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TheCount

Newly Diagnosed and scared

21 posts in this topic

Hey everyone, this is my first post and i am a little nervous. I was diagnosed last Wednesday and since then  I haven't been able to think about anything else. I am 39 yo, marred with 2 very young children. This started about a year ago for me and after numerous doctors I finally received the answer I didn't want...No meds (the dr gave me klonopin for at night to help my mind rest and I have been on mirapex er for restless legs) yet and I was told to live my life like I normally do. I did join a gym and am going to try to go 5 days a week. The hardest struggle for me is not knowing what the future holds. I realize that we don't have crystal balls and a million things can kill me, its just hard.

This online forum seems to be a wealth of knowledge and I plan to visit often.

 

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Hello TheCount,

Welcome!  You've found the right place...a lot of knowledge and support on these forums.   I am 48...was diagnosed 15 years ago at age 33.  I have two young children also (12 and 9, maybe not so young!).  I didn't have either of them when I was diagnosed, though.  Take heart...young onset is generally a fairly slow progression.  We all progress differently, but you have many, many good years ahead of you.  There are many great medications and treatment options.  This is a very manageable disease and there is significant research being done.  Best advice...educate yourself, find good support (like this forum), exercise, get a good MDS, and relax.  I still work full-time and am fully independent.  There are frustrating days and times, for sure; however, there are many good days.  Know that you are not alone...we are here...lean on us as you need!

Peace and blessings,

Mihai (Michael)

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I was diagnosed 2+ years ago at 45.  I have 3 boys.  I was terrified and felt horribly guilty for bringing this into our lives. It was not in the plan.  Honestly, I cried a lot those first few months. However, you will be OK. You will be better than OK because you will look at life differently-little stuff is just that- if your kids want ice cream for breakfast one day - have it with them! Life will be different but it can still be great.  Plus you're a DAD  - you don't quit! It's not in our DNA. 

Try to find a PD specific exercise program. I do Parkinson wellness recovery (PRW4life.org), yoga,  tai chi & my husband and I started ballroom dance lessons 2 years ago. The dancing has been great and we even go to formals now- tux and gown! That would never have happened had PD not become part of our lives. 

A good MDS is really important as well. This forum is great, but the Internet can be a rabbit hole. Your attitude and your mindset are an important part of your fight.  Don't read negative posts!

I take mirapex as well. It has worked well for my symptoms so far. 

 

Stay positive & stay hopeful!

 

LAD

 

 

Edited by LAD

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Welcome!  I'm also fairly new here, 44 years old with a 19 year old son in college. While I wish I didn't have PD, I do feel like it has changed my life in positive ways also.  I am much kinder and gentler to myself now and I know my own health has to be number one.  My onset was sudden and right before diagnosis I feared I would have to stop working because of my symptoms.  Now my life is in balance thanks to exercise, many supplements and a small amount of Sinemet.  I find I appreciate everything now - walking, exercising, laughing, my work, seeing the trees and flowers.  I think because thinking of the future is scary, I now live in the present.  Not that there are not times I am scared and feel despair, those come too, but not very often anymore.  And I feel like I am actually healing now, my symptoms continue to get better every month.  So be kind to yourself, accept the fear - we all have it and do your best to love what you have and what is around you!

best wishes,

Lena

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Hello TheCount

I am 52 and was diagnosed at 40 ..12yrs ago.. i have one son 22yrs  .. he is great .  Now well still here, and there are support groups out there we can compare notes about meds, or just everyday stuff it's good as we are all different and can pick up tips etc..as i find one med can work better with one person than the other..anyway i hope all goes well for you.

best wishes

em

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Ashwaghnda and mucuna (natural Dophamine) are one of the best natural supplements for PD to keep in mind. I heard some people take mucuna instead of sinemet.

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Hi TheCount,

Just wanted to say few words, first welcome to the forum. I was in your shoes exactly a year ago. I know one thing for sure is emotionally you will feel better. I was lost and scare,  in tears+++. Now I feel better, less feeling poor me moment. Some mornings I still woke  up and didn't  believe I have PD , wished it was a dream.  Try to keep yourself busy, time will fade your darkest feelings.  I am working full time with two kids, I just have time doing exercise at home i.e. pushing myself to run on Treadmill about 5w and playing table tennis with the robot and bouncing the basket ball on floor. It all works out well since my dx. I am still ok, not taking any medications.  I was told Just focus on the now and enjoy just being; because this present moment is a part of the future I  used to worry about and soon it will become a part of the past.  I am trying very hard to train my mind in this path because I am a future freak type of person.

Take care yourself,

PinkDaisy

 

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Be VERY careful of klonopin. Addiction is easy and rapid, and "tolerance withdrawals" are almost a given, meaning you will take more and more.

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1 hour ago, MusicMan said:

Be VERY careful of klonopin. Addiction is easy and rapid, and "tolerance withdrawals" are almost a given, meaning you will take more and more.

Thank you Musicman for the heads up. I was actually on it for about 6-7 years up until last October and I actually had no issues whatsoever. It's actually not even doing anything for the anxiety and I have a message into my dr to switch me to something else.

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best of luck.  diagnosed in 2002 at 48.  not too bad at 63.  exercise is imho the most important treatment, i've heard more than one MDS say you take drugs so you can exercise so i wouldn't be that worried about taking meds sooner than later, , especially starting sinemet (carbidopa/levodopa).  for exercise, i use a regular bike on an indoor trainer, the trainer on sale was about $150.00.   i follow the jay roberts, pedaling for pd recommendations, kind of, 45min 3 days a week, 80 rpm, 70-80% maximum energy usage (or whatever).   your're trying to maintain  neurons/stimulate dopamine receptors, might be thru increased blood  flow, your muscles secreting chemicals that affect neurons, possibly encouraging more branching, i'm not an expert.  exercise programs which force you to change direction, stimulate the most neurons are also effective, maybe you can find out what is being done at  a local research university if there is one nearby.

when i was first diagnosed was playing/coaching soccer, continued for another 3 years.  after every soccer game, pd symptoms were reduced for about a day.   quit soccer when i started to get charlie horses.  so i can attest to how super aerobic exercise reduced my pd symptoms temporarily and might have slowed my progression.   i also tried  every alternative treatment that i found on the internet, chelation therapy to remove mercury via IV's and later DIY at home, low dose naltrexone, IV glutothione, trying every supplement, not sure if anything helped.  my point is if some herb or supplement really really helped in the age of the internet there wouldn't be a mystery about the effectiveness.   l take curcumin, 1/2 of a multi-vitamin once a day.  i  take other supps less often but won't list them here.

research is going gang busters, there is a good chance that in the next 5 years there will be treatments that will slow down or reverse pd, so try not to worry.  you should sign up for the MJFF trial finder.  and stay on top of the new research and have your bags packed, ready to go for the "cure", it's likely not going to be offered initially everywhere.
 

i  suggest you get the book "THE NEW PARKINSON'S DISEASE TREATMENT BOOK" by AHLSKOG. The older edition is still useful but i suggest the newer version.  It's mostly about medication, little on exercise or alt-medicine.  it gives you all the info you need to double check what your neuro is asking you to take, they aren't perfect and are seeing a huge amount of patients.

start learning about disability insurance, not that you'll be disabled soon but so you'll maximize your benefits AND EVENTUALLY GET SSDI, having pd doesn't guarantee you'll get it.  totally different insurance policy than SOCIAL SECURITY.

one last thing, all the new pd drugs cost a lot.  if your MDS/NEURO prescribes one of them and you have a large copay, ask him/her how much better this new drug is compared to sinemet immediate release or sinemet cr. 

 

 

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Hi soccer, I see you mentioned charliehorses, and it was interesting to me. About 3 years in for me, and I am suddenly getting them in my hamstrings and calves all the time. They are not crippling (yet anyway) but concerning. I can usually massage them away.

Did you find anything that helped ease or eliminate them?

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I too get earth shattering charliehorses in my calves and hamstring.....worst when I've had a lazy day...don't know why...

The  best thing to do is walk them out....but also taking magnesium has really helped them come few and far between.

D

 

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Eat more bananas!!!  Potassium is supposed to help charlie horse cramps!

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TheCount- thought of you when I saw this 

image.jpeg

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10 hours ago, LAD said:

TheCount- thought of you when I saw this 

image.jpeg

Thank you so much, it's getting easier day by day. The stiffness and pain Have been pretty bad lately; I see my doctor on the 27th and she said at that point we can talk about meds. Exercise and swimming have  been helpIng just keeping  my mind busy work, coaching my son's baseball team, honey do list.... Thanks again for thinking of me I appreciate it and I am so glad I found this group.

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Hi Thecount.

Welcome to the forum. It's rough at the beginning learning you have PD. It DOES get better. Glad to hear you're on the exercise path. There is no comparison to bad days without exercise vs. bad days with exercise!

I'm currently 59. Diagnosed at 57. As you'll learn there are usually hints of symptoms well in advance of diagnosis. We just don't recognize them as such. It would just make us a bunch of hypochondriacs.

You'll ultimately find a groove. 

Best to you.

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Well said papa57... We can't control the fact that we have PD but we can control how we respond to it. To me, exercise is the best tool in my toolbox in my daily routine. To me, it's  just as important as my meds everyday. 

Keep moving!! 

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You are welcome"THE COUNT".This is a great forum,I see you have been using anxiolytic klonopin 6 or 7yrs ago.Anxiety is one of the symptoms of parkinson.i had this since my teens and have been on low dose anxiolytic med for more than 20yrs ago and never got addicted.I take mine at bedtime.According to my MD,if you work with your doctor,the fear of addiction is minimised.Now that I have PD diagnosed about a yr ago,MD wants to add antidepressant,because anxiety/depression usually exist together in PD according to my MD.I have little kids like you,temporarily on disability,just to get the right meds to work ,before going back on my job.It is a scary experience,but we can't afford to give up hope.Hope for a cure is the best we can have as we keep fighting this disease.I bike,walk,lift weights and box 4 to 5 times a week.Hope to get the right combination of meds soon.May God see us through! Amen.

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