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amy2beth

Just diagnosed at age 40

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Hi,

 I am so glad I found this website because I’m just beside myself .  I’ve been crying for the last three days trying to accept the diagnosis. I’m angry, confused and scared! I  have my first appointment with a movement disorder specialist in December but until then I’m not sure what to do about the pain in my joints.  Ibuprofen doesn’t seem to touch it . Any suggestions?

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Hi Amy2beth, 

 

I was diagnosed on 10/23 (although I had suspected it for months). I was 47 but just turned 48. I know it's scary, and believe me, I've had my crying moments. But, once you've had some time to process things, it won't seem so "raw" every day. I'm sure your MDS will help you come up with a plan to manage the symptoms the best way possible. I have joint pain off and on, mostly in shoulders and hips, and lower back pain. I find that exercising helps: I ride a Theracycle daily, walk, and try to do some simple yoga poses a few times a week. Before my diagnosis, I did not exercise regularly - so there is hope for everyone out there!  ;) Just take a deep breath and try not to worry (I know that's easier said than done)! 

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Thanks Jill! I think I'm over the initial "mourning" period now but some days are worse than others. I haven't been exercising because of my hip bursitis but now I'm wondering if the PD caused that. Good to know you can/are exercising. I need to find something that I feel comfortable doing regularly. 

Are you on meds yet?

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Hi Amy2Beth,

I'm 39 and was just diagnosed last Thursday. I've had symptoms for awhile now, even up to 10 years. My main issues are an internal tremor, unbalanced, and now I have more noticeable  shaking hands.  I'm pretty confused about what medicines to start taking, I live in a small town and don't have access to a Movement Disorder Specialist. I've heard that Sinemet only works well for about 5 years, so it scares me to start something soon and then be out of luck in 5 years when I'd only be in my mid 40's. My mom and grandmother both had Parkinson's, so in my case I think it must be genetic although they were both diagnosed later in life (mom at 60, and grandmother at 70+). Very scared, but trying to take it day by day now. Hang in there!

Kat

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Amy2beth and anybody else I have not welcomed yet,

Welcome to the Club none of us wanted to join. PD can be scary and I know when I was first diagnosed at ager 35 I thought my world had ended. For the most part my world as I knew it had ended. After some time and many tears and multiple doctors I now know that my future I once thought I had is still there, just a bit different than planned.

Yes you will feel better once you decided what the best path of treatment will work for you. Work with your MDS, and discuss, ask question, if you feel that your MDS is not a good fit find another. I went through 2 till I found mine. Exercise is always good and so far is the only thing that shows promise of slowing this disease down.

Positive attitude is the next biggest thing. If you believe it, you just might manifest it. What I mean by this is if you think and believe that you are going to get worse and all is misery then all will be misery and you will get worse. If you believe that you will be fine and you can handle what is given, you will be fine and have everything you need to succeed.

I can honestly tell you that I am more happy now than I was 4 years ago before I was diagnosed. Stay positive, allow your self to cry when you need to, but convince your self that it will all work out for the better. I promise you it will.

Blessings to everyone

Any question for someone a bit further down the path just ask.

Adam

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Hi Amy2beth,

I was in your shoes about 2 yrs ago. Emotionally I am feeling  much better than then. You definitely will as well. I am healthy 48, diagnosed with Parkinsonism Sept 2015, diagnosed with PD Mar 2016, MDS confirmed May 2016. I am still doing things as before, no less even more,  but mentally speaking I am not the same. How could I feel the same when you have early set of PD with annoying symptoms. But I feel way much better than when initially diagnosed.  I am doing excise, vigorous types which  I never had before.  The best thing is I got a  Fitbit which motivated me daily. Working full time, looking after two kids; but  I try not to skip my exercise more than 2 days per week. I am medication free for now. You take care, believe me you will feel way better after you accepting the diagnosis. It took me about 12  months to reach this stage. PinkDaisy

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Amy2beth,

Yes, I am on Carbidopa/levodopa 25/100 mg (just one in the morning), and Pramipexole .25 mg (3X daily). These are pretty low doses from what I understand, and they definitely work to take the "edge off" of the bradykinesia and stiffness that I have; they also have seemed to help lift the negative cloud that was hovering over me. I take Vitamin D 2,000 IU, Krill oil supplement for joints and healthy fat, and Magnesium. I've been researching other supplements...think I need to get some CoQ10 next. Also, working on my diet...which has a lot of room for improvement! I actually lost a lot of weight due to the stress over this past year, so I've been trying to pack on a few pounds in a healthy way.  

Honestly, I would probably do okay without the meds, but having some relief helps to put the PD out of my mind...and I hope to stay on the lowest doses possible for as long as possible. Lastly, if you do end up on a dopamine agonist like pramipexole (Mirapex), it can cause compulsive behaviors and sleepiness (to name a couple)...just to caution you. 

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It's a process. It takes time & you are going to be ok. I am coming up on 3 years. Life is different but it's great! My perspective has changed-seize the day. I kept a journal in the beginning so I did not overwhelm my family. It helps to just write it down. 

Get a good MDS. Start exercising- a PD specific one is great but find something you love to do- anything but exercise is just as important as meds! Everyone agrees it's one of your best tools to fight PD. 

Feel free to reach out anytime. 

 

LAD

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Welcome to the club in which only a few have the privilege of joining. The best advice I could give a person just diagnosed, is the same thing my MDS at the DALLAS VAMC, gave me. Stay active, don't overdo it, and me telling you, that you have PD today doesn't mean that you have a new condition. In fact you have had PD for a long time so nothing has changed.

Just learn to live one day at a time and listen to your body and discover your own algorithms for managing "your" PD.

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Thank you everyone for your kind words and advice. Not that I wish PD on anyone, but it's nice to know there are people in the same "boat." Does anyone know why we were the lucky ones to get PD? :angry:

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I'm very sorry ,I remember being scared too

still-- joint pain?

I'm not familiar with that being associated with pd at least not at begining

anyone else?

 

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It feels like my shoulders, hip and back are tight ...maybe it's more muscular pain than joint, but nonetheless, pain. 

 

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1 hour ago, amy2beth said:

Thank you everyone for your kind words and advice. Not that I wish PD on anyone, but it's nice to know there are people in the same "boat." Does anyone know why we were the lucky ones to get PD? :angry:

For most of us it was just a bad roll of the dice of life.  A few have genetic components they can identify.  In my case there's nobody I know of in my genetic line with PD, so there's unlikely to be a genetic component that we can identify today.  I also have never taken and medications known to induce PD symptoms, nor AFAIK been exposed to any chemicals believed to increase risks.

 

With a little luck, some careful management of medications, and lots of exercise you can keep PD from being much more than an annoyance for quite some time.  How long?  Everyone is different.  I didn't see you say how old you are, but going by your avatar I'm going to assume 30's.  Some will get diagnosed in their 30's (I was 38) and make it to a normal retirement at 65 and still be doing reasonably OK at 85.  Others diagnosed in their 30's will be profoundly disabled before 50 and dead by 60.  Most will be somewhere in between.  

 

 

11 hours ago, amy2beth said:

Thanks Jill! I think I'm over the initial "mourning" period now but some days are worse than others. I haven't been exercising because of my hip bursitis but now I'm wondering if the PD caused that. Good to know you can/are exercising. I need to find something that I feel comfortable doing regularly. 

Are you on meds yet?

 

Not Jill of course, but I have a thread titled Summer Adventures Season Starting.  If you're not wanting to read a hunting story stop at LAD's picture from November 3 on page 2, but I recount a number of my adventures from this summer and fall that might help inspire you to get out there do some pretty cool things in spite of, and to help overcome PD.

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I have muscle and joint pain.  Sometimes its quite bad and I will have a couple weeks straight that my muscles feel like they do with the flu.  But most of the time its less intense.  I believe it's caused from the muscle rigidity of Parkinson's.  I do a lot of stretching to get relief. 

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The reason why we were chosen remains unknown. The only plausible explanations or factors are, environmental exposures, genetic susceptibility, and age. 

 

I have no known family history, and since I am only 42 now it is reasonable to conclude that environmental exposures may very well have been a major factor in the manifestation of PD.

 

The National Academy of Sciences, (NAS) and the CDC, subgroup ASTD, recently evaluated the medical and scientific evidence that the chemicals TCE and or PCE, is capable of causing PD, and concluded the evidence is strong enough to warrant VA Service Connection for PD due to such exposures. 

These same chemicals are also associated with Gulf War Service as components of the toxic soup Gulf War veterans were exposed to. 

 

These solvents are typically found in cleaners and degreasers. I have a campaign ribbon with an oak leaf cluster indicating two tours in the GW Zone. A total of nine months serving as a heavy equipment mechanic using degreaser daily. According to the MDS this more likely than not contributed to my PD. 

The natural aging process includes a loss of dopamine producing neurons as well as other pathological findings, some estimate that to be between 5-8% per decade. Dr. Okun, recently stated that this would be extremely hard to actually determine.

The genetic susceptibility factors are estimated to represent an estimated 5-10% of all PD cases. This being determined by multiple members over multiple generations within the same family who have PD. The currently recognized genetic factors are also present in members of the same family who never develop PD, therefore most believe, "genetics loads the gun, and the environment pulls the trigger". 

This is of course merely my own lay persons assessment of the research I have reviewed.

 

 

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Hi amy2beth,

I was diagnosed 16 years ago at the age of 33.  I am now 49 and doing really well.  I am fully independent and still working full-time.  I have been on C/L the entire time (currently on Duopa, a pump infusion of C/L...it works great at managing both the symptoms of the disease and the side effects of the medication).  My main issues are bradykinesia, rigidity, gait/balance issues, and dyskinesias (the result of long-term C/L use).  Don't let the PD diagnosis get you down.  It is true that we all progress differently; however, young onset PD is usually a slow progression overall.  I have two children (9 and 13) and a wonderful wife.  PD just becomes part of who you are, but it is never the sum total of who you are.  You will learn how to adapt and live with it.  We are here for you.  It's not always easy...good days and bad days...  Sometimes I am strong and can offer advice.  Sometimes I am weak and need a shoulder to cry on.  So much is happening in the PD world...new medications and treatments due to vast research.  Hang in there.  Lean on us as you need to!

Peace and blessings,

Mihai (Michael)

Edited by Mihai
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Dear Amy2beth,  Dear kat2017,

I too am a young onset. Was diagnosed at age 34, some 30 years ago.  I took  Ldopa (Modopar) right away, as I wanted to enjoy my "young years" to the fullest. An enjoy I did, I even  had a baby at 40. I am still taking Ldopa so don't believe  those who say it only lasts 5 years.  I also had DBS surgery in 2000 and 2002.

Being diagnosed with Parkinson's is not a death sentence.  You can lead an almost normal life (with reasonable expectations of course).  I worked until I was 55, but enjoyed a very favorable job environment in Brussels (Belgium).  I have the chance also to have a very dedicated husband who cares for me.

I am sure others have provided good advice ( i haven't read all contributions). 

Welcome to the club. Come and join us in our fight for the cure !

Mireille

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Welcome! Diagnosis at 46. Aware that how it impacts me varies from you and vice versa. Doc said, "each case of PD is different", which has led me down a path of inquiry into the unique way to treat my version.

Lectin Free Diet

Intermittent Fasting

High Intensity Cardio 6 x per week

Methylated Folate with B12

D3

Fish Oil 

Magnesium

Less computer time more meditation time

CBD 25:1 (reside in state where it is legal)

 

Sending care to you,

 

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Hi amy2beth and Kat2017,

Dx'd at 46, 3 years ago. As others have said, PD progression is generally slow, with young onset typically even slower than later onset. We are fortunate, I believe, in that we have time to come to terms with our situation. Michael J. Fox has some things to say about acceptance I find helpful (and hopeful).

PD's different for everyone, but in my case, there's not been much change in symptoms over the last three years. I work full time and, at this point, expect to continue until full retirement. I'm also doing some things now (travel, etc), rather than putting off what I may have less ability to do or enjoy later.

Exercise is huge--with the best exercise being something you enjoy enough to keep doing.

When the initial shock wears off, there are a lot of opportunities to get involved in PD research, from surveys, to genetics studies, to clinical trials. For me, being involved in research feels like taking an active role in my future, rather than passively waiting for (or fearing) what's to come.

Best,

David

 

 

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My husband was diagnosed at age 49 over 14 years ago. At the time we had 2 friends who had been diagnosed for about 6 years. The best advice we got was 1-live now and do everything you want now, 2-it is not a death sentence, 3-you can be happy while having PD, 4-for most people it is very slow so plan and stay ahead of things. His first symptoms were unexplained rib pain, feeling overwhelmed and tired which was completely out of character, and frozen shoulder.

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We have found medical marijuana to be a godsend for pain. My husband takes Ethos Innovates Relief 250 (250mg CBD/5mgTHC). No you do NOT get stoned and you don't smoke it. He has had terrible pain since diagnosis and this is the only thing that allows him to function and be almost pain free most of the time. Promotes bone growth too.

 

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Amy2beth-

Be present.... Eat the cake .... Buy the shoes...take the trip ....and my motto- dance like no one is watching!!! 

 

Stay strong & stay hopeful!!

 

LAD

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