Hi. My name is Luigi Agostini. I am an audio professional in Livorno, Italy with over 40 years of experience in the industry. In April of 2010 I was diagnosed with Young Onset Parkinson’s disease (YOPD). While

symptoms are similar to late onset Parkinson’s Disease, it is important to understand the challenges YOPD individuals often face in terms of finances, family, and employment.

Indicators may include motor  

–       Tremors of the hands, arms, legs, jaw and face

–       Rigidity of the limbs and trunk

–       Bradykinesia

–       Postural instability or impaired balance and coordination.

Non-motor symptoms may include:

–       Depression

–       Sleep disturbances

–       Changes in memory and thinking

–       Constipation or urinary problems

How Is Young-Onset PD Different?

People diagnosed with YOPD have a more frequent family history of Parkinson’s disease and a longer survival. People living with young-onset PD may experience:

–       Slower progression of PD symptoms

–       More side effects from dopaminergic medications (not my case, luckily)

–       More frequent dystonias (cramping and abnormal postures) such as arching of the foot

Why Is Distinguishing Young-Onset Parkinson’s Important?

Socially, people who are affected by PD at a young age experience the disease differently — they may be at a different stage of their career and often have less time to engage in their own care. They may also have children (I had two before the diagnosis) and have questions regarding passing on PD genes (again luckily it is not my case). Younger brains also have a higher neuroplasticity potential which allows the brain to handle and respond to disease and therapy differently. If diagnosed with young-onset PD, it is important to seek treatment from a movement disorder specialist or a neurologist with expertise in movement disorders. Each person’s treatment is unique and can require fine adjustments of multiple medications. Deep brain stimulation remains a surgical option for people with young-onset PD.       

Despite this, with the help of my family I was able to reorganize my life. I am doing installations on very important occasions in Italy and preparing 15-20 students each year to face the international market working as sound designers, producers and performers.”

So, believe me when I say, the first thing to do if you have similar problems is to accept it as one of the many difficulties that any professional could have today in the business. Do not feel like a particular or strange kind of person. You are like the others, and the others must accept your limits and welcome your potential because this is exactly what you have to do with them. They could be insensitive, annoyed, and even impolite with you exactly as you can, because we are all humans, after all. Don’t demand special treatment or regards and be tolerant with them, they are individuals just like you. If you have problems with movements and moods, they could have problems in empathy or understanding. Both of us are not disabled persons but just humans traveling in this period of time so difficult and demanding (a pandemic and a war after an economic crisis).

We should live according to the philosophy of collaboration, helping each other. Forget the old competition concept, share your knowledge and try helping others as much as you can.

You should be ready to fight against any architectural or social barrier someone could put in front of you or people in conditions similar to yours. But do not have a “victim” attitude if you don’t want others to consider you so…

Still remember that you clearly need to take care of yourself first. When you take a flight and the attendants tell you that if the oxygen masks come down, you must first put on yours before helping others.

The purpose of this letter is to suggest some solutions or “workaround” that I have found useful when I had to modify my habitual way of living and working.

–       Tremors of the hands, arms, legs, jaw and face        

The most important computer peripheral I have adopted for my business is my trackball. The tremor of my right hand was making it almost impossible to use a traditional mouse. The possibility to have control of movements performed by a tool fixed on its axis position, plus the use of my left hand which is the one less affected by the tremor, has permitted me to continue to use Max MSP even with PD.Thinking of all the cables I have to connect precisely using the famous software, it sometimes feels to me like I have to put back a

 plate of our spaghetti alla carbonara into the box 😉

–       Rigidity of the limbs and trunk

Always use a comfortable seat and be sure to have a wide space to lay your forearms. Personally, I find it more practical to use a notebook PC on a table. My chair is compliant with the Italian Laws in terms of security in working spaces (in Italy we call it 626 in short, I do not know what the equivalent laws in other countries are, sorry). Make some pauses while working at the PC even if it seems you will lose the inspiration or forget forever the perpetual energy law you were close to understanding. A perfect balance between work hours and hours of physical activities is fundamental to be able to produce without worsening your already not-so-good health conditions.

–       Sleep disturbances

( Warning! The writer is not a doctor or a therapist and does not assume any responsibility for the correctness of his statements or for the incorrect use that may be made of them…)

If you need to program, mix, master or do other work that needs concentration, silence, and quietness, wake up early in the morning. If you take levodopa and other typical drugs for PD those are limiting your brain activities in order to be effective (they must do it), but in the morning, their concentration in our blood is at its typical minimum level, and you will feel more lucid and able to stay focused. It works for me, but I am probably making a mistake, I guess…  

I can only say that I find relief and help in music, in particular in rhythm. Music with a metronome time of 70-90 bpm helps me a lot in controlling the freeze or the off times. But I have been a musician since my first years of life, so I guess the relation between the most beautiful art and my brain is a long love story…

In any case, if I forgot to mention anything or if I can be of any help, despite the low level of my English language, you can contact me by email mentioning this letter. I’ll be happy to help as much as I can, unless you ask me to make a new world record in any Olympic sport! 🙂

All the other symptoms, especially the ones related to the movements, can be a big problem and they will probably limit my operability in the next future, so I prefer not to talk about those in this occasion. They are very subjective and different in entity and frequency and my workarounds are something extremely personal and subjective and related to a particular phase of my PD’ development stage.

Best,

Luigi

    “I am a man with an obvious disability among so many men with disabilities who are not seen.” Ezio Bosso