Are you interested in sharing your story?

[Krukar]

I can share my story. Diagnosed 8/2020 but like most I have probably had Parkinson’s for awhile longer. I take C/L 3 times daily. At 65 and happily retired, married and living in Sedona Arizona, Parkinson’s has shifted my life.

I exercise daily and try to eat right, meet with 2 Parkinson’s buddies weekly. Writing in these columns has been great for my process. We try and live ‘One day at a time’ and place our trust in Jesus Christ.

Blessings,

Mike

 

 

 

 

 

 

 

 

[Kim]

Yes I would love to share my story. It’s a fairly new Parkinson’s journey as I was diagnosed in 12/20 at 56, but I feel like I am definitely not a typical case being female and a fitness instructor for close to 40 years. It is frustrating at times to say the least. When I am feeling good and able to do a lot, even my family will say (jokingly) “you don’t have real Parkinson’s.”

[Ally]

Hi Kim, I’d love for you to be part of the campaign. Could you send me an email at [email protected] today or tomorrow and I can fill you in on the details? Thanks so much!

[John Citron]

Probably my story is a bit more complicated than it is for other people, but that’s usually my case. Nothing is simple when it comes to me!

I was officially diagnosed in 2014 but had symptoms years before and took C/L and Amantadine for a number of years before quite successfully. The medication worked well enough for me to be able to work until late 2012 before everything started falling apart on me.

I started in mid-2004 with painful spasms in my legs and feet along with awful fatigue and tremors. Being a classically trained pianist, I noticed coordination problems in my hands at times which I initially attributed to being exhausted from work. Heck, I was not only working a 60-plus hour week, but I was also taking night classes in information technology towards my bachelors in IT.

It was the tremors though that scared me because my grandfather had Parkinson Disease. I distinctly remember him shaking all over and shuffling about. He lived with this during the time when there was no treatment for the disease like we have today.

My primary care doctor tried Toprol to stop the tremors thinking it was benign essential tremor. This didn’t work and did nothing except make me very tired and out of it. He did find during some tests that the Lipitor I was taking had done some severe muscle damage and we stopped that, but once my CPK levels were back to normal the tremors and outright fatigue remained.

I eventually saw a local neurologist who diagnosed me immediately with focal dystonia because I played the piano for about one hour per day. He did some quick tests and handed me a brochure about dystonia all in about 12 minutes that we met. I saw him again and he had me go for some other tests which showed other neurological signs other than just dystonia, but he insisted that’s all it was and insisted I go to

his

Botox clinic for shots. I balked and we became enemies! Something inside said NO! to the Botox shots. He reluctantly gave me some muscle relaxants, but that didn’t help either much at all. I still had spasms, tremors, and very sore biceps among other things going on.

A fellow music friend of mine, a primary care doctor, noticed my gait and me holding my bicep muscles because of the pain in my shoulders and arms. He told me right out that this wasn’t dystonia, and I should ask for further tests and seek another opinion. I saw my neurologist again and asked him about this. Being enemies by now, he was on the defense and insisted it was dystonia, and I pushed harder to try something else. He reluctantly gave me Sinemet. It worked 100% off the bat! He didn’t have much of an answer and we went for Mirapex as well and that helped a very tiny bit too.

The Sinemet released my hands which were no longer clenched tightly. My feet uncurled and for the first time in what felt like a lifetime I felt normal again! The aches in my biceps went away as well.

After some mistakes in a report back to my primary care doctor, I was able to switch to my current neurologist at the famous Lahey Clinic.

Throughout this ordeal, I found out the hard way I had to be my own health advocate. I found out that if we don’t speak up when we don’t like something, things can go seriously wrong. As it turned out the first neurologist is no longer in practice!

My current neurologist is definitely more thorough and sent me for further tests to ensure this is what she thought it was and not something else, and she said yes there are some components of dystonia, and it was good I didn’t go for the shots. (The ole gut was right again). I was told that I have other things going on in addition to the Parkinson Disease which kept her from making a firm diagnosis earlier.

I also found out too that we can be our own worst enemies. The internet does not help either, I’m sorry to say this online. The information has gotten much better since the late 2000s, but there’s a lot of scary information out there too that’s incorrect. That scary information can do scary things in our minds.

Being my own worst enemy meant I stopped playing the piano. After about year of being on strike, I found I was the only one in a funk. Nobody else cared or bothered to ask me how I felt. It was then I focused back on my music in earnest.

In 2009 I enrolled at University of Massachusetts at Lowell as a music major after being laid-off from my job during the great recession. I was able to put in the best year of my life as a music major and only wish I could have done this when I was 18 instead of 48. I maintained a 3.89 GPA during that full academic year and so wanted to remain in school for music.

I went back to work after running out of money and ultimately ended retiring on disability in September 2012 due to the increasing symptoms including balance and cognitive issues, stress and inability to keep up with the job.

Today, I try really hard to maintain a stress-free environment and focus on the things I like such as music. I still play the piano nearly daily and belong to a group of pianists and organists who talk music on a near daily basis.

I discovered too that being diagnosed with Parkinson Disease doesn’t mean we have to stop living. Do what you can while you can and enjoy every minute of it.

[Ally]

Hi John, could you please send me an email at alexandra.macgregor(at)bionews.com? Once I hear from you, I’ll send you some more information about how you can participate in the campaign. Thanks!

[John Citron]

Hi Ally,

I sent you an email.

John

[Krukar]

Hi Ally,

Mike here, the best way to get a hold of me would be by my email

[email protected]. My wife has given me permission to share my story. I take a positive, proactive approach in my battle with Parkinson’s. I recognize it is a difficult fight. Blessings, Mike

 

 

 

 

 

[Gauri]

One fine morning I found my neck very stiff , hands were frozen, there was unusual rigidity that I observed. Soon I realised that I was not able to tie shoelace also. People kept asking me what is wrong!?? 3 to 4 months passed by before I visited neurologist. After examining for 10 minutes the neurologist wrote on a piece of paper Gauri Khare age 41, suffering from Parkinson. I felt like an earthquake, it was like blow of a bomb blast!!! I refused to accept it. I carried on my routine and life with these symptoms as it is. Another six months passed by before I saw another neurologist who prescribe the same. I still did not take medicine as I did not want to accept the terms of life. My symptoms worsened. Gait problem, rigidity of muscles tremors were at its peak. Five years before this I was experiencing depression. I used to try and hide at tremor when I used to meet people. Four years passed by. I met a renowned neurologist advised me to undergo trodat scan which detected absence of cells producing dopamine. This made me believe my prior prescriptions. I started with my medication and was very disappointed to understand that I was not able to digested and tolerated it. The whole affair pushed me down into depression. Situation was bad to worse for the initial 5 to 6 years until I met a better neurologist who put me on to better drugs and also advised me physiotherapy. My life took a turn and there was greenery on my path. With physiotherapy and medication I started feeling much much better and was almost feeling like normal person.

Today there is nothing that I cannot do I do painting I sing classical vocal I am a private tution teacher I do daily chorus activities I jog on the treadmill I draw Rangoli of of four feet diameter in the building lobby I drive I lift weights of grocery and everything that a normal person can do.

I have proved that Parkinson is not progressive it is degressive.

[Gauri]

One fine morning I found my neck very stiff , hands were frozen, there was unusual rigidity that I observed. Soon I realised that I was not able to tie shoelace also. People kept asking me what is wrong!?? 3 to 4 months passed by before I visited neurologist. After examining for 10 minutes the neurologist wrote on a piece of paper Gauri Khare age 41, suffering from Parkinson. I felt like an earthquake, it was like blow of a bomb blast!!! I refused to accept it. I carried on my routine and life with these symptoms as it is. Another six months passed by before I saw another neurologist who prescribe the same. I still did not take medicine as I did not want to accept the terms of life. My symptoms worsened. Gait problem, rigidity of muscles tremors were at its peak. Five years before this I was experiencing depression. I used to try and hide at tremor when I used to meet people. Four years passed by. I met a renowned neurologist advised me to undergo trodat scan which detected absence of cells producing dopamine. This made me believe my prior prescriptions. I started with my medication and was very disappointed to understand that I was not able to digested and tolerated it. The whole affair pushed me down into depression. Situation was bad to worse for the initial 5 to 6 years until I met a better neurologist who put me on to better drugs and also advised me physiotherapy. My life took a turn and there was greenery on my path. With physiotherapy and medication I started feeling much much better and was almost feeling like normal person.

Today there is nothing that I cannot do I do painting I sing classical vocal I am a private tution teacher I do daily chorus activities I jog on the treadmill I draw Rangoli of of four feet diameter in the building lobby I drive I lift weights of grocery and everything that a normal person can do.

I have proved that Parkinson is not progressive it is degressive.

[Barbara]

Yes, but not from diagnosis. Now that I am 8 years in, through much reading and observations I have been experiencing what I call “good happenings “.
Barbra

[Gerardo Olivares]

Yes, I am interested.

I was diagnosed with PD in 2010, but going back I started to have symptoms around 2007 but my coworkers and friends noticed something wrong on my body movements like swinging my right arm and shuffling my right foot and I feel like dizziness during the day and every day and one day at work I had a episode of vertigo and I was taken to the hospital in a ambulance because I didn’t know what it was days after I had panic attacks and I tough that I was having a heart attack but it wasn’t. I was getting scared because my heart was running so fast and I was confused until the doctor at Er told me how was a heart attack. I was diagnosed because after finishing my yard work my right hand shakes and I couldn’t stopped so after a few tests from my primary doctor he sent me to the neurologist and I couldn’t believed it I was 48 and I tough that only older people get it (PD) I went into depression for 2 years, no friends, no fun just work home and home work and sleep now understand that was my worst mistake ever. I went to Mexico looking for better opinions but 4 doctors different cities same diagnosis.

June 2014 I went to Parkinson’s event and I learned that I have to live  trying to be the same. I’m trying but I don’t like people looking at me like feeling pity or pass by and I  can feel that they are looking at me I stopped working 3 years ago because the medication made me feel sleepy and I couldn’t drive safely and my job mostly was driving doing deliveries and I fall sleep driving a couple times and I decided to stopped and not take the risks .

I have a new doctor and next week I will have my 2nd visit but I feel different because she sent me to physical therapy and speech therapy and I hope she will modify my dose. Cause I feel that I don’t taking enough meds cause mostly in the morning I having freezing episodes and sleep problems but we’ll see

thanks in advance and I know that I’m not alone

[Ally]

Hi Gerardo, could you please send me an email at alexandra.macgregor(at)bionews.com? Once I hear from you, I’ll send you some more information about how you can participate in the campaign. Thanks!

[Tommy Stringer]

Ally

I retired this year as a representative in the South Carolina House of Representatives after 14 years of service. I was diagnosed 16 years ago with young-onset PD at the age of 39. I have openly described my experience and progression with PD on my blog over the years. If you would like for me to compile my experiences into a helpful format, please let me know.

Thanks,

Tommy

 

 

[Ally]

Hi Tommy, could you please send me an email at alexandra.macgregor(at)bionews.com and I can follow-up with you with more information?

[Ally]

Hi Tommy, could you please send me an email at alexandra.macgregor(at)bionews.com? Once I hear from you, I’ll send you some more information about how you can participate in the campaign. Thanks!

[Michelle Lane]

Yes, I am interested in Sharing my story.  I was diagnosed 22 years ago at the age of 32 after two years of symptoms.

[Ally]

Hi Michelle, could you please send me an email at alexandra.macgregor(at)bionews.com and I can follow-up with you with more information?

[STEVEN OPPEN]

diagnosed in 2013, having just received the news in 2011 that my wife had pancreatic cancer. A double whammy – my love of 48 years lost her battle in 2017. I was determined to fight the good fight, albeit as a patient and caregiver rolled into one. Met my “second love” in 2018, we enjoyed each other’s company for 3 years before she decided that she wanted to go it alone. Now I’m a single patient/caregiver again, and I hate it! I’m experiencing severely reduced on periods – the only Rytary dosage that helps is the 6am eye opener.
I read a great deal about PD, and I was enthused about the future of DBS. Every other product in the current market is a “me too” compound with bad side effects (a bit simplistic, I know, but not too far from the truth). Leaders of the U of Florida program have bet their careers on DBS, and the science is impressive, despite our not understanding why DBS works. I’ve gotten the first lead placed in my skull, and the second one goes in on 3/29. The third surgery is on 5/6, so I will soon know whether enduring the risks of infection and loss of cognitive skills was worth it. I’m betting my life on it.

Be well and good luck to all of you.

[David Blacker]

I’d be happy to share my story, in fact I feel almost obliged to do this, as a neurologist who has PD

David Blacker

Perth

Western Australia

[Laura]

Hi Ally,

Yes, please reach out to me. I would love to share my story with Parkinson’s. I am a mom of 6 and was diagnosed 4 years ago at the age of 51. I had noticed symptoms approximately 6-9 months prior, but at the time, I had no idea that I had PD. It all began with micrographia (tiny cramped handwriting). I’m very artistic, love to write and always had big loopy handwriting. When my handwriting became tiny and it physically hurt to write, I knew something was off, but I couldn’t figure out what. Months later I was diagnosed with Parkinson’s disease. Initially, it scared me and I was almost in disbelief, but pretty much from the beginning, I decided to embrace it, to adapt with it and to make the best of it. I wanted to approach my Parkinson’s with positivity and make peace with it. While there are challenges (especially with walking, stiff muscles and occasional tremors) and losses that I can see and feel as my Parkinson’s subtly progresses and meds are increased, I have grown exponentially in many other ways over the last few years. Right now, I feel inspired. I follow my heart & I tell people what they mean to me. I put forth my best effort and keep on going because there is so much more I have yet to accomplish. For now, PD and I are trying to be friends, to coexist. I am blessed with amazing gains, insight & inspiration every day and I am so grateful for every one! Since my diagnosis, I have started a blog, created graphic art designs and cut files that I sell on Etsy, and about a year and a half ago, I taught myself how to dot paint Mandalas, something I was afraid to try because of my Parkinson’s. I am so glad I had the courage to try, because this has become a very meditative & therapeutic art form for me and I have created a bunch of designs that I am especially proud of (see picture). I will keep embracing this life and trying to do my best for as long as I am able to. I believe in ways, that PD has helped me to face my fears and live in every moment.

[Ally]

Hi all, thanks so much for replying! I’ve sent everyone either a private message via the forums, or an email if you provided one. I look forward to hearing from you!

If anyone else would like to contribute, please shoot me a private message or send me an email at alexandra.macgregor (at) gmail (dot) com — all perspectives are welcome, including spouses/caregivers, physicians/medical care team members, other family members, friends, etc.!

[Marjorie Weiss]

I am a caregiver to my husband who has had PD For at least 20 years (He is now 69.) He had Deep Brain Stimulation surgery in 2007 and 2009 and is still benefiting greatly from it. Marjorie

Feel free to message me.

[Debbie Lucchesi]

Yes I am interested … diagnosed 8 years ago.  Luckily I am a personal trainer and cycle instructor so exercise has been so helpful.  I am very involved with the Parkinson’s Foundation.  Would be happy to share my story

[Corrie Trattner]

Hi Ally,

I am interested in sharing my story as a care-partner and as an occupational therapist (although I wasn’t his OTR/L) for my husband who died from Parkinson’s on March 6, 2021.   He also had other complications including Bipolar Disease and later dementia, vascular wounds, dementia, and visual problems.  He was officially diagnosed for 5 years, but I believe from my readings, etc. that he had it for at least 5-6 years prior to his diagnosis and maybe even much before that.  He definitly showed a lot of the non-motor symptoms, which apparently contradicted the treatment between the medical and psychiatric worlds.  Dealing with the medical system was extremely challenging in addition to all of the challenges Parkinson’s caused.  In addition, I found emotional support for care-partners to be sorely lacking.  Thankfully, I was able to participate in some very good support groups, but things became even more difficult once COVID started.

Sparing you from writing a “book” on this post, I would love to talk with you about this.  You can message me.

Thanks so much,

Corrie

[Alan M]

Hi Ally:

We humans are funny creatures — in  that we are storied peeps.  Our entire lives can often be viewed as a story.

I feel honoured that anyone would want to read my “story of PD”; truthfully I feel almost obliged to do this, as a therapist who has been recently diagnosed with PD.

Simply advise how we join your que and I’ll cooperate, OK Ally?

From Alan, New Zealand

[Ally]

Hi Alan, we’d love to have you as part of the campaign. Please send me an email at alexandra.macgregor(at)bionews.com and I’ll follow-up with more info. Thanks!