My New Life

(with Parkinson’s Disease)

duck prints in the sand“Could it something other than 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.

And…

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… 

 

Ann

I'm a practical mom inspired by nature & I enjoy sharing ideas that encourage kids' innate curiosity & creativity. Interested in subscribing? Check out the blue box at the top of my sidebar. I'm also a wannabe author/illustrator & product designer by day. Let's connect! doodlesandjots@hotmail.com. If you purchase through my Amazon links I get a small commission at no additional cost to you (thanks for supporting Doodles and Jots)! And remember to always credit your source here & elsewhere on the internet.

12 comments

  1. I imagine it’s a total roller coaster where sometimes you’re ok with it and oftentimes it’s overwhelming.

    Have you had a chance to look at that grief book I recommended a while back? Saying goodbye to what was normal for you and also to some of your hopes and dreams is definitely a grief experience, and I highly recommend the book or some other method of processing all you are going through in a constructive way.

    • I did! It helped my mom a lot with her open heart surgery too. Thanks for reminding me, I think I’d like to look at it again.

  2. I really like your idea of a book about PD for kids whose parents might have it or know someone with it. My father had PD and that would have helped me.

    I have been reading a lot about Freddie Roach, a celebrity boxing coach from Dedham (but now lives in Los Angeles) who was diagnosed with Parkinson’s in his early 20s. It could be that being hit in the head a lot (he has a big head and led with it) as well as a genetic element that caused his PD so early.

    What is so interesting is that his doctors have said that his PD did not progress very fast (I think he’s in his late 50s now) because he stayed so physically active. He trains fighters in the boxing ring and holds the pads that they punch.

    Even now, his speech is a little slurred and his hands are slower but he can still hold the mitts. He trains some of the top fighters in the world including Manny Pacquaio.

    I do think regular exercise and as physical as you can manage would be good both for calming the voices in your head, losing the weight and for slowing down PD. Perhaps walking with hand weights and moving up to jogging might be something to consider? I also recommend jump rope which is really hard but not expensive and only takes 10 minutes a day to do an intense workout.
    PragmaticMom recently posted..Seurat Art Project Using Chapter Book Liar and SpyMy Profile

    • I would like to read about him. They have linked PD to head trauma, chemical exposure, and genetics. I suppose I have had all three but so have a lot of other people who don’t get it. I would love to wake up from this nightmare but a more realistic dream would be to have a very slow progression like Freddie Roach. I could live with that! Some days are great but then I have a day like today and my walk is painful and my left leg just drags. My dad wants me to start running too. I’d like to try. Maybe I will try running part of my walk tomorrow! Good idea about a PD book for kids. I actually hasn’t thought of that specifically but maybe I could. I don’t know though I really haven’t figured out that part myself! My kids seem to be handling it no problem. It is me that is the problem!

  3. Ann, I am so glad you are writing about this. My dad was just diagnosed with Parkinson’s Disease (and I had wondered about that for a few years now). His dad had it, too, and there’s a pretty strong chance that I’ll get it eventually – and, if not me, at least some of my siblings. I would love to see you use your design skills to improve things in Parkinson land.
    maryanne @ mama smiles recently posted..Celebrating DadMy Profile

    • I hope you don’t get it! My grandmother had it but my mom never got it. Stay clear of pesticides and head injuries!

      It is funny I almost feel great, like there are so many possibilities :)

  4. That’s quite a challenge you’ve been handed, Ann… and *feeling* what I feel about you after knowing you for a very short while, I know you’ll live up to it and make a difference in this world with your creative determination. I too believe the book about PD for kids is an excellent idea as I think the parent with PD would also benefit from it — sometimes, relief comes in the most simple of ways, especially when there’s humour involved! I’ll be following your adventure for sure as I’ve subscribed to your posts. More power to you, sister! And lots of LOVE xox
    MUDD recently posted..garden update – a few herbs, more vegetables, and a NEW chest (sort of)My Profile

    • Thank you Mudd, so nice to have a new friend! I think a PD book is a good idea too. I am going to have to think about it for a while. Right now I have no idea what the angle would be.

    • Thanks Erica, I have seen a few that look independently published. I am going to think about it for a while. I don’t want it to scare kids or depress them but I also don’t want it to be unrealistic and ideally I’d like it to be relatable to more than just parents with young onset PD since it is (thankfully) not very common.

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