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Melissab

Official diagnosis today

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One month exactly into my 38th year, I got "the" diagnosis and to be honest, I feel so relieved.  I started this journey a year ago (officially) thinking I had MS and after all the tests, scans, pokes and prods, a handful of neuros and other specialists, and after finally seeing a wonderful MDS at Northwestern Medical Center, this is the card dealt to me.  I told her I would hug her if she could just give these things a name.  She said my stage is mild but I do have tremor, bradykinesia, and rigidity.  I was truly beginning to think I was going crazy. For now, we will stay away from any meds other than Amantadine to help me fight sleepiness in the daytime. It will be nice to have somewhere to "go" and I look forward to getting to know all of you better.

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That is basically where I was about 2 years ago.  So I know what you are going through.  It's a gut punch to be sure.  But, my best advice to you is to try to live you life as normally as possible.  And anything you've always wanted to do (e.g. Bucket List) kinds of things, don't delay doing them.  Don't go broke in the process, but really, don't let PD stop you.  You've got a while where the disease is really going to be more of an annoyance than anything else.  

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Hi Melissab.  Welcome to the forum.  We all help each other on this journey so I'm glad you found us.

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Melissa-I saw your post late last night and wanted to write more.  I was diagnosed 3 years ago and was in shock, disbelief, sad, angry...all over the map.  It took a little while, but I am in a good place now.  It's a roller coaster ride.  There's a process.  Realizing that my life is not going to go as I had planned, I had to come up with a new plan.  Life will be different but it can still be good.  I look at things differently...seize the day....if you want to do something and you have the means to do so...go for it!  Eventually, PD becomes just another part of life.  

My best advice is exercise....a PD specific program is beneficial.  There are many out there...dance, yoga, tai-chi, boxing. I personally do the program  PWR! (www.pwr4life.org) and my husband and I take ballroom dance lessons.  Find something you enjoy and be consistent.  

This forum is great....only follow things that are positive.  

Again, welcome and good luck.  

 

LAD

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Welcome Melissa! I'm 37 so I understand you completely. My diagnosis came as a surprise as I thought my problems were exclusively due to stress. You've been given very good advice, don't delay things and start taking care of yourself. Personally, I think that if you're sleepy during the day you should sleep more at night instead of taking meds to solve it. But everyone has their own reasons. I'm not on any meds yet either because I want to have more children. Take care!

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Thanks everyone for the welcome! I'm still trying to wrap my head around this and what it could mean. It's good to know there is someplace to go that people get it!

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On 7/27/2017 at 8:57 AM, LAD said:

My best advice is exercise....a PD specific program is beneficial.  There are many out there...dance, yoga, tai-chi, boxing. I personally do the program  PWR! (www.pwr4life.org) and my husband and I take ballroom dance lessons.  Find something you enjoy and be consistent.  

Yes, very much this.

 

DW and I recently embarked on an exercise/weight loss routine.  Right now I'm working on fitness more than weight loss (working up on duration on a stationary bike - currently at 40mins 4x per week, stepping up to 50 minutes next week), though some weight loss is coming along for the ride.  I have an interview on Wednesday for a supervisor position at my current place of work, and after that I will probably try going low carb to enhance weight loss.  If you go really low carb and go into ketosis you can get some bad breath and body odor issues, and I really don't want that during an interview.  Interesting aside - DW said that people on levodopa therapy can't use the urine ketosis test strips as the meds cause a false reading (not sure if false positive or negative).

 

Anyway, I do notice on the days that I ride that even if I'm late with my meds my symptoms are less apparent than on days I don't ride.  So that is a real, and clear benefit.  If I can manage to stick with the exercise I will probably experiment with reducing my meds to see if that is viable.  Fewer pills is always a good thing if you can tolerate it.

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3 hours ago, stump said:

Yes, very much this.

 

DW and I recently embarked on an exercise/weight loss routine.  Right now I'm working on fitness more than weight loss (working up on duration on a stationary bike - currently at 40mins 4x per week, stepping up to 50 minutes next week), though some weight loss is coming along for the ride.  I have an interview on Wednesday for a supervisor position at my current place of work, and after that I will probably try going low carb to enhance weight loss.  If you go really low carb and go into ketosis you can get some bad breath and body odor issues, and I really don't want that during an interview.  Interesting aside - DW said that people on levodopa therapy can't use the urine ketosis test strips as the meds cause a false reading (not sure if false positive or negative).

 

Anyway, I do notice on the days that I ride that even if I'm late with my meds my symptoms are less apparent than on days I don't ride.  So that is a real, and clear benefit.  If I can manage to stick with the exercise I will probably experiment with reducing my meds to see if that is viable.  Fewer pills is always a good thing if you can tolerate it.

I hope you stick with it!! 

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I'm an avid runner, have been for years. It's actually one way I realized something was going on...I was so tired and just felt stiff and like my legs wouldn't "go". I plan to keep this up especially now! I do a low impact weight class a few times a week as well.

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MelissaI know exactly how you feel.  After being told I didn't have PD by my primary and his PA, I was convinced I had MS.  I was crying because I just KNEW something was wrong - I'm  not happy to have PD but Its such a relief to put a name to it, to connect with others like me and to know how I can fight.  Welcome to the group!

 

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On 7/26/2017 at 9:17 PM, Melissab said:

One month exactly into my 38th year, I got "the" diagnosis and to be honest, I feel so relieved.  I started this journey a year ago (officially) thinking I had MS and after all the tests, scans, pokes and prods, a handful of neuros and other specialists, and after finally seeing a wonderful MDS at Northwestern Medical Center, this is the card dealt to me.  I told her I would hug her if she could just give these things a name.  She said my stage is mild but I do have tremor, bradykinesia, and rigidity.  I was truly beginning to think I was going crazy. For now, we will stay away from any meds other than Amantadine to help me fight sleepiness in the daytime. It will be nice to have somewhere to "go" and I look forward to getting to know all of you better.

I hope all is well!

 

LAD

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Just a quick update...I did end up doing genetic testing and discovered my early onset is due to a Parkin mutation (PRKN gene). It doesn’t really change anything though I did inform my siblings so they are aware and it does give me some info to pass along to my own kids when they are older. Did anyone else have this done?

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I've tested negative for all known PD genes. Women tend to get their diagnosis the hard way- all too often it's chalked up to the "Hysterical Woman" diagnosis, instead of taking patients at face level.  I had symptoms since 38, formally diagnosed one month after my 41st birthday. 

 

When you're ready, check out "Parkinson's Diva" by Maria de Leon, MD.  She's an MDS who was diagnosed with PD.  Lots of Dr.s will tell you being a woman doesn't change anything for meds- but that's complete BS.   A tiny 100 pound man woudn't respond the same on a meds dosage of anything that a 6'5", 350lb man would,  so why would a tiny woman?  Your gut instinct was right, remember that!! 

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