PD With ET

[Dtwolfe63]

I'm wondering how many of you have both Parkinson's along with Essential Tremor...

[bassofspades]

Me

[Dtwolfe63 in reply to bassofspades]

Were they diagnosed at the same time. This confused me a great deal. I present with PD, but I have overlapping symptoms of ET. How can this be?

[bassofspades in reply to Dtwolfe63]

For me, i have intention tremors, not resting tremors, along with many pd nonmotor symptoms.

[bassofspades in reply to bassofspades]

Diagnosed as et first then they added pd to the diagnosis later as the nonmotor symptoms came out.

[M1tz1 in reply to bassofspades]

I'm not a PwP but the wife of a deceased Parky who also had Alzheimer's. Some years ago I developed a bad right-hand tremor and my GP sent me to a neuro. He said it was not PD but that I had Intentional Tremor. I had started giving my husband large doses of coconut oil for the Alzheimer's and took it myself. Suddenly realized after some time that my tremor had gone. Now that he has died I'm not taking much coconut oil and the tremor is back. Also find my body sometimes shakes when I'm asleep and it wakes me up.

[bassofspades in reply to M1tz1]

sounds like you should get back into the coconut oil. Hope it doesnt get worse! Good luck, friend!

[M1tz1 in reply to bassofspades]

Thank you bassofspades. I'll take your advice and perhaps start exercising more. Bless you.

[bassofspades in reply to M1tz1]

just as an aside, are there any potential causes that your man was exposed to that you might be getting exposed to as well? Some examples are well water, moldy hay, pesticides, roundup, mercury...things like that? If you can figure this out you may be lucky enough to nip it in the bud. Take some time to really think about this. I wish you all the luck in the world!

[M1tz1 in reply to bassofspades]

Yes. I once mentioned something here about the tick and flea pesticide we put on our elderly cats' necks. It could have started Ole's PD. In winter they always slept in our bed for warmth and they still snuggle down with me but I've stopped using that treatment. I'm 82 and I think that if there is some PD showing itself, I can get it out of the way by diet (including coconut oil) and exercise. What I didn't tell you is that I'm finding it difficult to balance when I walk. Lack of fitness or something more insidious? Thank you for caring, bassof spades. You're a dear person. How are you coping with your PD?

[bassofspades in reply to M1tz1]

Im dealing with it, thank you. Im 49 and I'm a fighter! I intend to figure out a cure or at least halt progression. Im better than i was a year ago and still improving as time goes on. I want to help as many people as i can and take all the help i can get. This website and the people who contribute to it has been a godsend.

[Dtwolfe63 in reply to bassofspades]

This is really great news that you're better than a year ago. I went through this with my mother the last 6 years of her life (She passed away Nov. 16, 2027). So I kinda know what I'm facing. Being able to discuss with all of you giving people eases my tensions. Thank you.

[M1tz1 in reply to bassofspades]

Your determination is in your favour, bassofspades. I'll pray for you. The people in this group have been wonderfully supportive. Hang in there.

[Ajssister in reply to M1tz1]

I'm sorry for your loss. How much coconut oil were you two taking? My bro has et or pd n I'm trying to help. Thank you for your time.

[M1tz1 in reply to Ajssister]

We started with the usual dose of one Tablespoon twice a day, then gradually increased it to roughly 6 Tablespoons in all by giving it not only after all meals but cooking with it. I was lucky enough to find an online programme about reversing Alzheimer's and I did succeed with Ole's Alzheimer's, only to find that he also had PD. The AD programme featured Dr Mary Newport who brought her husband back from AD using coconut oil. I don't know if she also had him follow the recommended totally fresh food diet (no grains, no glutin, no sugars and sweeteners, no preservatives and additives, no processed foods). Eat high good fats, little protein and almost no carbs.

[Ajssister in reply to M1tz1]

Thank you. Big help. I’ll get right on it. God bless.

[Shakinginnc]

I was diagnosed with heretical ET in 2013 since my siblings have them also. But in Nov 2017 when I changed Neurologists I was diagnosed with PD presenting non motor symptoms.

[M-o-ggy]

This confuses me. I thought that the tremor was part of PD

[Dtwolfe63 in reply to M-o-ggy]

Resting tremor is supposed to represent PD. Essential Tremor is basically the opposite of PD. But I present with both types of tremors which makes it really confusing for me. I guess I'll figure it out as it goes along.

[JohnPepper]

Yes! I have both. Some people like to muddy the waters by claiming that you can't have both, it is either one or the other, which is absolute nonsense!

[Dtwolfe63 in reply to JohnPepper]

Thank you so much, John. It's so good to know.

[Hikoi in reply to JohnPepper]

Good heavens, This is the first time I have seen you say you have two types of tremor John. You have often stated that you have essenial tremor but not resting tremor. Now has your story changed!

I have never read anyone here claiming that you cant have both. I agree with you John that would be nonsense

[JohnPepper in reply to Hikoi]

When I said I had both I was saying that I have Pd and essential tremor!

[Hikoi in reply to JohnPepper]

My mistake, thanks for the clarification.

There is a higher incidence of people with ET later developing PD.

[Shakinginnc]

I also have both, and although my siblings and myself have essential tremors I am the only sibling to be diagnosed (as yet, since our median age is 68 ) A related effect of PD is neuropathy which strangely I share with the only sibling I have who does not have essential tremor. So It’s a crap shoot but family genetics do play a big part or at least in my family.

[CEW7919]

I was diagnosed with PD several years before I was also diagnosed with ET. I take medications to treat both. The tremors for both are well controlled for now but I still have many of the other symptoms of PD. So, yes, it is possible to have both diseases at the same time.

[bassofspades]

It seems to me that Essential Tremor is what they diagnose people with when they have unexplainable causes of their tremor. In my case, the first Neuro doc I saw explained my diminishing handwriting as "Parkonsonism", he did not want to call it Parkinson Disease at that point until an MRI confirmed that I had no tumors or masses. My next symptom to appear was intention tremor (tremor with movement) and thats when they called it Essential Tremor.

Propanolol is a weak beta blocker and should help with Essential Tremor. Ask your doctor to hook you up. I work with a Cardiologist that had this problem and I told him (II told HIM! A DOCTOR!) to try Propanolol. I saw him 2 weeks later, he thanked me and said it really helped him. Only thing is it makes him sleepy when he drinks wine now. But he was OK with that, he just doesnt take it when he drinks wine!

Good luck and let us know how it goes!

[amykp]

Me too, me too! I've had an essential tremor since college (hint: 1970's) and I think it is pretty much completely unrelated to my 3yo PD (unless they are both symptoms of a messed up brain!) My ET is on one side and the PD is on the other. The PD is mostly dystonia.

But here is a funny thing, now you bring it up: I've been taking topiramate for the ET for over 10 yrs. It works so-so. But at one point about a year ago I went off (I take a topiramate drug holiday every so often, just 'cause) and what astonished me was MY PD SYMPTOMS GOT WORSE.

And when I went back on, my PD symptoms got BETTER. Significantly! I don't think it was placebo effect because I wouldn't have expected it--I wasn't looking for it.

I've scoured the web and can only (rarely) find topiramate listed as an adjunct to sinemet. I think to stop dyskinesias? Very little on it.

Anyone out there on topiramate? Noticed it's helped? (PS I don't take anything for the PD yet BTW)

Thanks