First time undergoing complex treatment for Parkinson's disease at a specialized clinic (Part 1)

The PD-specialist clinic in Beelitz offers a comprehensive treatment program ncluding archery and boxing.

If you're spending your first inpatient stay at a specialized clinic with a diagnosis of Parkinson's Disease (PD) or idiopathic Parkinson's syndrome, there are a few things you should know and be prepared for beforehand. That's been my experience, at least.

An annual inpatient complex treatment stay

In Germany, health insurance companies cover the costs of a hospital stay in one of the numerous facilities in most cases, provided that complex treatment is being carried out. This requires a referral from your family doctor or neurologist and, in some cases, confirmation of coverage from your health insurance company. However, these are only formal hurdles that are easy to overcome, as such hospital stays are generally not denied.

Components of the comprehensive treatment include, in addition to the medical adjustment of medication consisting of so-called agonists and levodopa (L-Dopa), various physiotherapy, occupational therapy, speech therapy, and – if necessary and desired – psychotherapy. The program is complemented by counseling services from the "Social Services." The appropriately trained professionals provide individualized advice, for example, on the possibilities of applying for a severely disabled person's ID card or financial benefits from long-term care insurance. They also provide information on protection against dismissal in the event of job loss and legal protection in lawsuits and proceedings before the relevant labor courts.

Extensive help and useful information for people with PD and their families

Parkinson's patients with a recent diagnosis and their families can benefit from the comprehensive information available about the various support options, because: illness is costly. It's therefore fortunate that in Germany there is an existing, albeit not explicitly enshrined, right to such a stay for 10 to 14 days once a year. This is also a good thing, because adjusting Parkinson's medication is usually easier in a setting other than the usual home environment. PD-Patients have a say in the selection of the specific specialized clinic. In many cases, these clinics are fully booked. This can lead to waiting times of several weeks or even months. Therefore, such clinic stays should be planned and applied for as early as possible.

Traveling to the North Sea or Baltic Sea with Parkinson's disease 

Since my initial diagnosis of Parkinson's Disease (PD) in the spring of 2013, I have had approximately ten inpatient hospital stays. These included stays at clinics on Helgoland and Timmendorfer Strand, where the proximity to the North Sea and Baltic Sea, respectively, was a significant factor. I also have fond memories of my stays at the specialized clinics in Beelitz (near Potsdam) and Kassel.

In addition to inpatient hospital stays, the Charité hospital in Berlin, for example, offers outpatient, partial-inpatient complex therapies lasting two or three weeks, daily from 9:00 a.m. to 4:00 p.m. The advantage is that, despite the adjustment of medication by neurologists and the other treatments, patients can return to their familiar surroundings at home in the evenings.

Overall, I had many positive experiences during my stays at specialized Parkinson's clinics and made several acquaintances, some of whom I still know today. So far, so good.

However, I should warn everyone with Parkinson's disease that a stay in a specialized clinic can also lead to negative impressions and experiences that I myself would have preferred to avoid or be better prepared for. I will report on this in a second part.