Updated: Dec 8, 2021
Just a little update on my PD, I have had an appointment with a Speech Therapist for my Dysphagia. She did suggest some exercises that I now do daily. This helps to strengthen my mouth and neck / throat muscles. She also taught me ways to prevent choking.
It hasn't helped prevent the choking and aspiration. However, she walked me through techniques that I can use during an episode.
I have also finally rescheduled my appointment with the Movement Disorder specialist. Will keep you updated regarding the outcome.
Since the increase in medication, pain is very mild. So I do keep myself busy. However, the medication does make me quite tired and tired. Can't do as much as used to. Now that I've filled you in on my progress, you may read my blogpost.
Finding my Purpose
I am often asked these questions: How do you stay strong? You're still making time to help other? You make this look easy? (after learning about my disease) Finding myself and a purpose has made a massive difference in my life. Yes, it's not a perfect solution because one doesn't exist. Yes, I do stumble and fall and have horrible days. Yes, I do, have lows and have reached rock bottom more than once. I have just chosen to live and view my new normal through positive lenses. This is so much easier said than done. Of course there are days when it feels like an impossible task. It's on these days that I have to be kindest to myself, and I remind myself that I am a warrior and will not let PD win.
Receiving a diagnosis is overwhelming and comes with many emotions.
Starting medication and the side effects experienced is scary. Also, accepting the diagnosis and having one's family make peace with your uninvited guest is difficult and painful to watch.
Having awesome family & friends that are there for you always is so important. To listen, cheer you up and make you feel less lonely. To make you see that there is some light at the end of the current dark tunnel. It has been eight years since my first symptoms began, I have found many friends, lost some, have learned many lessons, and I am grateful for all of it. Without them, I wouldn't have grown as a person, learned to love myself or been strong enough to pick myself up every time this disease has knocked me down. It takes some time, but I do get back up.
What keeps me motivated?
I am passionate about helping others, not only other PD warriors. who need to feel less alone, require a little motivation, or some support and a listening ear, without judgement.
Besides the blog, I also mosaic mirrors ( I love it because it helps exercise my brain, has made me stronger physically and gives me a tangible accomplishment. The above works wonders for my dopamine levels. Seeing the excited face of the person receiving it is priceless and worth the time I invest in it. I will attach some pictures at the end.
Before Tas left for Johannesburg, she taught me how to crochet. Crotcheting was a skill that I couldn't learn when I was younger. My grandmother possessed this excellent talent. She used to crochet the most beautiful lace. I always did admire her.
So I decided to crochet a throw/ blanket, and I am currently making many, many granny squares. I am plodding along, and it's going to take forever to finish. However, for me, ending each square is such an achievement. It makes me feel like a child again.
I chose these because I like arts and crafts. You may choose something that you love to do. If it works great, if it doesn't, don't give up. Try something new.
I am proof that there is hope after the diagnosis. The decision is yours to make. You decide how you live your life. Yes the illness comes with complications and there are horrible painful days and many “I just can't get out of bed days”. This is when you have to be kind to yourself. You will be judged, because some don't understand that getting through a day, is often dependent on our meds ( ON and OFF times control our lives). Adjust your day accordingly. Make time to find yourself and your new normal. Take your time to heal but always pick yourself up and move forward.
I have found that finding a purpose, helps me maintain my centre. It makes me happy, and keeps me focused on moving forward. It helps me maintain my independence. It allows me time to think, and on the not so great days, it calms me. Remember, when the dust finally settles, all that’s left is you and the uninvited guest. You will have to make decisions that affect your entire life. You either GIVE UP or STAND and FIGHT. The choice is yours... Keep Fighting 💟 A