Newbie seeking first consultation advice

[Sun_and_flowers]

Hi everyone, thanks for being.

In a few hours' time I'm having my first neurology consultation for a suspected, very highly probable PD diagnosis, and I wonder if anyone can give me any advice regarding questions to ask, what to expect, anything that will help me get the most out of my first visit.

I've already read and listened to quite a lot about the condition (videos and podcasts as well as medical papers and so on), and have already assumed it's what I have, but haven't spoken to anyone with the condition, and would really appreciate your input.

I'm going to sleep right now, my appointment is in the morning, so please excuse me if I don't reply for a few hours, I'll read any replies before I go in.

Thank you so much in advance for your help.

[Gymsack]

if it is Parkinsons, relax you can treat that. You have many years of quality life ahead. Dont get all upset and start the 5 levels of grief and self pity, that is just a waste of of valuable time.

Happyness is a state of mind, think about those people close to you and try to make them happy also. It is a long road and your journey which is just beginning will not be alone so be thankfull for what you have and make the best of it. There will be lots of time for questions.

good luck

You are not in this alone ,smile while you still can.

[Sun_and_flowers in reply to Gymsack]

Thanks for your reply and advice, I appreciate it.I had also hoped for advice such as, if someone reading this put themselves in my place looking back at their first appointment knowing what they know now, what would they have liked to know then so they could have left with more useful information for a first visit. The reason I'm asking is, from the first suspicion my general doctor had, until the appointment with the neurologist, it's been close to a year because of the very long waiting list.

So more input of that kind would be really appreciated, my appointment is in just over an hour, so still have time to read more replies, if someone would be so kind.

Thanks again in advance.

[Zella23 in reply to Sun_and_flowers]

I remember when my HWP first visit to the Neurologist, after suspecting it was PD, was dx. He told us it was progressive, which we knew and that was about all and prescribed him with Madopar and said go and try that and see if it helps. And to come back in about 6 weeks to see if it had made a difference!

I think if we had thought about it a little more, he probably didn’t need meds at that point and would probably have managed without meds for quite a while. His quality of life was still pretty good and he took them because he thought he should.

If your Neologists gives a dx like ours did and offered meds just take a little time to digest all the information offered and roads you can take, and a little thinking time helps.

All the best with your consultation.

[Sun_and_flowers in reply to Zella23]

Thanks for your reply, Zella53, much appreciated. There's so much information out there that it can be overwhelming, so good to know from people directly affected.

[Gymsack in reply to Sun_and_flowers]

things go slow,it takes time to evolve, everyone does not have the same symptoms to treat. At the end of your appointment you will make another for 6 months from now. you can make your own plans and changes ,exercise routines etc and many people here will suggest herbs and magic potions but as far as the doctors are concerned its wait and see with maybe a small amount of medication prescribed.

relax

[Sun_and_flowers in reply to Gymsack]

Thanks again, Gymsack.

[HekateMoon]

Hi Sun-and-flowers. Welcome to the site. Thinking back to my first appointment i would ask to be heard and have a person that respect its patients.

My first appointment was expensive, dismissive, created lots of doubt and fortunately brought me to this site to research and learn non stop from current research and other peoples best results in living with this disease. It took a few more appointments and three years to finally get diagnosed and get a decent neurologist that i trust and trust me to make informed choices. Always ask for why this medicine and not another is prescribed. Ask about food ( for some protein reduces effectiveness of meds so its better to take separately). The right dosage has to be found and it takes a bit...the illness in itself is progressive and chronic but then I believe some stopped the progression and some even reverse it. I read those stories in order to inspire me. Exercise is good. Exercise to music is better. I walk to drums. Its a personal choice...but its a movement disorder so keep moving. Rest well. Relax as much as possible. Stress is bad.

There are individual solutions for individual symptoms. For instance constipation.Once this one is treated you absorb your other meds and supplements better.

Not all your symptoms may be pd so is important to differentiate them. Please keep coming back. There are excellent people here. Excellent friends and excellent solutions. I wish you a good life. Pd is not a death sentence, nor a life sentence but a very deep healing journey. 🙏✨ Chelo

[Sun_and_flowers in reply to HekateMoon]

Wow, HekateMoon, thank you so much, that's also very helpful information. It's unbelievable it took three years to get a diagnosis, and I left wondering how long it was going to take to get a clear answer if this doctor is the only one I'm going to see, as he was very off-ish, very quick, hardly asked me any questions and told me I had to wait for a couple of appointments to have a scan done and something else I can't remember the name of, though thinking about it I think he mentioned some kind of contrast something or other, where they inject you with a liquid and look at things inside you.

Anyway, quite far from the doctor you describe, and just hope I'll get somebody else next time.

I'm falling asleep, had a very busy day and it's very late, so forgive me if I'm not expressing myself very well.

Thanks again.

[Hidden]

Here’s what I’d tell my former self before diagnosis:

You are exactly the same person coming out of the appointment as you were going in. Nothing bad is about to happen. Maybe you have a movement disorder & maybe someone has decided to give it a name. Don’t change your mental image of who you are.

No 2 people have the same experience of this. Accept that the process of finding the best treatment for you may take a bit of trial & error, that’s not necessarily the Dr being “bad”, that’s how it’s done. My meds work brilliantly (apart from ruining a lifelong relationship with draught Guinness).

I hope you’re not diagnosed, but if you are don’t let your thoughts compound the problem. Best wishes & good luck.

[Sun_and_flowers in reply to Hidden]

Thank you so much, Thegrandwazoo, that's also a very inspiring answer and I'm very grateful. I still have months to go before being diagnosed either way, but from everything I've read since my GP's suggestion many months ago, I've pretty much assumed that's what it is, so not really shocked anymore, and have been telling myself nicer things than I'm used to, and I'm grateful for being alive and for learning more about life now, appreciating things more, etc. 😊

[JohnPepper]

The first thing to remember is that THERE IS SOMETHING WE CAN DO TO REVERSE PARKINSON'S DISEASE. it is called fast walking, which produces a chemical in the brain that repairs the damaged braan cells. You don't need any medication, which has NO AFFECT ON THE PD SYMPTOMS! Look up the study done by the mauo clinic to confirm what I ahve said here.

I vave had PD for the past 30 years , I am now 88 and still living a good life, TOTALLY PD MEDICATION-FREE!

[Sun_and_flowers in reply to JohnPepper]

JohnPepper, that's amazing!! Wow, thank you so much for your answer, I love positive stuff, I want hope and positiveness, and will certainly try your approach. Thank you. 🙏

[JohnPepper in reply to Sun_and_flowers]

Keep us all informed of your progress!

[Dabaa in reply to JohnPepper]

Thanks for troubling to post. Can you share more or point to more. Thank you very much.

[Sun_and_flowers in reply to JohnPepper]

Will do. For now, I have to wait for them to phone me to give me an appointment for a scan and that contrast thing I mentioned yesterday, which could take months, but I'll come back as soon as I have any news either way. 🙂

[Gcf51]

As for me the biggest improvements have been from High Dose Thiamine (B1) and exercise. I recommend Dap1949’s book and her Facebook Group.

amazon.com/gp/product/B09TZ...

facebook.com/groups/parkins...

JohnPepper Mentions Fast Walking (No Question it Helps). I say any exercise is helpful...

[Sun_and_flowers in reply to Gcf51]

Thank you so much, Gcf51!, will certainly look into what you say and follow the links.

I'm very grateful to you all, you're all incredible people. 🙏❤️

[HekateMoon]

Sun_and_flowers. I use both, the Johon Peppers method. That is fast walking. You can read his book Also the high dose thiamine. Daphne' s book as recommended up is a good resource. There are 2 supplements that keep my tremor at bay. These are melatonin and Gaba. There are threads on both on this site. Not all solutions are fitted to all but keep coming back.

[CaseyInsights in reply to HekateMoon]

…2 supplements that keep my tremor at bay. These are melatonin and Gaba.

Do share melatonin and GABA dose, along with timing ✨🙏🏾✨

[HekateMoon in reply to CaseyInsights]

Hi. I take both an hr before sleep. 10pm. 20mg melatonin. 750mg. It took about 3 months to fully realise i shook less even when l/c wore off or dose failed. Meditation also is part of the team...🙏✨

[Sun_and_flowers in reply to HekateMoon]

Thanks again for the advice, Hekatemoon. 🙏