Frightened

[Rebtar]

After very slow progression over the past three years, things have accelerated over past few months. My symptoms had been limited to left side tremor and a bit of slowness. I had had some fatigue which improved with exercise. Since february, the tremor has increased and I feel weakness on both sides, and I find it hard to get through my 1 1/2 hour daily exercise (alternating hiking with gym). Last night a sudden tremor woke me up, first time that's happened.

I've been taking thiamine hcl since february, and in consult with dr. C. reduced dose from 4 to 2 grams per day when symptoms started to worsen. That was about a month ago. I also take a lot of supplements including Sivestrov's ldopa protocol and mannitol.

What most concerns me is the fatigue. Exercise has been so helpful, especially with depression which I had for many years pre PD. I really don't want to reduce exercise but the fatigue is making it really hard.

Any suggestions, my friends? I'm frightened and unsure of what to do.

[park_bear]

So sorry to hear of this, rebtar. Do you have any possible exposure to environmental toxins such as the insecticide permethrin? Pesticide workers exposed to it have treble the risk of Parkinson's, and permethrin impregnated clothing, and permethrin clothing spray is readily available. Of course that is not the only environmental toxin that can cause trouble. More on that here: Parkinson's and Pesticides

tinyurl.com/y8tckmx4

Household insect foggers (“flea bombs”) cause Parkinson’s.

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Qigong has been helpful to me personally. My story is here: healthunlocked.com/parkinso...

[Rebtar in reply to park_bear]

We've talked about qigong before, PB. I did it for a while, still do occasionally but not daily by any means. Exercise seemed so much more helpful, at least until now, and there's only so many hours in a day.

I remember flea bombing several houses I lived in in my 20's. Plus my dad had PD. And the past few decades have been full of stress.

Anyway, I took the intensity of my workout down a notch today and I feel better. I kind of had a freakout moment this morning, after a strong tremor in my arm woke me up during the night. And yesterday I suddenly had more difficulty writing with my right hand, which is my "good" side. It was a stressful day aside from the symptoms, no doubt that had to do with it.

Thanks for your comment -- Sometimes we just need reassurance from our good friends in the PDosphere.

[park_bear in reply to Rebtar]

You are very welcome, rebtar.

I agree on the importance of exercise. I too have had to cut back due to an overuse injury on my good side, and I too find it concerning.

Stress will aggravate any condition. Sounds like you are feeling a bit better and that is a good thing.

[laglag]

Have you tried Rock Steady Boxing? rocksteadyboxing.org

I also take Krill oil, Vit D3, Protandim and eat healthy chocolate and coconut oil. Something has helped because I have not had to increase my meds. I take 4 C/L, in the form of Parcopa, 2 Azilect & 2 Amantadine. Thinking of trying Thiamin but haven't yet. Diagnosed 14 yrs ago at 46 & have been doing RSB for 11 1/2 yrs.

[Rebtar in reply to laglag]

Hey Laglag -- I did RSB for a while and really liked it. Then I got sick with a bad bronchitis last August, was out for several months and when I got back to exercising, changed the routine to avoid the long drive. I'm thinking of going back -- twice a week -- the camaraderie makes a difference and it's a good workout. I was getting arm muscles for the first time in my life!

I think the progression has some to do with what we do -- exercise, supplements, managing stress -- and in part is just luck of the draw. That's what scares me at times -- I'm doing all I can to take care of myself, but I really don't know what is helping, or what I can do that might help more. Keeping at it though. Thanks for your comment.

[Hikoi]

Rebtar,

You raise an interesting point, does pd progress on a smooth decline or does it have short rapid declines thrn levelling off until the next one. I dont know the answer.

Though it may be difficult to accept I think you are just experiencing normal pd progression and the regime you are currently on isnt containing it. i take it you are not taking any conventional drugs but are you still taking mucuna?What does your functional neurologist recommend.?

[Rebtar in reply to Hikoi]

Thanks for your reply, Hikoi. My symptoms were quite stable for a while and this change has happened over a couple of months. It could be that the neurological changes reach a threshold where new symptoms manifest. Yes, I think this is normal PD progression, and it's a call to review what I'm doing and make adjustments where I think it may help.

Yesterday was also a particularly stressful day, and that may account for some of what I was feeling this morning. I adjusted my exercise routine to a bit less intensity today, and felt better.

I just saw my functional doc and I'll be trying a couple of new things over the coming months. I have started to experiment with some sinemet along with the mucuna, and we'll see where that leads. There are always new things to try, new paths to follow, and new attitudes to try on :-).

[Bailey_Texas in reply to Rebtar]

If you are lucky like me sinemet (carbadopa levodopa) will restore your life to what it was before you were diagnosed. i was in my 8th year when i started sinemet and for 3 years i was 99% normal.

[Rebtar in reply to Bailey_Texas]

Thanks, Bailey. We will see.

[Greenday in reply to Bailey_Texas]

What had you had been taking before the 8 years?

[Bailey_Texas in reply to Greenday]

Mostly ropinirole and azilect

[laglag]

You definitely have the right attitude, which is not gjving up! Hang in there & keep trying new things. I know it's tough, but keep fighting!

[JANVAN]

Hi Rebtar ! Can you send me the post of Silvestrov about Mannitol and L-Dopa ?

Do you use Mucuna ??

[Rebtar in reply to JANVAN]

Yes, I use mucuna. As far as I know, Silvestrov has not written about mannitol. I'll try to find his post on his protocol.

[Rebtar in reply to Rebtar]

healthunlocked.com/parkinso...

Look for protocol about halfway through post.

[M1tz1]

Hi Rebtar, John Pepper explained that overworking at the gym made him exhausted and didn't help his PD. He went over to Fast Walking which he built up to an hour every second day; and now people can't believe that he has PD.

[Rebtar in reply to M1tz1]

Yes, I will be revising my exercise program. Fast walking didn't work for me because I get foot cramps/toe curling. However that's the one symptom that's gotten better, so I may try again.

[Gioc]

my opinion is: "Normal highs and lows ...”

Try not to introvert, find something important to do that is not overwhelming that you like. Continue with the same life for a while and see. We all have ups and downs that we tend to dramatize, especially the low 😀

[Rebtar in reply to Gioc]

Yes, Gio, you are right. I tend to be too inwardly focused and hyperfocused on symptoms. It causes me a lot of suffering and i'm trying to improve.

[Gioc in reply to Rebtar]

There is nothing wrong with this, your concern is appropriate to the situation in which we find ourselves. The fact is that PD is a big problem and it tends to fix the person very rigidly on the symptoms. It is a completely normal and adequate concern that we all feel, if we then add the discontinuous effect of the medicines we take the thing is not at all easy. I was lucky and I have reached a certainty on the use of b1 so I do not worry too much if I have a slight worsening especially in winter or fatigue or flu, because after three years of experience I know I will come back as good as before as well as this year has done, but at first it was not easy at all. My UPDRS test, videos and friends are clear. Gio

[AmyLindy in reply to Gioc]

Me too !

[Gioc]

In any situation we may be in a cause or effect position. This is a difficult world, sometimes a mountain collapses on you.It nor did it intend to collapse on you, just because you were there! In other words we happen very overwhelming things like the PD and we wonder why it happens to us, but there is no why, it is a chaotic and random world. So we look for a point from which to be a little more "cause" and a little less "effect" and with a positive attitude we would come out of it. Gio

[Lynne1946]

I have elxamctly same symptoms and just got DBS surgery. You need to get it asap.

[annmariebaird]

Have you given DBS any thoughts?

[Greenday]

You said you've been taking thiamine and reduced to half dosage after consulting Dr. Costantini when symptoms started to worsen. Did you feel any improvement after a month on half dosage? If not, did you contact Dr. Costantini to let him know that the thiamine treatment does not work on you even after the readjustment?

Perhaps 2g Thiamine is too much for you. According to Dr Costantini you should only see improvement in symptoms when on the right dosage and also suggests short breaks healthunlocked.com/parkinso.... Also, you may be undermedicated, I suggest to contact your neurologist for assessment. I'm not aware of how alternative treatments such as "Silvestrov ldopa protocol" can work through time, you can be more specific.

[ddmagee1]

Sorry to hear of your increased difficulties! Recently I became more fatigued than usual, so I cut back on strenuous exercise. Also, I am now taking Centrum multi-vitamins, which helps. Within the last few months my neurologist has increased my dosage of sinemet. That has helped. Also, I find that if I have an emotionally draining day, that makes me feel more fatigued. Hopefully, you will find more ideas to help yourself.