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Guest RobP

Young Onset - a difficult road

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Guest RobP

I'm 48 years old and was diagnosed almost 3 years ago in 2015.  I was having issues driving, sort of brain fog episodes, or would feel high anxiety when driving. Other issues were stiff arm, some fingers not fully moving on my right hand, right leg stiffness and shuffling, issues swallowing, loss of smell, and severe pain in my right shoulder and arm.  It all hit together in the Fall of 2015.  I went to my primary who first tried carpel tunnel treatment and sent me to a hand specialist.  I kept coming back which led him to believe that it was neurological.  So I saw my first Neurologist and within 10 minutes he casually told me it was Parkinson's.  I was floored.  I didn't know what to say or ask.  I was given a prescription for CL, starting with 1/2 pill 3x a day,  Both my wife and I were speechless.  Just anger and sadness. 

Thinking back, after being diagnosed, I remembered other issues from years back that may have been the start of PD symptoms.  I would get twitching thumbs sometimes after an extreme workout or doing a lot of yard work.  It didn't happen often and I ignored it. Even when I was in my early 20's I remembered my right leg would be in pain if I stood in one place for a long time.  I just chalked it up to not being in shape.  Later on, i started noticing getting uncomfortable driving on the highway for short bursts.  I thought it was just anxiety.  As I got closer to being diagnosed, there were times when I'd be driving and I couldn't remember where I was, and once got lost coming back from dropping off my daughter.

So, the dose of CL worked and I was amazed.  I could move, play guitar, felt better.  It didn't last long though, so on subsequent appointments with my Neurologist, he increased my dosage to 1 full pill 3x a day, then 2 pills 3x a day.  I didn't feel well from this, so he decided to add Azlect to the mix.  This made me feel even worse.  I felt dizzy, nauseous, like there were balls under my feet making me lose balance and extreme fatigue.  He also didn't initially note that I was on Cymbalta and once he did, called me and told me to either stop the Azlect or Cymbalta.

Throughout this, I was in denial.  It couldn't be PD.  I must have Lyme disease or neuropathy, something besides this.  I went to get a second opinion.  It was the same diagnosis.  But this Dr. pulled back the heavy dosages of CL.  He explained starting off slow and maintaining it with your progression to avoid an early tolerance.  I felt better but was starting the eclipse in to Anxiety and Depression.

The A&D was awful.  I never experienced anything like it.  The apathy, the suicidal thoughts.  I was convinced I was starting dementia.  It took a long time to come out of it.  Seeing my doctors and trying to set myself right, I took proactive steps.  I did the DAT scan, which proved positive and made me accept the PD was all mine.  I then started seeing and therapist and psychiatrist.  The therapy and pharmaceuticals helped.  I was put on Cymbalta and Welbutrin.  I started Meditation and focused on exercising too. 

I was still having brain fog issues.  This was keeping me in the hell of depression.  My Neurologist had retired and I started seeing another Dr. in the practice.  He confirmed the brain fog is a symptom of PD and prescribed Pramipexole.  The dose was only 0.125MG.  Taking these added medications and the other therapies started to work.

At this point, I feel much better.  Brain fog went away.  I feel optimistic and have started doing things again from my old life.  I have four children, 2 in college, 1 in high school, and 1 in middle school.  I need to be strong for them.  When I cried over this diagnosis, it wasn't for me, it was for them.  I don't want to ever leave them.  I have to be proactive and positive about everything to survive this and move forward.

I still drive and work regular hours.  I won't drive on the highway anymore, just from fear of having a dizzy reaction from the meds or something.

Questions open to this forum are:

  • Has anyone experienced brain fog when driving, and usually reserved when just driving?
  • I have tremors, but only when I exert myself.  For example if I grab something or do yard work and pull my pinky down, put something in my pocket with my right hand, my other fingers start to twitch and tremor.  I've heard that PD tremors are usually prevalent when you are still.  That's not what I have.  Has anyone else experienced this?

 

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Hey RobP.,

Welcome aboard. Come right this way. You can drop your bags off and join everyone in the lounge for a meet and greet! Welcome to the PD Club at Hotel California. You can't check out and you can't leave either...!

But you can exercise, take your meds, stay hopeful and live your life. That seems like what people are doing on this forum. Everyone is asking questions and supporting each other through the tough times. Sharing resources and frustrations and just trying to make it another day.

I have the brain fog sometimes, but the Carbidopa Levadopa seems to have cleared that up mostly,. Sometimes I cant remember people's names or recall the name of objects. I still have terrible short-term memory and seem to forget stuff all over the place.

My wife has been helping by asking me questions and making sure I have numeric cues. For example think 4 before leaving the house. Do I have the four things I need most? .. car keys, glasses, wallet and phone?

If I start having apathy, she knows to ask me - what is your plan for fixing this thing? rather than just nagging me with  - can you please just do this, what's taking so long, nag nag nag?

It's a work in progress. But it's working and I'm making progress.

-S

 

 

Edited by Superdecooper
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Guest RobP

@Superdecooper   Thanks for the welcome.  It's comforting to have a support area for all these things that are happening,

Edited by RobP
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I am the same age and was diagnosed just a few months prior to you. I had many of the same symptoms but my tremor and stiffness are my primary issues. I had brain fog a few times before starting C/L but very seldom since. I take 800 mg  of levodopa per day and it controls my tremors for the most part. I have stiffness in my shoulder and back at times too. I still work a pretty stressful job and hope to continue for several years. I have never had any concerns with driving. No brain fog or slowness of movement that would impact my driving.

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Hi Rob P.

I am closer to your age and I have experienced brain fog and got lost while driving before,just  like you.I was diagnosed roughly 3 yrs ago and currently on sinemet 25/100 mg 4x/day.I have kids like you in college and high school and cannot afford to let PD take over my life.It has been a tough battle,but we can never give up.As they say,hope is on the horizon,maybe one day,there will be a breakthrough for a cure during our life time.I am yet to try any antidepressants,but will try cognitive behavior therapy first.Welcome on board this forum.It is warm and pleasant here,your questions will be answered as you wish by fellow parkies based on experience.Also medical experts are always available to help.Keep exercising.

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I am also your age and diagnosed 3.5 yrs ago. I had some of the same physical issues. I have not experienced brain fog. I also had major anxiety & depression. I still have anxiety but I’m managing it. 

I take pramipexole but no C:/L at this point. I exercise and help run a fitness program. I’m a coach for Rock steady boxing. Start exercising yesterday! 

Welcome & reach out anytime! 

 

LAD

PS I also blog...

 

https://ladpdjourney2.wordpress.com/

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Guest RobP

Thanks all.  This is very helpful and comforting to read the support in your posts.

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Also diagnosed at 45 in 2011.  Have 4 kids too.  My youngest are now in high school.  Other two in college. 

 

Mirapex was bad for me.  I call it the lost years.  I was zombified on that drug.  Emotionally flat and ICD's, sleepy all day with insomnia at night.  

Had DBS 1 year ago. Off all meds.  Feel healthier off meds. 

My youngest kids were 9 when I was diagnosed. Being a parent has been difficult with the depression/anxiety/med side effects. 

But I do the best I can. 

 

 

 

 

 

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Driving is bad for me. You have to think and act in so many different ways all at once that it’s too much for the brain I think. I limit my driving to the very easiest short routes in my life and only if I’m driving there for pleasant reasons. Tremor is not a dominant trait for me. I only get it when I’m stressed or trying to do something that requires a lot of coordination (which of course induces a kind of stress). 

A good therapist and a detailed plan for predicting, limiting, and eliminating stressors is a mandatory part of keeping me moving.  Including lots of things that make me laugh. Those of the things that help make to be available for my children.

I hope you find the things that keep you happy and moving!

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@Sherrie  Thanks for the input.  I was doing the same thing with driving, like limiting my distance and time of day.  Driving has actually gotten better for me over the last month and a half now.  I started new treatments with my therapist and more focus on meditation, which has helped with stress and anxiety.  I also had  .125mg or pramipexole prescribed to me along with 100mg of Wellbutrin.  I think all of these have helped with driving and even other complicated tasks.  After being so low for so long, I can definitely attest to the fact that being optimistic and engaged makes a big difference.

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@robp A couple things I do to limit getting lost, is no night driving. Also no "pressing on" when fatigued.   I can navigate around home, but was rushed and hit the bank then boxing. Neither is is an issue, but hit the bank then my boxing class. New roads, detours, and it was too much to make to my class. Uh oh. So I try to limit myself by plenty of time to get where I need to be and use GOOGLE MAPS with my phone giving me turn by turn directions.

 

 

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