Stories

Nora

Facing Parkinson's

Diagnosed at 50

I knew something was wrong in January 2011. My legs started hurting deep inside my bones, sometimes so badly that I could not sleep. I would shift and turn in bed for hours, trying to get comfortable. Muscles in my legs started tensing up on both sides; sometimes I could see the contractions pass underneath the skin like a wave. I told my then-husband about these worrying symptoms, but we really weren't listening to each other very much by that point in our marriage. As I was worried, I went to my regular doctor, but he was very reassuring and encouraged me to wait and see if it got better. And so I did, for almost a year. But I knew something was wrong.

I have always loved to dance. Sometimes in moving with music I would feel connected to the universe, the warm sinuous waves of music echoing through my body, turning, twirling, connecting. In August of 2011, I noticed that I could not dance as freely as I always had, that some connection between my brain and my muscles was not working, that my balance was off and my movements rigid. I began to feel like I would fall when I danced. I noticed other things too, which in retrospect seem obvious. I had difficulty putting my children's sandwiches into lunch bags. Folding laundry was difficult and didn't make sense to my body or my brain. Going through security at airports was a nightmare, is as I felt like I took too long to do everything. My steps became shorter, slower, and I moved more slowly throughout my days. I became unable to use the computer, and people told me that I looked like I was in pain when I moved, and they were right. As my marriage continued to fall apart, I felt like I too was living in a dream from which I could not escape. What is surprising to me now is that it took so long to get a final diagnosis.

The first neurologist that I saw in the spring of 2012 indicated that my symptoms were very general and did not necessarily indicate a specific type of neurological disease. I saw a second neurologist in the fall of 2012, who thought I might have Parkinson's, but also considered a diagnosis of stiff person syndrome based on positive serum antibodies diagnostic for this condition.  For whatever reason, I was terrified of the possibility of Parkinson's, and thus was initially pleased when another neurologist was insistent that my symptoms were caused by the stress of my divorce and my very busy job. As time went on and my walking deteriorated to the point where it was a major struggle to walk down the hall, the diagnosis of stress seemed less likely and I became more open to getting a firm diagnosis, no matter what it was. At this point, I remember thinking "it is what it is", and I need to find out what it is.

Eventually, I traveled to a clinic that specializes in a team-based approached to diagnosis, and within two days they had made a positive identification of Parkinson's and prescribed medication. I cannot begin to describe the relief that I felt as the medication began to help. For two years I had struggled with Parkinson's symptoms on my own. With the medication, at present, I have regained a great deal of my mobility and experienced significant improvement of my non-motor symptoms as well. I am very new to this journey, and I recognize that this is a progressive disease and that there may be tough times ahead. But having a firm diagnosis and a plan for treatment has been infinitely better than struggling by myself for what felt like a very long time. I am becoming involved in a young onset support group, and have been doing tai chi and other exercise, which give me great comfort. I have been on medical leave these past months, and will return to work in 10 days. I know that this next step may be challenging, as I try to integrate the self-care that I need into my working and living. But in some odd way I wonder if I may end up being a happier person than I used to be, more likely to take care of myself and appreciate the kindness of others and the beauty all around us as I move a little bit more slowly through life.

12 Comments

I was also diagnosed with PD at age 50. Symptoms appeared long before. My family doctor treated me for stress. I struggled through several months of wondering why I moved so slow, why my right arm didn't swing, why I was stiff and wobbly and hurting. The diagnosis was almost a relief. It was better to know than to wonder. Welcome to the second half of life!

Carol Clupny, Feb 10, 2014

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Dear Carol, i know exactly what you mean- i also felt that the diagnosis was a relief. How long has it been since your diagnosis, and are the medications helping?

Nora, Feb 21, 2014

I am an RN and worked 7p-7A. I first noticed in a pilates class that my right leg tremored when I squeezed the pilates ring. Then it became so week I fell running to get my dog. A coworker noticed the continuous tremor in my right leg and told me to get it checked. First neurologist said it was sciatica, the second dignosed me with PD. I need to get more involved in a support group which I feel can help with the terrible anxiety I have . Please help with any suggestions

Holly Seiler, Feb 17, 2014

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dear Holly, i think it can be very hard to feel like we are alone - that was the hardest for me when i was diagnosed. i found reading the stories on this website to be very helpful, as i realized that others had the same feelings and in some cases symptoms. do you know if there are any local support groups where you are?

Nora, Feb 21, 2014

I was diagnosed at the age of 34,however, I knew something wasn't right from the age of 25. I started with the tremor and the slowness. All I wanted was for someone to tell me what was wrong. I now suffer with the memory loss and the muscle stiffness not to mention the freezing. I am now 52 and I have my good days and bad.

Jayne, Feb 28, 2014

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Jayne what medication do you take for your tremor?

Barbara M, May 13, 2014

I was finally diagnosed with PD at the age of 54, after years of trying to find an answer for what was wrong with me. My mother-in-law had PD and as I began to experience symptoms, I remember her telling me about her shoulder stiffness, difficulty with certain tasks like stirring the brownie batter, shuffling when she walked and more, and it finally hit home with me that I probably also had PD. The neurologist confirmed my self diagnosis, and thank goodness for the meds and Neupro patches. Life is much better and I exercise much more and now have good days. I will not let this disease get the best of me.

Vicki, Mar 2, 2014

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I was diagnosed in January 2014. I have difficulty adjusting to the meds. I related to those who are struggling with anxiety. I think it is the unknown that causes us anxiety & fear. I stay in God's Word daily and this has helped me to place my future whatever it may look like in His capable hands.

Sherry, Mar 10, 2014

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I knew for 10 years that something with my body wasn't right. The first neurologist thought it was MS,but not sure. After her retirement, I went to 2 other neurologists who were not sure...even though my leg and hand tremors were quite obvious. My husband of 24 years thought I was making things up as part of my severe depression. He filed for divorce last July. I finally found a terrific doctor who did a DaTscan and I got my confirmed diagnosis in October. I had such an overwhelming sense of relief...just to know that I am not crazy and imagining my symptoms. The worst part for me now is dealing with my overwhelming anxiety and fear of my future. I am a coach in a sport that requires me to be "hands on" with my students. I have had this career for 20 years. Not sure how I will support myself in the future. I am 48. Can anyone tell me if this anxiety is part of the disease, related to depression ( that I have had for 25 years), or meds related?

Julie Binz, Apr 6, 2014

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After reading your story it sounds like a combination of things. You have a lot going on in your life right now. Depression and anxiety are an everyday struggle for people with Parkinson's Disease. The level that you have can have a lot to do with whatever your stressors are. As far as the meds being related, I can only give you this advice. Make sure that the doctor/doctors that you are seeing specialize in Parkinson's Disease and/or movement disorders. Get with a doctor that knows the disease and what meds are best to treat it. Don't give up, as it may take some time to get you regulated with the meds that are best suited for you. Also, don't be afraid to seek help. I know when I was going through losing my job, it was one of the lowest points in my life. Hang in there as long as you possibly can. See if they will let you scale back your workload or take another position. The goal is to have Parkinson's, and don't let Parkinson's have you. It may sound cheesy, but I have found that to be very true. In a closing note, make sure that your "Care Team" knows what each other is doing. This way you don't have a meds combo that can mess up your brain chemistry or even prove fatal. Hang in there. There's a whole lot of people out here who care about you and support our cause. Who knows, maybe one day we will have a cure.

Justin, May 16, 2014

DEAR JULIE! WHAT MEDICATION DO YOU HAVE? mAY BE YOU HAVE TO CHANGE IT TO ANOTHER ONE ? YOU HAVE TO ASK YOUR DOCTOR TO CHANGE YOUR DRUG
dEPRESSION IS A PART OF DESEASE, BUT THERE ARE SOME DRUGS WHICH HELP TO FIGHT DEPRESSION
HAVE A GOOD DAY AND TRY NOT TO WORRY - OPTIMISM IS A BASE OF YOUR GOOD FEELING! SORRY FOR MY ENGLISH - I AM FROM RUSSIA AND I HAVE DIAGNOSIS 4 YEARS, I AM 48 NOW

TAMARA, May 18, 2014

I am 53 and have recently been diagnosed. My main symptom is my arm tremor that has been getting more prominent. I am a teacher and worry about it becoming more obvious to students and colleagues. I am struggling with medication also. I take Azilect and just started amantadine for the tremor but the amantadine doesn't agree with me, ( headaches and makes me depressed). The azilect on the other hand gives me energy and upbeat but does little for the tremor. Could some of you share your medications for tremor with me. I really don't want to start levo-dopa yet. I think increase anxiety is a natural occurrence after diagnosis. I also have a bad back and wonder if the cortisones shots I had led to this diagnosis. Anyone else get diagnosed after cortisone?

Barbara M, May 13, 2014

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