if I had the entire plan written on a white board and someone came and erased it right before I got to tell it! After about 5 15 minutes of trying to calm down and recollect my thoughts, I was able to tell them most of the plan,  but ultimately had to reschedule time with them to go over it again.

That fifteen minutes consisted of me breathing deeply and trying my hardest not to focus on what I was just talking about, or the lack thereof. Thankfully, the person I was meeting with was super understanding.

When MS is involved the cause of Brain Fog is said to be due to the loss of myelin sheath around the nerves. Without this protective layer the brain has difficulty with transporting memories to storage areas of the brain, or retrieving form storage areas. [2]

When MS is not a factor the following can be blamed

Stress

Menopause

Lack of Sleep

Poor Nutrition

Diabetes

Nutritional Deficiencies

Medications

MS or not, either way I think that we can all agree that it sucks! So what can we do? I’ll tell you!

These are my top five tips for dealing with the fog…

  1. Take a break– most times if it comes on strong and fast you might be overwhelmed and get a little out of sorts- step away, stare at a wall, take a walk, whatever just stop trying to make yourself remember. Because news flash- you probably wont.
  2. Tell your Dr. – I admit it I’m not the best at telling my doctor like, anything. I’m the absolute worst. But when I do remember to tell him what’s going on he gives me a solution. Go figure!
  3. Exercise – Get physical. I don’t know what it is (probably Science) but whenever I work out, even if it’s for 20-30 min I feel better and the fog doesn’t come as much.
  4. Talk it Out- I remember when I was going through a lot of changes, the fog being one of them. I mean- I can be a little ditzy some times, we all can. But, when the fog came the first few times around I was like, um…so this is horrible. This needs to stop. I have shit to do! Mostly, I was just embarrassed. Finally, I talked to someone I trusted, who doesn’t even have MS, and just talking about it made me feel better. Like it somehow made it not such a big deal. So… talk it out!
  5. Mind games – Its like exercise for you brain. Seriously guys, keeping your mind sharp is the biggest way to help with this. So whether it is reading, using the an app like Luminosity, or doing crosswords, the more you can use your brain the better.

For more information on Brain Fog, check out the links below:

WebMD

Livinglikeyou

Health line

[1] http://www.nutrex-hawaii.com/common-brain-fogfatigue-causes

[2] https://multiplesclerosisnewstoday.com/blog/2016/09/06/feeling-your-way-through-ms-brain-fog/

Stop In The Name Of Science?

In my two long short years of having MS I have been on two different drugs. Mainly because I decided to quit my first drug, why you ask? I’m a rebel.

Really, I was just tired of sticking a needle into my then, very fit body. So, after give or take 6 months of stabbing myself I decided this isn’t for me, said good-bye to the needles, and hello to drug free existence. It was great, at first. But 6 months of trying everything other than drugs, resulted in me shuffling into my Dr’s office, and him swiftly prescribing what I’m currently taking, Tecfidera.

Not a year later I came across a study and thought I would share.

Here’s the deal. A study was done where a group of people with Secondary Progressive Multiple Sclerosis, and Relapsing Multiple Sclerosis were taken off their DMT’s, (Disease Modifying Drugs). For those of you not in the know, or that might need a reminder – a DMT is what is needed to help those with MS help live their best lives. The MS center at Wayne State University defines DMT’s, as a drug that can modify or change the course of a disease. In other words a DMT should be able to reduce the number of attacks and/or also slow down the disease from progressing. [1]

 

Currently there are 15 DMT’s on the market with many still being tested and tried. There’s even a study going on in Canada using an antibiotic originally used for acne now being used for Relapsing Remitting MS, more on that one later! Now before you start fantasizing about your soon to be drug free life, lets talk more about this study overseen by Gary Birnbaum, MD – a MS specialist in the Minneapolis area.

“In most people with RMS, patterns of disease change over time. Acute Inflammatory changes, manifested as new lesions on central nervous system (CNS) magnetic resonance images (MRI’s) or as clinical relapses, decrease with an associated decrease in acute inflammation pathologically. There may come a time when an individuals disease no longer requires medicate to control acute inflammation.” [2]

Pretty interesting stuff huh?

Who participated?

All participants were under the care of Dr. Birnbaum at time of study.

The ages of participants of the study spanned from 49- 61, the majority being women, and were separated into two groups. 77 patients were in Group A, which consisted of patients whom had RMS previously but showed no acute CNS evidence for 2- 20 years and were asked to stop their DMT’s. And 17 patients were in Group B – that consisted of patients currently with RMS who voluntarily discontinued their DMT’s.

Both groups were scheduled for MRI’s, and clinical evaluations for 1 year after cessation of drug use. The minimum was 1 year of evaluation after cessation of drug use.

How was it measured?

In order for acute disease to be considered reoccurring there had to be a change, either on physical examinations or from MRI’s. Physical examinations if new symptoms that could be characterized as MS symptoms would occur – i.e. lasting longer than 24 hours without any evidence of virus, etc. MRI- detection of new lesions from imaging.

It should be noted all participants used the same imaging machines and their scans and all scans were looked over by the same neurologists.

Those that showed either of these characteristics were offered their DMT drugs.

And the winners are?

Group A, who now have Secondary Progressive MS, had a 11.7% recurrence of disease, with some having clinical changes and new lesions showing on the MRI, others although stable also had new lesions

Group B, who are Remitting MS had a 59% recurrence within 1 to 2 years of stopping DMT’s.

From this study we can gather disease progression makes a difference, but can age? If should be noted that participants in Group B were younger than the participants in Group A. So in answer to the question, in this case, yes it matters.

Older individuals, with no clinical or MRI evidence of RMS for 2 years or greater can stop taking their DMT’s with a very high chance (90%) of non-recurrence. This and other studies show that people who have RMS number of relapses over time diminish, along with MRI manifestations of lesions. Another interesting fact is that in most autopsies of older patients with MS show almost no signs of acute inflammatory changes, or lesions, according to pathological studies. But I’m getting off subject. The study came to the conclusion that it could be safe for older patients to discontinue their DMT’s if there are no signs of acute central nervous system inflammation for 2 years, without fear of recurrence of disease.

Whether you decide to stop your meds or continue to stay on them it is very important to seek counseling from your doctor. If you don’t currently have a doctor, the best place to start is with the NMSS.

 

 

 

 

[1] http://mscenter.med.wayne.edu/pdf/disease_modifying_therapies_for_ms.pdf

[2] Birnbaum, Gary,MD. “Stopping Disease- Modifying Therapy in Non relapsing Multiple Sclerosis, Experience from a Clinical Practice” International Journal of MS Care 19.1 (2017): 11-14 (Print)