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ALaurenLB1

Need help, Hate knowing its Parkinsons

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My short story:  I am a 34 year old female and recently, about 2 days ago, it hit me since last year I had been on a slow decline downward from Parkinsons disease.   It was the beginning of last year I started walking strange, with physical therapy helping only temporary for a "back problem".   My legs were stiff and the walking was slightly harder then.   This year, the beginning of, I saw a foot doctor and a neurologist to find out that I don't have MS.   I since saw a rheumatologist a month ago and she sent me back the neurologist, whom I'm seeing next week for "stiff" legs/feet.

 

Now said, I must say I am disenchanted about my medical experiences.    Right now, I have micrographia (small handwriting), hand tremors, stiff legs, shuffling feet, and muscle spasms in my lower arms.    I am worried to death about my health.   I am crying.    I am nuts.   I have no one near to me with Parkinsons.  I am feeling alone. I have family, a mother, father in their 60s and a brother 2 years older.   I'm a single woman in my 30s with no kids.

My questions:

Thus, how do I cope with these intense feelings?   Is there Parkinsons support groups in the Chicago-land area?  Where are they at?

 

When do I tell my mother and father and brother I have Parkinsons?   Should I hide the diagnosis?

 

And, finally, what alternative therapies or at-home remedies have people tried for newly diagnosed Parkinsons disease?   Did they work?

 

Also, Is there anything I can do to feel better until my Neurologist hopefully prescribes me medicine that works for newly diagnosed people next week?

 

 

Thank you for responding and listening.   

The undersigned,

Lauren

 

 

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Lauren, are your tremors on one side or both?

It would be best to see a Movement Disorder Specialist, this is a neurologist that specializes in Parkinsons.

If you do have it, I'm sure there are support groups in your area, don't go to one until you know you have it, don't tell your parents until you know for sure either.

When young people get PD, they do very well for quite a long time, I know some people that have had it over 30 years and are managing well.

Don't jump to conclusions yet.  Back problems cause a lot of havoc in the body, your symptoms could be related to your back issues.  The back controls the whole body.

This on-line support group is very good, come and talk often for support and help.

 

 

 

Edited by ellaangel2

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I would not start worrying your problems is Parkinson's until you are diagnosed.  I agree with ellaangel2, try to see a Movement Disorder Specialist, they are trained to spot Parkinson's symptoms and request a DaTscan!!  This will confirm if it is indeed Parkinson's or not.

I'm newly diagnosed and just in the last couple of month after finding this site, I've learned so much from everyone here.  I've sat and read blogs, new and old, just to learn.  So if you do find out it's Parkinson's, come back and join us. I'm in the Houston area and we have a great Parkinson's Society so I'm sure Chicago, being a large city, does too.   There is a lot of support out there. 

I did tell a family member but no one else until I had a confirmed diagnoses.  But it's a personal choice.  Some people might find comfort from friends and family while waiting to find out.

I've not investigate any type of alternative or natural therapies.  I have read some blogs on this site regarding some natural supplements that some have had success with. But again, wait to find out if it is PD and then discuss with your doctor. 

Try not to worry.  Stress will only make symptoms of any kind worse. And get the DaTscan!

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Hi, everyone of us has been where you are. Get a confirmed diagnosis. Begin to exercise. Life will go on. I was dx, in 2014, still work  full time. When I was first dx I had some balance issues so I did tell some co-workers but with exercise no longer have that issue. Still only have slight tremor and am on Azilect and Metoprolol ( when needed). When you see the neurologist he may be able to recommend a support group but try to find a group for those with "early onset". My husband knows and that's it. We still hike and stay active. Last year I spoke at a college commencement (not about Parkinson's). Stay positive, attitude is just so important. Keep in touch with this group, you will learn so much and have tremendous support.

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Agree with all of the above..., an MDS is important and I would request a Dat scan. I kept a journal if you don't want to tell anyone. It helps just to put your thoughts on paper. Educate yourself but don't go too far into the Internet rabbit hole. 

Good luck! 

 

LAD

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ALaurenLB1,

Your symptoms don't sound like typical PD to me.   PD usually starts on one side and progresses slowly, very slowly if you're in your 30's.  Your symptoms seem to be on both sides, which is not typical for PD.

I certainly would not tell your parents that you have PD.  It doesn't sound to me like you have PD.  I would not join a local PD support group.  It doesn't sound to me like you  have PD. 

I wonder if you were convinced that you had MS before it was ruled out?

Take a deep breath.  EXERCISE.  See a MDS and let them make a diagnosis if that is appropriate.  It is important that you get the RIGHT diagnosis; not just any diagnosis.

If you are diagnosed with PD, you will quickly discover that there is no medication that does anything to modify the course of the disease.  All we have are medications that hide the symptoms and all have side effects (some of which are worse than the disease).

Good luck and let us know what the neurologist says.

 

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