Updated: May 9, 2021
Hello fellow PD warriors and my beautiful readers,
I must apologise, I have been trying to cope with a few setbacks. So, I had to take some time,. I have been trying to work on this post for a while. After all the writes and rewrites, I finally felt a little okay about this post.
It's been a stressful few weeks, many changes, too many decisions, some sadness, being kind to myself and learning to love myself more.
Coping with Young Onset Parkinson's Disease (YOPD ) is one major hurdle because it comes with numerous symptoms. It sometimes feels like someone is playing a nasty prank. Not everyone can grasp just how much energy, will power and faith in ourselves it takes, for us to pull ourselves out of that bed and get going every morning, especially on a bad day.
The medication, rigidity and tremors. I can deal with. Going through the crazy times whilst increasing meds and feeling every emotion so intensely ( magnified x20), and experiencing a whole range of emotions rapidly (highs and lows) . The lack of control of these emotions and the cherry on top ... not remembering anything or just remembering snippets of events as though they were parts of a bad dream. It sounds funny, yes, and I can laugh about it now, but at the time it isn't. I can also survive this, PD.
Personally, I can't tolerate the dystonia. The cold makes living with this disease, sometimes, unbearable. The excruciating pain experienced during this episode is horrible, and I won't wish thay upon anyone. For those of you who don't know, Dystonia is the involuntary (twisting) Contractions of muscles, where our brain tells our muscles to tighten, Unfortunately, it forgets to send us the memo. It often works in pairs, usually, two muscles pulling in the opposite directions.
What does this feel like?
Imagine that you have to wring a wet towel by twisting it really tightly to remove as much water as one can. That is what our muscles go through, we just can”t unwring the muscle because our brain decides when it will release that grip.
It also has no set time limit. My shortest episode was a few minutes and longest a few hours. The longest few painful hours, of my life.
Yes, we YOPD patients have been blessed with this symptom also.
I have noticed, the progression over the past few months. The uninvited guest has crossed the midline. With Tremors on my right upper and lower limb also. Of course, my arch nemesis, Dystonia has to be part of that party also.
Dystonia may present in different ways also.
Muscle contractions may affect only one part of the body ( local dystonia), adjacent parts of the body (focal dystonia).
Or wait for this one, you may have the amazing opportunity to have your entire body affected by dystonia ( of course, how could it miss me). Yes,I have generalised dystonia.
It just runs up and down my body, and all that I can do... Is absolutely nothing.
Heat, tears, and music to help me stay calm. My favourites AUM chants 417 hz or Om so hum ( I am the universe) chants and sometimes Sunny doing her crazy, hilarious dance moves, Keep me just calm enough, waiting for my brain to decide to stop. And, then I have to sleep this off and at least a weeks rest because my body just ran a full marathon.
PD is a disease that is unique to each patient. We all don't experience, it in exactly the same way, and progression differs from patient to patient.
So, PD warriors, we are amazing, we are unique, we are sometimes mistaken for being under the influence of alcohol,( because we can't walk a straight line) or drugs (because we don't move fast enough). We also experience intolerance because we now process information at a slower rate..
My way, is to just say it, “I am so sorry, dear, I know that I am holding up the line because I can't get my wallet out of my bag fast enough, or I can not remember the pin To my card. I Have Parkinson’s disease; please bear with me a little longer. I am moving as fast as I can.
I take my power right back; I used to shy away from saying this; my anxiety used to get the better of me until I realised that,
I am strong, I am brave and I am enough.
Have a great day guys. Thank you for reading.
Sending all of you lots of love and light.