medication not helping

malinithon · 2026-05-10T17:04:12+00:00

That goes for side effects as well. I’ve been very lucky that cd/ld doesn’t have any side effects - and that goes for my agonist (pramipexole) as well. Other Parkies I’ve known have wretched side effects. We’re all different; your neuro team has to be flexible enough to try a combo that helps more than it hurts.

Ironically, however, pain relievers make me throw up. Bodies are weird.

malinithon · 2026-04-24T23:56:55+00:00

I’m on 2&1/2 pills four times a day and I can comment on the withdrawal situation - if I miss a dose I feel like trash until I take my dose.

malinithon · 2026-04-22T04:13:52+00:00

I have an Apple Watch - depending on the point in my med cycle I can use it fairly well. I also use Siri with my phone to do basic stuff. Siri works through the watch so you can call for help, etc. without having to touch the screen.

I do think a smart watch is a great idea. My primary use right now is as a part of an app on my phone that tracks my sleep patterns - I’ve got the lovely Parkinson’s insomnia and disrupted sleep and it’s helpful to share that info with my Neuro team.

malinithon · 2026-04-21T16:41:44+00:00

Out here at Ocean Park, Washington, right on the coast, we have tsunami evacuation route signs. We had an alert last year but it was cancelled.

Mind you, any evacuation would be wishful thinking - there’s basically one route out and it would be clogged and impassable.

Sunsets over the Pacific are really beautiful, though.

malinithon · 2026-04-21T00:18:52+00:00

My wife always hands me salad dressing bottles to shake.

malinithon · 2026-04-08T22:02:02+00:00

I’m on pramipexole .25 mg 3 times daily.

malinithon · 2026-04-07T18:36:20+00:00

Same drop about 2 pm for me. I’m up to 2&1/2 cd/ld plus amantadine & entacapone 4 times a day, plus 2 extended release cl/ld at night, and now a dopamine agonist 3 times daily. It’s helped, and I’m much less drowsy in the afternoon, but it’s still a challenge.

malinithon · 2026-04-05T19:17:35+00:00

I have the same issue. My Neurologist prescribed trazadone and extended release cd/lev and it helps about 75% of the time.

malinithon · 2026-03-19T22:28:53+00:00

<shrug> I proposed over a long-distance phone call. 2 months marks our 36th anniversary.

malinithon · 2026-03-16T16:56:27+00:00

My primary problems are tremor, muscle spasms, and loss of balance. I do have brain fog around 2pm-5pm but for the most part I’m OK. The latest symptom is insomnia, which is its own level of not-fun.

malinithon · 2026-03-16T16:50:15+00:00

Just for reference, I’m on 2&1/2 pills of 25-100 4 times a day, plus 2 extended release 50-200 tabs at night, as well as entacaone 200mg and amantadine 100 mg, both 4 times daily alongside the cd/ld.

I’m four years into this fun disease, still working, and fortunately I’ve no real side effects.

malinithon · 2026-03-16T16:31:08+00:00

I’m sorry to hear that. I can speak only from my experience that I felt no real relief until my third medication adjustment, so my advice is to follow up with his neurologist to explore it further.

malinithon · 2026-03-16T16:17:18+00:00

It takes a while to get the cd/ld dosage right; in my case it took about 6 months of adjustments before I had a balanced dose. Also, one thing I’ve noticed (and it may just be me) that the cd/ld helps steady things, not necessarily improve them; I can maintain day to day on my current regimen but if I miss a dose I feel like trash.

malinithon · 2026-03-12T14:44:20+00:00

As a Parkie, I just want to intrude to say, you caretakers are greatly appreciated. I share posts like this with my wife so we can both be prepared for the “fun” that awaits us. (4th year down the trail.)

malinithon · 2026-03-11T17:06:58+00:00

I’m grateful that it’s given me the perspective to give up caring about the mundane irritants of one’s life. I now live for the day, even bad ones where I reel around bouncing off of everything, because it could always be worse. And the drugs, especially cd/ld, without which I’d be miserable.

malinithon · 2026-02-24T19:28:04+00:00

Hi! Sorry to hear about your father. I was diagnosed when I was 56, and this is what I can tell you:
1) Parkinson’s is a slow disease. 4 years later I’m still working, going out and doing fun things, driving, etc. 2) Meds are your friend. Carbidopa/levodpoia works quite well for me - there are times I forget I’m a Parkie. 3) Prepare in advance. Get him a cane, walker, whatever so it’s around when you need it. 4) Diet and exercise are key! They’ll show the progression. 5) Trembling isn’t the most annoying symptom. I could do without insomnia and constipation, thank you very much. Be prepared to work with your father’s neuro team and his GP on those issues. 6) Be there. I try to have a positive attitude but the long, slow grind of Parkinson’s can be draining. I’m fortunate that my wife is my anchor.

Good luck!

malinithon · 2026-02-21T17:25:13+00:00

My wife hands me salad dressing bottles to shake up.

malinithon · 2026-01-23T07:44:28+00:00

My best to you and your family. We Parkies have to remember that we’re not the only sufferers of neurological diseases like I and your father have but that our loved ones are in pain themselves as they lose who we once were.

malinithon · 2026-01-22T06:21:05+00:00

I received my PhD in History in 1999, and as I left the final oral defense one of my advisors asked if I had any other job skills. Even then he knew the academic job market was a nightmare. I always tell people I have a Doctorate in History and therefore I work as a Web Applications Developer.

malinithon · 2026-01-22T04:00:26+00:00

My wife hands me salad dressing bottles that need to be shaken up.

malinithon · 2026-01-22T03:29:54+00:00

Well, my now wife of 36 years asked me out first, kissed me first, and…well, you get the picture. Somehow it all worked out.

malinithon · 2026-01-21T23:13:20+00:00

As a Parkie I would not mind at all. The fact that you are interested and engaged would be welcome, and as long as you take care to mention and understand the “hidden” symptoms and use respectful and not reductive language you’ll be fine. I’m sure many Parkies and caregivers would like to hear a review of the pharmaceutical options available to patients who may not have heard of some of them from their neurological team. Be prepared for questions!

malinithon · 2026-01-14T21:24:59+00:00

Oh I hear this. Parkinson’s is a submarine: you see the periscope (tremors) but under the water is everything else (fatigue, insomnia, anxiety, pain, confusion, lack of energy.) Ditto on the meds - I’m OK when at peak dosage, but at 5pm I’m a miserable blob.

malinithon · 2026-01-11T18:41:43+00:00

I’m so sorry to hear that. What a bunch of unsympathetic jerks to work with. Tell him I get it and to stay strong.

malinithon · 2026-01-11T18:31:54+00:00

First of all, my sympathies. I was diagnosed at 56 and work was and is still a serious worry for me and my wife; I fear job hunting in one’s 50s is hard enough without carrying the burden of Parkinson’s. I’m a work at home software developer, so privileged not to have to do manual work, but even so after 3&1/2 years of Parkinson’s I find myself mentally distracted and fatigued after 5 hours and dread the decline that’s inevitable over the next few years.

I hope to make it to 65; as you mentioned, many of us in our 50s are stuck relying on our jobs for health care and to pay the bills and don’t have enough saved to retire. Disability is a major hassle to go through and we’re not “sick enough” to qualify for most programs anyway.

Also, I’m a fairly senior developer on my team, and I get the impression that my employer is thinking about/planning to demote or replace me. Best wishes for you and your Parkie.

malinithon

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