defeatparkinsons

Stay Calm – You Got this!

I love traveling but absolutely hate packing all those medicines; especially when I will be out for a week or longer. Typically, I carry my own stylish Vera Bradley pill box which carries enough medications for day to day activities even up to 3 days of away stay. However, because like many of you, I take close to 20 medications regularly (my poor liver). Some days more, if I have other problems like a sudden migraine. Hence the problem of remembering all the medications that I might need like anti-inflammatories for that back pain, or extra muscle relaxants in case of severe spasm after sitting on a plane for a long time. size-os

So, I have a small travel bag – which you should also get and stock with all the essential medications required for daily functioning such as Stalevo, Rytary, Neupro, Mirapex, Azilect and so on. I put all my bottles to ensure I will always have enough just in case unforeseen circumstances occur and travel is prolonged. Within the bag you should always keep a list of all of your medication names, doses, prescribing doctors name along with the pharmacy name, and phone number in case you forget something while away. Having a list also comes in handy, as I experienced recently in attempting to fill my mom’s medicines after hurricane Harvey.

If you use national pharmacies it is easier to transfer medications from one city or state to another in case of emergency without much problems. This may not be the case if traveling internationally. In those cases having a bottle with your name and medication as well as a list may expedite the process of granting refills by an outside physician who is not otherwise familiar with your care or diagnosis. Which also brings me to the point of always carrying a letter from your doctor stating diagnoses especially if traveling abroad.

If you use local pharmacies another pharmacy outside of your area can still get a hold of your information, but will require some time and effort on both of the pharmacist and on your part. After hurricane Harvey, there was a long line of patients attempting to get their prescriptions transferred and filled from affected areas in many towns across Texas. Getting medications can be more challenging and take longer to do in case of disasters as we have seen recently. This is because the local pharmacies in affected areas may not be operating to give info to the pharmacist you are trying to use nor your doctors available as was the case after Irma, Harvey and Maria. Since doctors are sometimes needed to confirm the medications that you are on or require. Fortunately, my mother uses Kroger a larger chain which has a store in town which can pull information from its national / regional database. Yet, after my mom got one of her medications, she insisted this was not the right one so she refused to pay for and take it home. Had she had her card and list of medications she would have known as would I that was she was given was the correct one and gotten it for her. So make sure a loved one also has a list just in case it gets lost, misplaced or damaged. med list

Also, prioritize medications in order of importance and ease of acquisition. Are these something you can buy over the counter -if so not such a big deal if you forget? Are they available in areas that you are traveling to? For instance not all Parkinson’s medications and formulations are available around the globe. Do your research and make sure you take extra if traveling to areas where your medicine is not found.

If forget something that you can buy over the counter or readily available by visiting a pharmacy then you must go to the ER in order to obtain. Once again easier to do so if have proper documentation.

What if you forget a medication which comes from another country? As I did when I went to Philadelphia recently. I forgot my domperidone because I took a dose the morning before departing and left on the counter rather than putting in my purse. You can either find a substitute or find ways to decrease the need for these medications by altering life style, diet, increase water intake, finding natural remedies like peppermint tea for short term or incorporating all of the above. These techniques might get you through in a bind but will not be effective long term. But important to note that you may still suffer consequences of not having medication which may take several days to recover from; as I did after my travel experiencing severe gastroparesis. If it’s a medicine essential for Parkinson’s main symptom management like a dopamine or dopamine agonist do not try to do without because consequences can be detrimental and even deleterious.

Do it with passion or not at all: By Maria De Leon

Source: Do it with passion or not at all: By Maria De Leon

Spasmodic Dysphonia Diagnosis & Treatments : By Dr. De Leon

Source: Spasmodic Dysphonia Diagnosis & Treatments : By Dr. De Leon

Spasmodic Dysphonia Diagnosis & Treatments : By Dr. De Leon

“The most precious things in speech are the pauses..” Ralph Waldo Emerson

Since September is National Dystonia Awareness Month, I thought I would talk about a symptom that affects many in our population known as spasmodic dysphonia (SD) This is a rare disorder of unknown etiology; it is a type of dystonia that affects the laryngeal muscles causing involuntary sustained muscle contraction of the vocal cords. There is a co –morbidity between SD and ET of 25% more than seen in normal population. People may have both essential tremors (ET) affecting vocal cords as well as dysphonia of laryngeal muscles. Furthermore, patients who exhibit this type of dystonia have a 7% risk of developing dystonia in another part of the body.

In order to obtain proper treatment one must first get correct diagnosis.

The person that diagnosis this condition can be an ENT physician as well as a neurologists. However, because there is a higher incidence of having other dystonia’s and /or tremors one usually also requires follow up and treatment by an MDS. It is important to note that SD, a type of focal dystonia, can be its own disease or be a symptom of another neurological disorders like generalized dystonia, ET, Parkinson’s and Maggie’s syndrome.

Since this s a voice disorder it causes impediments in speech and communication which can be both embarrassing and also socially devastating as when the dysphonia is so severe there is no perceptible voice. This lack or inability for one person to communicate with another verbally can lead to depression and social isolation. Hence, it is imperative to get diagnosed properly and seek right treatment as to not experience social stigma.

Spasmodic dysphonia is a lifelong condition commonly affecting women especially between the ages of 30-50. This disorder can lead to voice breaking, being tight or strained. This type of dystonia can interfere with word elocution to complete detriment and speech impediment if no audible sounds are made.

Researchers believe it may be due to problems in the basal ganglia hence associated with other movement disorders. However, it can start after a cold, flu, injury to voice box, trauma/surgery, and even stress.

There are two common types:

Adductor spasmodic dysphonia– this is the MOST COMMON type causing sudden involuntary spasms triggering the vocal cords to stiffen and slam shut. The spasms interfere with the vocal cord vibration hence diminishing the quality of sound. Speech sounds are strained and effortful. Of note; these do not occur when singing, laughing, speaking at high pitch, or speaking with breathing in.

Abductor spasmodic dysphonia-this type causes sudden spasm causing vocal cords to open and since vibrations cannot take place when vocal cords are apart sound is difficult. Speech is very weak, breathy, whispery, and quiet. Of Note: these do not occur with laughing or singing.

So how do you treat-

Botox is the mainstay of treatment although it is not a cure and works best for adductor dysphonia. Having a team of specialist as I mentioned above as well as a speech pathologists is of great benefit. However, voice therapy per say has limited use unless the dysphonia is due to a hyperfunctional behavior. There are also a couple of surgeries that have been investigated and still being evaluated for their efficacy. These are called thyroplasty (which essentially require remodeling of the thyroid cartilage shape to relax and move the vocal cords somewhat laterally (to the side).

However, if you are experiencing spasms and pain or difficulty singing, or at high pitch need to be evaluated by ENT and make sure there are no masses or inflammation caused by reflux. Sometimes asthma can cause whispery speech because of inability to take in air. May also require visit to pulmonologist.

As with everything else make note of when symptoms occur, what triggers it, what makes it better, how long they last, relation to food intake (some people are extremely sensitive to pumpkin, and pumpkin seeds, as well as peanuts), symptom relation to dopamine intake, if have PD.

Sometimes drinking warm teas (ginger with honey and lemon) helps ease and improve symptoms particularly if inflammation caused by irritation of vocal cords or virus. [This is my favorite remedy! works great plus ginger is good for digestive system.]

Recommendations to make speech better:

Avoid noisy environments- damages vocal cords – (also means talk only within your capabilities)- I have to remember this one because I always lose my voice in a crowded room.
Stay hydrated- especially if doing public speaking- I have to drink twice as much water when I speak!
Avoid irritants like alcohol, tobacco, substances that dry the throat.
Avoid screaming
Avoid clearing throat forcibly
Sleep well.
Treat TMJ

For more information: https://www.dysphonia.org – National Spasmodic Dysphonia Association

Sources: http://www.hopkinsmedicine.org/healthlibrary/conditions/otolaryngology/spasmodic_dysphonia_85,P00468

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146022/

http://emedicine.medscape.com/article/864079-treatment