Alright, we’ve made it another day. Today the outlook on life is still concern but more worry then fear. I’m feeling a bit better but now instead of fearing the unknown I’m trying to understand how to beat it. Now that is the true challenge. My goal over the next few days is to take the worry that was fear and turn it into just pure understanding and drive to push harder. How I’m going to change worry to drive is beyond me but somehow last night something clicked so I hope it just happens again. So last night, I went to bed, was listening to music, thinking about what a few friends had said during the day. When I was suddenly have back to back horrible anxiety attacks. There was a brief bit of relief between them. Hell I’m starting to have one now just thinking about them, horrible… but then something clicked. I didn’t change anything my brain just switched off the fear and it turned to worry and the want to better understand so I can find my path. That path includes a lot of things but as I keep repeating that income to keep me moving forward. There’s still a lot to accomplish in a very short time.
Let’s give a summery of yesterday. It was good. I woke up in pain like every morning. Did my stretches PT gave me and felt better. Had coffee wrote to you folks, then I played some video games woke up the hands. Started to work on some design work I REALLY need to get done… but then it was time for my doctor (GP) call.
So I called in with the info they had requested for the tele-visit. I recalled my doctor saying she was going to be out. A man answered, I think he even said he was a PA, but don’t recall for sure. His tone just immediately rubbed me the wrong way. I got defensive and closed down a bit. By the middle of the call I realized what I was doing so I told myself to quit and I did. I worked with him best I could. I requested to see an a neurologist that specializes is #parkinsonsdisease along with my standard neurologist. This was suggested by the Parkinson’s Foundation when I was speaking with them on the most recent call. He said he would forward me to some place which didn’t seem like what I wanted. So I’m going to call the Parkinson’s foundation back and get doctors names in Portland because I know there’s at least a couple good Parkinson’s specialists there. Then we went over everything else, I requested he discuss this with my actual GP because she knows me and my disease. He agreed but then went on for what seemed like an hour talking about my disease to me… yeah buddy it’s new but not that new thanks. It was the general well this is how things are gonna go talk which is bullshit because they never went that way for me but that’s another story for another time. He also went on to brag about his experience and length of time in the medical field which impressed me even less. Don’t talk about what you’ve done, show me what you can do… anyway then that travesty was over.
This is getting long so I’ll try to make the rest a bit more quick. Which won’t happen because it’s impossible for me 😆
I then got to see my in home nurse Hillary and Mike my medical social worker. I’ve come to love Hilary as a person, she’s amazing at her job and just make me happy. I need that. Mike is a very caring individual who seems to know his job well. The best part was they both got to visit together and we got to SIT OUTSIDE!!! Dart (my dog) joined us… I don’t talk about Dart enough so I’ll start. No smoke and it was nice. We hashed out a few things… I think the group meeting actually helped more. I won’t go over all the possibilities we came up with but rather talk about things as they happen. So that was a really good visit. My tremors were actually kinda bad but I was fairly clear headed so all went well. When the visit was over I was sad to see them leave. Which let me know I’m definitely lonely in need of more human interaction.
Random conversations throughout the entire day of course…
Then a quick meds and lunch break before OT. YES finally OT, I kept thinking it was days before for some reason. So my in home occupational therapist came by, her name is Nancy. She is very lovely and a pleasure to talk with. She did my initial and found some ways we can improve. I was slightly applauded as to all the steps I’ve already taken to keep myself safer while in the travel trailer which can be a death trap. It has limited space which means my falls cause more problems but I’ve learned to mostly work around that. Anyway back to Nancy. She finished her visit, noted her suggestions, we scheduled our next visit and she was off. It was a good visit and I really look forward to working with her.
Next I sat down to finish that design work I’ve been trying to get done between each visit making zero progress… and the day kinda came to a grinding halt. I think with all the mental action and the little bit of physical action it really wore me out. So I took a short nap. Woke back up about 5pm and was going to just go back to bed because I was really tired. So I messaged my friend who cooks my dinner most of the time and asked what was for dinner. He said BBQ sandwiches and some sides. For once I was ACTUALLY HUNGRY!!! I now again can remember what it feels like to be hungry and eat what sounded good! So I kept myself awake by annoying people on the internet. Took my meds, ate dinner and then went up to bed a bit early, and that’s full circle to where I started above so that worked out well 😁
So today… I have PT at 2pm. This will be interesting because that’s about body/mind crash time at the latest. This morning I’m drinking my coffee, having a banana, still dreaming of biscuits with hamburger gravy. I’m going to play some video games now to warm up the hands. Hope my buddy UB is on because he’s a joy to play with. Very motivational! Video games just seems to work well for my hands and funny enough reduces the pain. I assume by movement and stretching, but in a fun way. That along with the different stretches I’ve been doing from PT have really been helping to increase my movement range / ability and it does reduce pain by a bit. Next I’ve got a video chat planned with a friend from the UK. He’s been a life saver. Just talking with him about life and everything really helps so much. It’s not just the talking it’s the person. He is an absolutely wonderful soul and I appreciate him more than he’ll ever know. After that I’m going to finish that dang design work and get it sent off. It’s not a paid gig but it’s one hell of an honor. I’ll share more as I can, but for now it has to stay private. After that will be meds and lunch, by then a short rest and PT… from there we shall see. I’m going to really try and dedicate some thinking time to possible short term / long term income possibilities. If I think about it as much as possible I have to come up with something right? Fact is I have the ability I just don’t have the capital to get it started. So either I need an income to build capital or capital to build an income. Guess I just gotta try hard to have a productive day! (thank you my friend for the donation last night, text this morning, if you’re reading this you know who you are)
AND AND yes folks you can donate to me directly via Venmo, PayPal or other methods if you don’t want to donate to my Facebook fundraiser. I also would love mailed donations, there are many things I need, if you want to help that way please just private message me. I will happily give my address and or phone number to anyone privately but because my posts are 100% public I don’t want to post it here of course. I’m also going to setup and share an Amazon list of general life things I use so people can donate that way too. I’ll do that today!
As always, be safe, the world is nuts, I know you all have challenges too and I wish to the best of luck in finding your solution if possible! Anybody who needs design work, if you truly can’t afford it, I will do it for free. Lastly but not least. YOU ARE APPIRICIATED AND MUCH LOVE 🧡
#parkinsonsdisease