My symptoms finally had a name

Photo of a woman cross-country skiing (PantherMedia / Dmitriy Shironosov) Beth, 54 years old 

"Being diagnosed with Parkinson's was a relief for me. Finally I could get proper help. And it confirmed that I wasn't imagining things. Lots of people accuse you of that if there's no clear cause of your symptoms." 

About ten years ago my right arm started hurting one day. It felt like very bad muscle ache. But the pain didn't go away. Not even pain relief medication helped. The pain started to gradually spread to the whole right-hand side of my body. I then went to see a doctor.

A long road to diagnosis

But the doctors couldn't help me. They tried different pain-relieving treatments, but none of them worked. I found it very hard to cope with mentally, and nothing helped. For instance, I was sent to an orthopedic rehabilitation center, but was told straight away that with my symptoms I had come to the wrong place. But they treated me anyway. After rehabilitation I was prescribed psychotherapy. That really did me good.

At some stage the pain had spread out so far into my right leg that I could only drag it behind me when walking. It was a permanent, burning pain, like when you really push your body to the max, and it didn't let off at all. The pain felt like I was wearing a corset. The muscles in my torso and in my arms and legs felt constricted. Everything got tighter and I could only walk at a snail's pace.

I couldn't carry on. I read up on my symptoms, suspected it might be Parkinson's and asked my neurologist to do an L-Dopa test. It did make me feel really sick and I had to vomit, but after a few minutes my body felt completely normal again. It felt as if that corset had just fallen off! The pain was gone and it felt simply amazing.

I was then referred to a Parkinson's clinic for treatment. The head doctor there thought the reasons for my pain were more psychological, because pain isn't actually one of the main symptoms of Parkinson's. That was terrible for me. I wasn't willing to accept that and got a second opinion. That neurologist confirmed that I had Parkinson's. After that everything went well. I was prescribed the right medication at the right dose.

The diagnosis came as a relief

In the end it took four years to get a final diagnosis. Being diagnosed with Parkinson's was a relief for me. My symptoms finally had a name. Finally I could get proper help. And it confirmed that I wasn't imagining things. Lots of people accuse you of that if there's no clear cause.

Cause of muscle tension

Lots of Parkinson's patients have this shaking, this tremor. I only have that when I'm really stressed. That made the diagnosis difficult because it's usually a common sign of Parkinson's. Over time I learned what caused this painful tensing up of my muscles: stress, cold and too little sleep.

Medication has to be constantly adjusted

The medications and the doses have to be constantly adjusted. It's a constant trial and error. You have to be in regular contact with your doctor. I have to see how I'm doing every day and adjust the medication a little myself all the time. No doctor can do that for me.

It's important for me to stay active

I go to physiotherapy once a week. And I've been going to psychotherapy once a month for a few years now. That really helps.

Parkinson's patients often withdraw from their social life. I did too. I didn't want to go anywhere anymore. That's when it's really important to have people who keep dragging you back out. I'm actually a very sociable person, but I've avoided big gatherings since getting ill. They make me feel unsure of myself. But when I do force myself to meet up with friends, I'm happy and enjoy it.

I try to be as independent as possible. We talk to each other a lot in my family. If I'm not feeling good then I just tell them and everyone knows about it. Music then helps me. Preferably very loud. Sometimes I dance to it. I also like to go out and do some gardening. It's hard work but I enjoy it and it gives me something to do the whole year round.

My husband and I sometimes play those motion-controlled computer games. They're great fun, you have to move about and it helps to improve your balance. I also swim a lot. In winter we like to go cross-country skiing, I really enjoy that.

And I do volunteer work. I'm also involved in self-help groups. It's really good. I like to talk to other people with the illness. They know what I'm talking about, of course.

I get help

I've had a home help for a few years now. We're lucky that we can afford that. I can no longer move my arms up and down and bend and stretch them properly. Having this help is a great relief.

I also had a walker when I was in the hospital. The physiotherapist there showed me how to use it, and walking was much easier in the hospital when I was using it. I see it as an aid and not a stigma, like others might.

I think it's important to keep your chin up after the diagnosis, stay active, go out and keep up your social contacts. Having something to do helps me. My life isn't over just because I have this illness - it's just different, and that gives me the opportunity to discover new things.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.