(with Parkinson’s Disease)
“If it quacks like a duck,” my doctor responded.
I had told him how the Sinemet was working. I said I feel about 60% better. I told him right away it made my muscles feel relaxed. I said my hands felt more coordinated and my left side felt stronger. He said he could see my face was more animated. He performed a few neurological test. He could feel the rigidity in my arms. He watch me walk and saw how I don’t swing my left arm. This by the way is the weirdest symptom. I notice it too and I make it swing and before I know it I am holding in at my side again. He renewed my prescription and said see you in September. I was sent home with my new baby, Parkinson’s Disease. But how do I take care of it, I wondered.
I still have dreams
I am between freelance product design projects right now and I don’t want to take on a new one. The last client meeting I had I was shaking like a leaf. Any little, totally normal stress, makes my body go crazy. Also even though I have medicine and I feel better there are still times, sometimes stress related, other times for no known reason, my symptoms are much worse. I don’t really feel like clients can count on me. I don’t want to take on stressful work, it makes things worse for me. Sometimes my hands don’t work so well. I don’t feel comfortable committing to deadlines.
Blogging is easier. I work for myself and on my own time frames. If I am having trouble with something I can come back to it later or do something else. Problem is I am not making a lot of money at it. I make some with sponsored posts, ads, and affiliate links but it is not a living. I want to try and make more money at it. I want to try and do more sponsored posts. They seem to be the most lucrative and I really enjoy doing them.
I still want to be a picture book author/illustrator. I think I could do it (on my own time frame). Since I started pursuing this goal more seriously in November I have missed making illustrated posted and just hitting publish. Also getting published traditionally could take a long time. So recently I had the idea of creating some self published pieces and offer them for sale. I had an idea for a book of printables similar to this one and maybe an alphabet book where I do a 50/50 with a literacy charity.
My other money making scheme is to create some PD related product ideas. It just occurred to me last night that I have a potentially valuable point of view as a product designer with Parkinson’s Disease. There could be all sort for products from ones that assist with daily life to ones that have therapeutic value. Like maybe something that could help or remind you to swing your arm when you walk.
Being my best self
I gained around twenty pounds since I suddenly started having symptoms. It has been a really traumatic journey involving lots of comfort food but since I am feeling better and have more balance, I have been walking three plus miles everyday and trying to eat less. It is also really important that I try and stay upbeat. It is so easy to let sadness and fear take over. I can cry at the drop of a hat. I will always choose to stay home where I can control my surroundings. I have to fight these forces. I have to! I found a great group (2000 plus members strong) of fellow Young Onset people on Facebook, a great group of positive people with advice and encouragement. You can say lots of bad things about social media but for something like this it is invaluable. I wouldn’t be able to find one person in my actual community my age with this illness that I could talk to.
If you have any advice for me I am very receptive to it, from ways to make money blogging to ways to cope with chronic illness. Please share and thanks!
Favorite PD links…