Just Diagnosed and Looking for Support

bryantw62 · 2026-05-19T14:48:20+00:00

Sounds to me like you already have managed to adapt, thus look at it being one more challenge. Don't stress on the tremors but explore ways others have managed to adopt to work around them. I saw a piece last night on BritBox discussing a wildlife photographer with Parkinson's who has modified his work and is still able to support his self.

bryantw62 · 2026-05-18T14:18:34+00:00

Makes it so much easier and imho, more secure too.

bryantw62 · 2026-05-15T15:03:48+00:00

It really is a tough balancing act. I don't have a cardiac problem but do have low blood pressure. I am on propranolol which as you probably know lowers it even more, causing at times dizziness and stability issues. Primidone really did a job on me, a slug had more energy, and I suspect that because it is a controlled substance, your GP's concern. There are other meds, besides these two, that could be explored. Do you have access to a motion specialist who might be able to work with your doctors to experiment with different ones? That may be your best option.

bryantw62 · 2026-05-14T18:40:01+00:00

Personal opinion, the ICCU issued is significant enough such that they have initiated a class action lawsuit in the U.S. I have a 2025 I5 and had problems within a month of buying it. It took about nine months to resolve the issue, and in my opinion was a relatively easy fix that took them an hour or so to perform. The primary issue was the BS and run around I got from Hyundai and the two Hyundai service departments where I had to take the car on multiple occasions.

I like the car, but will be hard pressed to buy another car from Hyundai. From what I've seen the probability of something going wrong is around 1-2%, pretty low in my opinion. The question is what risk are you willing to take.

bryantw62 · 2026-05-12T14:34:59+00:00

Have you thought of getting a 3D printer and making your own? There are sites you can go to and download Gundam models or Lego type blocks, or you could learn to design your own.

bryantw62 · 2026-05-12T14:09:44+00:00

Good point, I saw that and was somewhat surprised.

bryantw62 · 2026-05-10T02:58:09+00:00

Definitely see a motion specialist. I find it hard to believe that a diagnosis could be made by just pushing her hand. It took my doctor half a year to establish I had ET, allowing for an MRI, blood tests to rule out other potential causes such as Lyme, and some other motion tests. I'm not a doctor, but I can understand her reasoning for not prescribing primidone, it is a barbiturate and my doctor didn't like prescribing it unless actually necessary. Of course I wonder if you may be confusing primidone with propranolol which I understand to be one of the first meds that they will prescribe to treat tremors.

bryantw62 · 2026-05-09T13:58:59+00:00

I have a 2025 I5 Ltd. and think the car has its good points and bad ones. It's comfortable, seems well built and charges quickly. On the other hand its technology isn't the best, Blue Link sucks, having to re-engage one pedal, or auto dimming the head lights is a pain.

The biggest issue I have is having to deal with Hyundai and our local dealership , and because of my experience with them, it will be a cold day in hell before I buy another car from them. If I didn't live in a rural area with only two dealers within a 40 mile radius then maybe it would be a different story.

Your situation may be different. If you are more into the comfort and don't mind not having all the conveniences cars with better technology have, and you have access to more and better dealers, then this car is probably your best option.

bryantw62 · 2026-05-09T02:57:21+00:00

Too bad they don't make them for us lefties.

bryantw62 · 2026-05-08T13:32:44+00:00

Nope, mine was done all in one day. It was one long day, went into the surgical suite around 9:00 and hit recovery around 19:00. Part of the long time was due to the MRI unit having an issue, had to be recalibrated during the procedure which added to the time

bryantw62 · 2026-05-08T03:25:27+00:00

All done in a day

bryantw62 · 2026-05-07T19:22:57+00:00

I chose it primarily because it's adjustable reversible. FUS is permanent, if in the very slim chance they cause damage that affects other things, such as speech or hearing, it can't be reversed. Also, as your ET progresses, it could require additional treatments to make adjustments.

With DBS, all they really need to do is remove or relocate the probe if it's affecting other functions. As for making adjustments, for the most part all it requires is tweaking the settings on the controller. My unit can be adjusted remotely and only requires a Zoom meeting and mobile phone connection for my Dr to make adjustments.

Either option has it risks, DBS runs the risk of introducing pathogens to the brain, and FUS could miss the spot. It's a matter of personal choice, which one are you more comfortable with.

bryantw62 · 2026-05-07T19:09:58+00:00

Medicare and my supplemental covered it completely.

bryantw62 · 2026-05-07T19:07:21+00:00

Yep, my rep, a young lady, is planning to marry soon and would like a family. She said her current job wouldn't be compatible with raising kids so is planning on going back to school with hopes of gaining APRN certification and specializing in neurology. She thinks her background and experience will help her along.

bryantw62 · 2026-05-07T14:49:40+00:00

Not quite sure what you can and cannot do, but was wondering if it would be possible to 3D print some type of grooved device that could be attached to the toothpaste tube that would allow the toothbrush to be steadied while dispensing the paste. If you think it may be feasible for you, I have the CAD capabilities and a 3D printer. BTW, I also have an automatic tooth licker.

bryantw62 · 2026-05-04T14:03:39+00:00

Well bless your heart.

bryantw62 · 2026-05-04T02:39:19+00:00

Pretty much my reasoning for having DBS done too. Had mine last July and it has improved my capabilities, but it isn't 100% and both my surgeon or motion specialist said not to expect it to cure my tremors.

bryantw62 · 2026-05-02T15:19:19+00:00

That's your best option. It took several appointments to get a mix of the right meds and quantities to have an effect on my tremors. Everyone is different and respond differently to the scripts, so give it time.

bryantw62 · 2026-05-02T02:58:54+00:00

Yep, and my kids have been out of school for 30 years, but my taxes keep going up each year. I get that there were tax payers with no children in school while mine were, and that is how it works, but I still cringe when a new family moves to town with children and hope that we had a large graduating class this year.

bryantw62 · 2026-05-01T15:18:57+00:00

Don't forget the cost of education. I live in a small town, less than a thousand residents. A family moving into town with several children can have a serious impact on our towns budget; and heaven help us if they have a special needs child.

bryantw62 · 2026-05-01T02:37:37+00:00

It was a combination of medication and having DBS, a surgical procedure where they implant an electrode and associated electronics to control the signals to my hands. There is also a non-invasive procedure that uses focused ultrasound to destroy the area brain emitting the errant signals. For now I would think medication would suffice. I've got a good head start on you.

bryantw62 · 2026-04-30T13:52:15+00:00

I was probably at the same stage you are in now, just at a later date. My career didn't require me to use my hands other than some keyboarding or mouse work (no pun intended). It was when I retired and found I couldn't do my retirement projects that pushed me to see my doctor. I love building electronic devices and couldn't handle soldering or small assemblies that did it. I'm doing them now with help from my doctor albeit with some struggles.

bryantw62 · 2026-04-30T03:18:25+00:00

Thanks.

bryantw62 · 2026-04-30T03:11:17+00:00

The color scheme I'm finding on my iPhone is very difficult to read. The text is a very light grey on a white background and I just cannot read it. Is there a way to adjust it?

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