This summer has been a wild ride for me, but not in a good way. This has been a summer of the best neurologist I ever had with her astute observations of *everything* about me and my medical history, picking up on Parkinsonisms that others ignored.

She sent me for a specialized scan (that the hospital immediately charged me $4k for, despite being a preferred provider and supposedly “covered” by our insurance), and put me on a medication to treat Parkinson’s, to see how I reacted.

The scan and the medication both were “positive”, and I was scheduled to see a PD specialist within a couple weeks. That appt happened and, after giving a brief history of why I was there, she told me that my Parkinson’s diagnosis was confirmed by the positive scan and response to medication – it calms my symptoms down, but does not eliminate them. I still have bad days, but some things are under better control now. She added another medication to supplement the main dopamine supplement, to enhance absorption of the dopamine, and to stave off the eventual decline of dopamine supplemental efficacy that usually happens around 5-7 years of treatment. Those two medications together rather knock me out (my fatigue worsened, which I didn’t think was possible!), but the “down time” is not as bad as it was.

And, I’ve been referred to physical and speech therapy (LSVT) that is specific for Parkinson’s. I’m working on that one – I have a difficult time going to appts that are weekly and involve me traveling. The risk of fatigue taking over while I drive is quite real, so I have to plan these trips carefully. I’ve cut back on even my limited work schedule, and any additional extraneous tasks or participation that requires too much energy from me.

Since my speaking is affected, memory, and also swallowing (particularly scary!), I’m focused on the SLP first. My PD specialist also told me to pick an exercise that I can do for up to 30 minutes a few times per week. I asked if it had to be sustained cardio, and she said no – any exercise will do, but make it something you enjoy doing. For me that is tai chi and yoga, so that is what I’m doing. I really enjoy both, but I do modified versions, and yoga and tai chi are easy to modify.

So, this latest development may have put my disability case in odd circumstances since, as far as I’m concerned, PD is a very different animal than the other chronic illnesses I live with. For one thing, there is no preventing the neurological degeneration I’m facing – at least not at this time. Also, the people who tell me “oh, my friend is 75 and has lived with PD for 20 years, you’ll be fine” and “I’m 70 and I’ve lived with PD for15 years, you’ll be fine.”. First off, I’m in my early 50s, and the specialists have told me that my onset was actually a few years ago, at least – making my diagnosis “early onset PD” – *and I have at least two other chronic illnesses complicating my life, including at least one autoimmune illness.

For all those who have told me that “You’ll be fine, because I….”, I know just as many – if not more – people with PD or their relatives, who describe what their lives are like living with it, and it’s not a “you’ll be fine” situation. It’s a “how do we keep this disease from destroying our loved ones” situation.

For once, I actually trust my PD specialist – she was direct, to the point, and explained to me about the mechanisms of dopamine and PD. She didn’t waste my time with misguided lecturing about my diet or weight like every other specialist has done to me. She focused on my particular biochemistry and next steps, which I very much appreciated. Living with it is another matter, but I feel that I am good hands – rare for me.

Parkinson’s is still a different animal – and a scary one – for me. But for now, I feel like I have a fighting chance of managing it for a while. If anyone reading this has PD, or knows someone with PD, I’d appreciate your comments or thoughts on this topic below. Thank you for reading!

It’s been a wild two months, and this month isn’t over yet.

Thanks to my fantastic neurologist (a PA who listened closely to me and asked a lot of questions, then told me she would fight for me. No doctor ever said that to me before. Then she got me connected with a spine doctor (pain management, which every office I had previously called had turned me away!), and a neurosurgeon!

So I’ve been going to PT and was introduced to Pilates and alternate ways of strength training that are easier on my joints and spine. The epidurals — 6 of them today — had an impact within minutes, and told my doctor a few things about what nerves were triggered and which nerves still need attention. Round 2 is next month.

I’m also learning to avoid foods that trigger inflammation, and to find alternatives that are not so problematic.

Being chronically ill is very expensive, and Social Security is not the nicest place to deal with if you have an active disability case. You have to simultaneously convince SSA that you’re nearly dying and unabletofunction, AND also see extra doctors, get multiple scans, send reports ($$), hopefully have surgeries (or ongoing injections), and be at IMA evaluations which completely ignore your most debilitating symptoms.

I’ve been told by friends that it’s just as bad in the UK. I’m wondering if it’s this ridiculous in other countries also — countries that have some kind of social or occupational welfare system in place.

Are you on disability, or applying for it? How’s it going for you? What part of the world are you in? Drop a line in comments, I’d love to know how others have experienced this legal issue. (I do have a disability lawyer.)

It’s not uncommon for chronically ill people to prefer not to talk about their symptoms. To be fair, there are also as many who never stop talking about it, to anyone and everyone who will listen

But some of us just go silent.

Why?

1. Family (and friends, if we have any left) don’t understand, and/or the novelty wore off a long time ago.

2. Truly, most people are caught up in their own lives, and not looking to hear about our troubles. Especially if that’s the only thing we have going on in our lives.

3. Some people are true narcissists, and if it’s not about them, they don’t want to know. If it impacts them in any way, they believe it’s your fault for inconveniencing them. I have relatives and “friends” like this. I minimize contact and am careful in conversations with them.

4. Talking about what ails you can get tiresome – especially when you realize that talking about it doesn’t fix or change anything. In some ways, it can make you feel worse.

5. On the other hand, sharing your experiences and frustrations with someone whose disability is similar to yours, can be cathartic and help you to feel heard, validated, and understood. Experiencing this can be healing and stimulate feelings of connection and being cared for. I have a friend like this, and we support each other in this way.

6. I have found that, over years, it did me less good to tally an inventory of all that is malfunctioning with me, but helpful to do something that I do have control over. Whether it’s washing some dishes, vacuuming a rug, spending time with my animals, or sorting some papers — “doing stuff” gets me out of my head and moving. It helps to clear my mind and distract me from the pain I’m in, whether I can walk or not, and my general state in life. Plus, it gives me a feeling of accomplishment to get *something* — even very small — done for the day.

That’s often my goal on the really bad days — to complete one task, or at least get something started. Then I feel the day was not wasted.

Do you find that talking about your illness or disability helps you or keeps you stuck? If you have family, are they understanding? What are some ways you find of dealing with frustration about your health? Drop a note in the comments, please share you perspective.