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Valentin Gerber

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Dear all,

I'm not sure, if this is the right forum to ask my questions, if not, I'm sorry.

I'm a 48 y/o male from Germany. About 9 years ago I started to experience vertigo, dizziness and walking problems. It feels about walking when being moderately drunk. Or walking in an airplane (or train or bus) when it is a bumpy ride. I just can't put my feet exactly where I want them to be. As if the ground was moving towards or away from me. This is sometimes better, sometimes worse, but it is a constant condition. It is particular bad when climbing narrow, steep stairs. I also tend to bump into door frames or other obstacles when I come "around the corner". This can be both the inside or outside door frame side as I can't really determine the arc of my curve properly.

Have been to tons of doctors, but no diagnosis, no treatment. Over those long years I learned to cope with it, but it is still very annoying.

Now, the crazy thing is that I can ride my bicycle just fine, I have absolutely no problems with it. No vertigo, no swaying whatsoever. The vertigo is completely gone then. I can also perfectly skate on ice (or with inliners), also swimming is perfectly fine, even when the surf is up. But walking just doesn't work.

Years ago a friend said to me "Hey, this is very typical for Parkinson". To which I thought "Yeah, right. I'm early 40s and my hands aren't shaking", so I dismissed it.

But now my father at the age of 81 was diagnosed with PD. Also his hands aren't shaking, but for years he had been walking really badly, leaning forward, very small steps, often scratching over the floor. We all thought this was just age related but now it is clear that this is PD. And all of a sudden I remembered the remark of being able to cycle, but not walking.

Has anybody similiar experiences ?

I'm wondering what the best thing was to do now:

- Does a DATSCAN 100% safely prove of disprove PD or is it just one aspect?

- would it make sense to try L-Dopa just to see what happens? Would it work for sure?

I know that a doctor has to see about it, but it will take quite a while until I have an appointment.

Best regards
V.

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Beau's Mom    1,046

Welcome, V. You should definitely see a Parkinson's specialist for evaluation and a carbidopa/levodopa trial. If it takes away your symptoms, it is quite likely Young Onset PD.

The DAT Scan is used to determine whether a person has Essential Tremor vs. PD. It is not 100% accurate. Not all PD patients have tremor. The evaluation by the doctor and the medication trial are much less expensive ways to make a diagnosis.

I have a T-shirt that says. Don't Follow in my Footsteps. I Walk into Walls."

Bicycling relieves PD symptoms and any exercise protects the dopamine you still have left. Keep biking and swimming!

Dianne

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otolorin    25

Hi Valentin,

You are in the right place,I once had similar symptoms you described,I complained to my family physician,who waived it aside,and attributed it to the side effects of anxiety drug,which I was using for anxiety treatment initially.Beau's Mom is very right.You can as well contact Dr Okun on the talk to the Doctor's forum,before your next appoinment with your neurologist.Continue fighting it with exercises for now.

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LAD    184

 

All of the above !

See a neurologist--try to get a movement disorder specialist if possible. 

Exercise!!!!

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Dear all,

thank you so much for your replies, it means a lot to me!!!

Some other things I've noticed about me:

- my handwriting has gone extremely bad. It was never good to begin with, but when I tried to write nicely, I could do it. Right now I can barely do it. I thought this was due to rarely writing any more those days, but maybe not ...

- my hands aren't trembling. But when I put a spoon with soup to my mouth, the hand start shaking on the last 3-4 inches. I typically compensate by putting the mouth towards to spoon to "catch" it. (Yes, my wife loves it ...). Keyboard typing isn't a problem, also playing saxophone is ok. But those are rather firm finger movements.

- my vision has gone bad very quickly. I am far sighted, a typical age related effect. I have reading glasses with just 1.5+. However, without them I can't even read from a big flat screen. This has deteriorated a lot very quickly.

- I have sleeping problems that are close to insomnia. Without at least 2 beers it is almost impossible to sleep. But - I am *never* tired, I *never* yawn, no matter how much sleep deficit I have.

- with moderate alcohol consumption symptoms appear to be better, particularly the walking. Feels as if the muscles relax a bit. However, the next day starting early afternoon symptoms become very bad. I do not have a hangover or anything.

- coffee makes problems worse. I'm down to like 2 cups a week.

- I sometimes have problems to identify where a certain noise comes from.

- When I'm just standing still, after a while it feels like strong gusts of wind were pushing me to all directions.

Can you relate to any of those things? Or is it just coincidence?

And is trying Levodopa any dangerous?

So greatful for your help!!!
V.

 

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TexasTom    706

Exercise is good for everything! Muscles as they atrophy while not being used, as you loose muscle mass it will affect your balance.

Germany has some excellent neurologist, but I'd just start with a regular doctor to have a full physical and blood work.

Where in Germany (Wo genau?) are you located?  Summer time I was out enjoying long evenings bicycling all over the place, during the winter enjoyed the same trails for cross country skiing. I miss Germany!

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otolorin    25

Hi Valentin,

It helps in stretching and relaxing tight and rigid muscles,helps to strenghten weak muscles.Also helps with improving balance,by improving propioception.Your muscle require dopamine to function well,so exercise triggers the release of dopamine.According to studies done by experts,exercise is also believed to slow down the neurodegenerative process of parkinson.Depending on the type of exercise you do,the purposes stated above will be attained.

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Thank you so much everybody!!!

@TexasTom: I'm in Freiburg (black forest area), glad you liked it. Unfortunately I can't confirm your opinion about neurologists here, they firmly believe it's all just psychosomatic, but they weren't able to explain how this could possibly cause symptoms like this ...

Is there any diet that has been proven to be helpful?

Best regards
V.

 

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TexasTom    706

When I was 25 I had a doctor comment "if I didn't know better, I'd think you have Parkinson's, but you are too young for that".  

At 54 there wasn't any confusion as it was clear I had Parkinson's, but basically the comment why I hadn't seeked help years earlier.

So glad to say for 30 years exercise & sauna was the best medicine. 

Diet, I have a very hard time with some foods. Fish (salmon) and Chicken are easiest for me to digest. Beef (4oz or about 100grams) is the most at a meal, pork is much harder to digest. So ground meat (typically beef in USA,   50/50 beef/pork in Germany) - small portions.  Oh, I love maultaschen! Lots of green salads, berries, fruits, vegetables. Very limited bread and Pasta's. One good beer per day. Limited sweet (sugar, maximum added 25 grams per day).  I try to eat vegetarian, but something like Gyro's is too tempting for me.

I think a Keto type diet is best, but not always possible unless you always prepare all your own food.

I lived in Reutlingen when I lived in Germany, hence my love of maultaschen and the next day chopped up maultasche with eggs!  I still scream at my wife for throwing away old food. She cooks way too much, and throws out food after three days. Horrible waste of resources and money.  I haven't made rumtopf for years, but that was good and I didn't toss out any fruit!

 

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@TexasTom Thanks a lot. I've been to Reutlingen a few times for business. Nice little place, I don't like the local dialect though. I'm sure you also liked "Käsespätzle" :wink:

Amazing, the diet you describe seems to be helping me as well. Is there any scientific background to it related to PD or have you just found out by yourself what works for you?

And please, what specific kind of exercise do you do?

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