Good day beautiful people (my fellow amazing warrior, friends and awesome supporters)
I just realised that I had written this post before my surgery. I guess that today is the day that this post is meant to be published. Especially since I Had a bad episode yesterday, and thereafter watched my girls reactions. That, confirmed my decision.
The progression of my PD has been making me feel quite down lately. As symptoms worsen, I have to face this head-on and make peace with it. Which I am trying to do, as best as I can. I will continue to remain positives possibly can. I aim will to work through this, and fight this disease.
Progression of the YOPD (for me) means a loss of independence, becoming reliant is scary and that’s my daily struggle. I appreciate everything that my family does for me, but it’s the loss of the ability to perform the little tasks we take for granted that hurts. Losing control of my motor and some non-motor skills affects me both physically and emotionally. I am beginning, to look at my life through a new set of lenses.
I have begun to ask myself some difficult questions, but whatever lies ahead on this journey, I am confident that I will be able to positively face the challenges because I have all of you cheering me on.
As my uninvited guest continues to invade my life, some symptoms tend to make living with the disease more difficult. It makes me realise how fragile life is. One of my previous posts was about my dystonia, which shows itself with great force and weakens me. The next symptom is dysphagia.
Dysphagia is difficulty swallowing and may range from a partial to total blockage of the oesophagus. It is caused due to a health condition, in my case, it's the PD. Loss of the dopamine neurons can impair swallowing.
It began as a feeling that food was sticking to my throat/ oesophagus. However, over time it started to feel like the food plugs my throat. At first, I would continue swallowing my saliva or hitting on my chest or back would dislodge the food, and all will be well. However, over time this happened more often, right now it is a daily occurrence.
Unfortunately, there isn’t always a sign that it is going to happen, and may occur at any time during a meal. I chew and then swallow and the food lodges and forms a plugin in my throat, usually somewhere along the upper third of my throat. I try to swallow my saliva, that no longer works. Drink some water, small sips to help push the food down, the water begins to fill from the plug up, I can hear the water gurgling, I hit at my chest with my fist because I now have difficulty breathing, and begin coughing. Whoever is around has to also try to help to dislodge this plug. This forces me to a point where I have to induce vomiting also, often followed by choking, and a bit of food aspirating into my lungs.
The episode leaves me, with a burning feeling chest, struggling to breathe, coughing and fatigue. I am sorry, for being so descriptive, but I had to explain this.
Others aren’t always able to understand that this is scary, and my children have to often watch or help me through this. As a mother,
I find this extremely heartsore, especially watching my 10-year-old Sunny take over and try her best to help.
Of course, also having to watch both Tas and Sunny, go through the emotions, after each episode is devastating. Each new symptom increases the burden that they carry in their lives every day.
My children are constantly, trying to balance all this in their lives, which is unfair to them.
So when I read the quote “be kind to everyone because you know not what the next person is going through, ” I can truly relate to it.
With the dysphagia I had to make many lifestyle changes, the type of food eaten (vegetarian), I have to eat slowly and sit at a table. I don’t eat if no one is home and no talking during meals.
This lowers the risk, but it doesn’t eliminate the problem. It doesn’t only happen with food, sometimes it's water or even saliva.
Some tips that you may find helpful:
*You will have to see a doctor, tests will be done, and take it from there.
* the people around you need to know how to deal with the situation.
*everyone needs to stay calm
*try to explain as best you can, and find the necessary professionals to assist your family to deal with this disease and its symptoms.
Some of you may think of this as over share, others may be able to relate. And some may not understand just how this feels. It all good... It's all okay.
This is me owning, how I feel and setting it free.
Thank you for reading and walking with me.
I do appreciate you.
So please , go out today, and be amazing, be kind and be true to yourself. And, bring some sunshine into someone's life today.
Have a blessed day filled with love and light.