Medication

[Limpy932]

Diagnosed with Parkinson's in March. Follow up visit with neurologist in two weeks. So far just slight tremors in hand. Is there an advantage to staying off medication as long as possible?

[Hidden]

That is a subject, heavily pro and con. I’m on the no benefit opinion.

Vitamin B1 use instructions ;

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Parkinson’s thiamine hcl

m.facebook.com/groups/23226...

[Hidden]

Diagnosed 2012

My regimen:

The positives after B1: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more (less) constipation. Parkinson's progression stopped. Suppressed most motor and non-motor symptoms...

My 8th year post diagnosis and have not fallen, not once, to the surprise of my neuro.

[gginto in reply to Hidden]

Sounds great- How much B1 you take daily? I take 200mg. Still got shaky left hand. Thanks

[Hidden in reply to gginto]

C/L not thiamine hcl have any affect on tremor. More than two years ago I started 4 grams daily

[pvw2]

Not really according to my neurologist. However, he started me off with Rasagiline and Pramipexole, and is waiting on levodopa and carbidopa (L/C) until it is necessary. It's the progress of PD that makes meds ineffective. Exercise is one of the best things to slow PD down .

[parkie13]

Pramipexole is an Agonist. If the doctor did not explain the side effects they can be looked easily online. Some people do fine on it other people have problems.

[Astra7]

The $6m question!

There does not really seem to be a sound reason not to start other than a general fear of taking meds for too long. Indeed one Neuro I saw told me that lack of dopamine caused the synapses to pack up such that even if there was enough dopamine it wouldn’t work and then you really are left struggling.

I decided to take azilect straight away and a few months later added madapor that I have had to increase over the past 4 years. I have kept my PD a secret from work and my kids (a poor decision in retrospect) as well as my tennis club etc. Consequently I don’t want to show any symptoms.

I also tried a billion supplements but got sick of all the fuss, so am down to NAC, mannitol, magnesium and PEA. B 1 just makes me anxious but some have had great success with it.

I would take as much as you need to enjoy life while you can😎.

[GymBag]

Take the meds, use the advantage of increased abilities that they give you to exercise much more. Exercise like it was life or death and then add some more. Don't reduce the exercise just work harder. Fast walking, bicycle, boxing, there are many forms. When you see your neurologist next he will review meds , take what he recommends, now get out and exercise while you can , you will feel better tomorrow. Good luck you can do this .

If you dont hurt a bit, if your not soaking in sweat, if you dont feel exhausted then your not doing enough.

[GymBag]

Several studies done on this over long periods of time. I will try to find them . Conclusions were pretty much what I said.

[rch21]

I fully agree with Gym Bag, with the caveat that if you have not been exercising,, get into it gradually. Also, many people find that organized groups work better for them. Rock Steady Boxing a and Dance for PD are examples of programs designed for this purpose.

[pandaeyes1]

In the past, there was the thought that waiting until symptoms get really bad to start meds was a better choice since with chronic use, it is inevitable that side effects like dyskinesias will happen. However, the recent literature has shown that there really isn’t much value. Being on medications when you become symptomatic can actually be very helpful as you can continue to engage in daily activities and maintain cognitive, mental, and physical health.

[bepo]

If you wait on the meds, you can take B1. B1 might just stop the progression. From my understanding, it will. Then, you don't need any meds, all of which come with side effects.

[MarionP]

No. No advantage to staying off medication. Rather, the weight of evidence, if anything, is on the other side.

[park_bear]

In agreement with those who say there is no need to delay medication. On the other hand, if your only symptom is a slight tremor there is no urgency to start medication, either. You are lucky to be diagnosed so early – I would make use of this time by getting on board with high-dose thiamine/B1 as referred to above.

[NRyan]

I have had a slight tremor in my hand for the last 4 years ( I was able to figure out pretty quickly I had PD after two dystonic storms coupled with the tremor, confirmed by Dr. Mischley). I have used this time to research and put into practice what I have learned, rather than go the medication route. I exercise, use B1, B12, NAC (plus more), intermittent fast, eat a dairy-free diet with minimal processed foods, low sugar intake, don't consume alcohol, use cannabis medicinally (very, very minimally), changed all my products to natural ones, meditate, etc. I use Dr. Laurie Mischley as a consultant once per year also. I am leery of meds and the dyskinesia they produce, but these other things have really had a positive impact on my PD. I will use meds when the time comes, but for now I feel supporting my body and its natural production of dopamine works for me. I feel it was a gift to find out so early and I want to use that gift to alter the outcome as much as possible. There are SO many things out there you can do to support your body. I have learned about them from the wonderful people in this group and others. My dad (a physician) had PD for 23 years and did NOTHING but meds for it. I saw what that did and although he had a fairly good life for 20 of those years, I want to learn from his mistakes. It's my dad's greatest gift to me.

[Despe in reply to NRyan]

My husband is also Dr. Mischley's patient, but she wanted my husband to start on Sinemet which she prescribed, 3 tablets a day for 2 weeks, then 2 tablets X 3 a day. Because of side effects, my husband elected to start MP. Later our MDS who has no problem with natural levodopa prescribed Lodosyn to take with MP. He is now on 1 1/2 t Sinemet a day (1/2 x 3) with 2 NOW MP capsules. As our MDS told us, "Less is more!"