One of the most discussed topics in the relevant Parkinson's forums and communities is the so-called multimodal complex therapy. How does one of these work? Therapy Who is responsible for paying the costs, who writes the instruction, how long does it take, is it suitable for me, which clinic is near me, which clinic is the best? Questions about questions.
My therapy took place in the Passau Wolf Specialist Clinic in Bad Gögging and I hope that my diary gives you a profound insight into the everyday life of such a treatment
Photo: Passauer Wolf, berliberlinski
The first week
Prologue - a plea for a very special therapy
It was only 2 years ago that I was discovered by chance, so-called idiopathic Parkinson's syndrome, and a lot has changed in my life since then. Although my motoric restrictions are still very moderate - that means uncomfortable but bearable - I am plagued by mood swings, balance disorders, constipation (sounds nicer than constipation), memory and concentration deficits and extreme susceptibility to stress. I am particularly saddened by my language problems, which are noticeable in slurred pronunciation, a rough voice that often tilts in pitch, and a slowdown in my speech. An eloquent, eloquent chatterbox has turned into a taciturn listener in just 2 years. Although I don't want to rule out the fact that those close to me will certainly appreciate my verbal restraint 😉.
Speech and swallowing are obviously related, so swallowing and coughing up violently are the order of the day. Rather harmless at home, it triggers collective masking in restaurants in Corona times.
I see my neurologist, whom I really appreciate, every 3-4 months on average. If the disease progresses very slowly, that should be enough. But the crux of the matter is that there is no gold standard in treatment. The degeneration of the nerve cells in the so-called substantia nigra in the deep brain area cannot be stopped or slowed down. But one can very well do something about the symptoms. Then it's good !? Not at all, because every patient has their own Parkinson's disease, and everyone has their own special bouquet of symptoms.
On the other hand, there are now a multitude of therapeutic options: Countless drugs, some with different strategies of action, with interactions with one another that cannot be predicted. With side effects that forbid reading the package insert - they usually read worse than the symptoms you are currently experiencing.
There are also physiotherapy, occupational therapy, speech therapy, neuropsychology, hiking, cycling, ping-pong, massages, LSVT Loud, LSVT Big, Thai Chi, Deep brain stimulation ... The series can be expanded as desired.
The neurologist is now looking for the right point in a 5-dimensional space made up of medication, exercise therapy, surgery, the right time and the right amount.
At this point I would like to remind you that Einstein was already struggling with 3-dimensional space and had to bend it in order for his formulas to work.
Back to the neurologist, how does he solve the problem?
Case 1:
He has a patient in front of him who is intellectually still able to understand the problem and to participate in the solution. Then his doctor will put together a small drug cocktail within which he (the patient) should try and error to find out the best combination as part of self-experiments. He will recommend him to exercise regularly and say goodbye with the words: “My secretary will arrange a new appointment with you in 3 months, then we'll see. At least that's how it was with me and I wasn't dissatisfied with it. If I have changed my experimental set-up, a short email to my neurologist is sufficient and he will either confirm or deny that my plan made sense.
You can live with that, right?
Case 2
But what if the patient is intellectually overwhelmed with this procedure and the next appointment will not take place for 3 months? The effect could be absent or worse, the symptoms even worsen.
The numerous calls for help in the relevant Facebook groups paint a terrifying picture of the needs of patients and their relatives in such situations
It is obvious that in such a complex environment the quality of the treating neurologist is essential.
Hence my appeal, visit one of the numerous self-help groups, become a member of the German Parkinson's Association and make use of the experience of your new fellow sufferers or even friends.
... and let yourself be prescribed a multimodal complex therapy!
Before I now reveal the three weeks of my therapy in an epic manner, the following question inevitably arises: What on earth is a multimodal complex therapy?
With a complex therapy (I will leave out the "multimodal" from now on), in addition to comprehensive medical care, intensive therapies usually take place over a period of two to three weeks. The prerequisite is the need for an inpatient hospital stay, the need for diagnostic measures and the inpatient step-by-step optimization of drug therapy. All of this in combination with other therapeutic measures such as speech therapy, occupational therapy, physiotherapy and psychological care. Parkinson's complex treatment should be carried out if the quality of life remains limited despite extensive outpatient measures and if an optimal medication setting is not possible on an outpatient basis.
Interjection: It has now been recognized that complex therapy can also be useful, especially in the early stages. So you don't have to wait until the child has fallen into the well.
In a multidisciplinary team consisting of doctors, specialized nursing staff, Parkinson's nurses and therapists (physiotherapy, occupational therapy, speech therapy, neuropsychology), individual therapy goals and a treatment plan are worked out together with the patient, which should lead to an improvement in quality of life and independence The training takes place in daily specialized individual and group therapies.
The most important applications at a glance
occupational Therapy
Photo: Passauer Wolf, berliberlinski
A large area affected by Parkinson's disease is loss of personal and professional roles, jobs, home care, and recreational activities. This is where occupational therapy comes in.
Together with the patient, the areas of “activities of daily living” (washing, dressing, transferring, shopping, etc.), “productivity” (work, volunteer work, Essen preparing) and “leisure” (social leisure, sports, hobbies). The patient formulates what he can no longer do, e.g. E.g. washing/dressing, vacuuming or writing. He then assesses how important it is to him to be able to do this activity again. Based on these results, the priorities for treatment are determined.
This approach makes the therapy transparent for the patient and also promotes independent action. Through the jointly developed objectives, the patients understand what the therapy exercises are for and have their objectives clearly in mind the whole time during their stay. So e.g. B. With a patient who has problems getting dressed, the action "dressing" is analyzed and adaptations (e.g. a different technique for putting socks on) are worked out. The aim is to independently perform an activity that is meaningful to the patient.
For example, if the patients B. have problems with writing, the "Allensbach fine motor skills test" is carried out. The type and severity of the impairment can be determined in this way. Occupational therapists then adjust the therapy to specifically practice the impaired components that are important for writing correctly. This enables the patient to carry out the action that is meaningful to him again. In addition, the patients receive a fine-motor self-training program to carry out independently.
In the context of group therapy, among other things, “rhythmic acoustic stimulation” (RAS) is carried out. RAS is movement training with acoustic stimulation using music, clapping or the click of a metronome. The RAS approach is a "cueing" strategy. The term 2Cueing comes from English and describes a continuous acoustic or visual stimulation for an activity. For this purpose, a rhythm is learned within the therapy, which should contribute to the compensation of movement disorders. In addition, the occupational therapists practice the so-called “finger Tai Chi” with the patients. The repetitive exercises serve, among other things, to improve awareness and motor skills and at the same time contribute to relaxation.
Physical therapy
Photo: Passauer Wolf, berliberlinski
Parkinson's disease changes motor skills. This is particularly noticeable in the gait pattern. The small steps that occur and the leaning forward walking are common causes of falls. In order to maintain or improve the patient's mobility, early physiotherapeutic treatment, e.g. B. gait school and fall prophylaxis are of great importance. The use of various aids such as B. Rollators is also beneficial here.
In physiotherapy, new scientific findings are taken into account in the individual therapies, including training with large, sweeping movements. Another focus is the training of gait security and balance in order to reduce the tendency to fall. is aligned.
Speech therapy
Photo: Passauer Wolf, berliberlinski
In the majority of Parkinson's patients, the speed and volume of speech are changed as a result of the disease. Parkinson's patients often speak quietly, monotonously and slowly, sometimes too quickly, so that the articulation becomes imprecise and difficult to understand. Through intensive speech therapy, improvements can be achieved as part of an inpatient stay. Among other things, the aim is to improve speech intelligibility by increasing the speech volume.
In the course of Parkinson's disease, many sufferers are confronted with impaired swallowing. Typical swallowing disorders include decreased swallowing frequency and difficulty controlling your own saliva flow. Due to the reduced mobility of the tongue, the decrease in the power of movement in the throat and increasing difficulties in coordinating all the swallowing muscles involved, difficulties can arise during oral feeding. Diagnostic imaging methods such as x-rays and endoscopic examinations enable individual treatments as part of functional dysphagia therapy, which is specifically geared to the needs of Parkinson's patients.
Neuropsychology
Passauer Wolf, photo Mayer Neustadt
A Parkinson's complex treatment always includes an assessment of the cognitive and emotional state of the individual by means of a neuropsychological examination. Depending on the results, a treatment plan to stabilize and improve cognitive functions and / or to support disease processing may be drawn up. The treatment then takes place as individual or group therapy.
1st day Tuesday - it starts
It is early on a Tuesday in August, outside it is a pleasant 20 degrees, just right for the short journey by car to Bad Gögging. 3 weeks are planned and there are so many suitcases lying around that you could think that I would move out.
Two years ago I was diagnosed with the so-called idiopathic Parkinson's syndrome, and since then nothing has been the same as it used to be. I know that the disease cannot be stopped and that it is progressing at an unpredictable rate.
But you can slow down the degeneration, minimize the symptoms and keep a good deal of quality of life for many years.
I expect a big step in this direction with a 3-week so-called complex therapy in a specialized clinic.
So now it's off to Bad Gögging, just under 100 km from my beloved Schwabing. Schwabing? Isn't there also a renowned Parkinson's specialist clinic there? Yes, there are and I know them very well from many information events. But an outpatient stay was out of the question for me, I consider it crucial for the therapy success to get out of my daily routine - that would certainly not have been possible in a clinic around the corner (I know myself).
But where else is it going? I obtained the list of certified or specialized specialist clinics from the dPV - you can also find them on my blog https://parkinson-journal.de/parkinson-kliniken and clicked me through their websites.
Coincidentally, a lecture by PD Dr. Wächter, the chief physician of the neurological specialist clinic in Bad Gögging.
A convincing lecture, a nice conversation at the end and my decision was clear. But I didn't want to keep the appointment until after my second vaccination.
Incidentally, the introduction to the clinic was very easy. Since it is neither a rehabilitation nor a spa stay, all that is required is a hospitalization by the family doctor or neurologist. Depending on the severity of the disease, the health insurance company even pays for it twice a year.
And now I'm sitting in the car next to my beloved wife, whom I will only see very rarely in the next three weeks due to corona, among other things. Are you now having difficulty swallowing or just a loo in your throat?
She is not allowed in and so there is only a short farewell and I am suddenly alone with my 2 large suitcases in the huge atrium of the entrance reception. One more look back at the closing sliding door and that's it - I feel like Jonas in the mouth of the whale.
Photo: (Passauer Wolf, berliberlinski)
The atrium is very tasteful and impressive. But as empty as it is today thanks to Corona, I feel a little lost
The nice lady at the reception shows me the way to my ward, where I am already expected. There is hustle and bustle in the corridors of my ward. Most of my roommates need the support of a rollator and are badly affected by the disease. I'm almost embarrassed to be so much healthier, but then I say to myself: Don't worry, life is fair, because I will get that far (if another disease doesn't get me there by then). You will see - for the time being I am not interested in my end, just the way there and it should be damn long enough and above all without infirmity. My stay in Bad Gögging is the first step on this path.
Hurray, I got a double room that is only occupied by me. Brilliant. When I took out my private supplementary insurance for treatment by the head doctor and two-bed rooms, I must have been greedy and I saved the small surcharge for the single room, now the DKV no longer allows an upgrade.
First there are numerous formalities to be done, the obligatory rapid test is due (despite the vaccination) and I have to stow the contents of my huge suitcase in the closet. This is a challenge, because my placement technique is not folded up and neatly stacked, but stuffed in 😉 Somebody keeps coming in and giving me some plan or object: the therapy plan, the meal plan, the escape routes, the symptom plan, the house newspaper, the masks. Didn't I mention on the admission sheet that my short-term memory can be forgotten? I'll get it right. Somehow.
The senior doctor comes to greet me and has a very detailed conversation with me, which will ultimately be the basis for the admission diagnosis. I ask for your understanding that, in order to protect my privacy, I am not listing my complete diagnosis. A little bit of everything, one more and the other less pronounced, should suffice as a description. I have to say, it was a very pleasant, empathetic and, last but not least, imparting a high level of expertise. At least now I know that I'm in the right place.
Since I am tormented by noticeable fluctuations in effect, I will be given a "Rotigotine" plaster as a first step in addition to my previous medication.
Rotigotine is a non-ergoline dopamine agonist that is continuously released from the patch for 24 hours and absorbed through the skin. The result is a constant plasma level of the active ingredient and thus permanent receptor stimulation. Dopamine agonists imitate the function of dopamine in the brain by docking onto its receptors.
Furthermore, I also receive a clonazepam in the evening against my REM sleep disorders, as if there were nightmares, talking in my sleep and lashing out. By the way, this is a symptom that I've been lugging around with me for at least 15 years. I remember a long train ride on the ICE, where I cleared an entire table in deep sleep.
And this is what my medication plan looks like today:
| 6.30 | 1,5 levodopa |
| 7.00 |
1 xadago, Rotigotine-Plaster (currently 2 mg, increase to 6 mg) |
| 11.00 | 1 levodopa |
| 15.00 | 1 levodopa |
| 19.00 | 1 levodopa 1 Atorvastatdin (Stettin because of the coronary arteries) 1 Marcumar because of the risk of thrombosis |
| 22:00 |
1 Madopar depot |
Over the rest of the day, there were further discussions and anamnesis on the subject of speech therapy, physiotherapy and a meeting in the so-called welcome group, in which the whole context was explained again.
In the meantime, chief physician Dr. Guard stopped by and took about half an hour to explain his view of my symptoms and treatment approaches to me. I was amazed at how detailed he was about me at this point.
Last but never least: What was there to eat?
Noon -
- Salmon fillet Doria in vegetable sauce with broccoli and potatoes
or - Whole wheat pasta with pumpkin bolognese and grated parmesan.
in the evening
- Spinach lasagne, sausage selection and various breads and side dishes
Classic large canteen food, but nothing to complain about.
I take another walk (5.000 steps) and let the first day end with satisfaction. My large LED TV in my bunker helps me fall asleep.
2nd day Wednesday - from now on I live according to the schedule
At 5 p.m. In the morning the night nurse wakes me up and gives me a suppository against my constipation. After that, I spend 30 minutes holding back the effects.
7:30 am blood collection
A miracle - while the blood collection often ends in a prick fiasco because of my thin veins, the nurse succeeds in filling the tube on the first attempt. I am impressed.
My values are ok, including the Quick value, which I have to measure regularly because of my blood thinning. But obviously I have a vitamin D deficiency, which from now on should be countered with 20.000 units once a week.
9.00 time for rounds
The whole team of doctors and therapists comes in and the next steps in therapy are explained to me in great detail. Obviously I am undersupplied with medication, so my previously pure levodopa therapy is supplemented by a rotigotine neuroplastic. The dose should be increased from 2 mg to 2 mg every 6 days.
Rotigotine is a dopamine agonist and releases the active ingredient evenly throughout the day. This should fix the notorious fluctuations in effect and last but not least protect the stomach. As I feared, the adhesive causes the skin to itch, but it is tolerable and I can live with that.
10.00 a.m. tai chi
I've been in a Tai Chi group in Munich for over a year and I also do my exercises at home every day. The group, which is tailored to beginners, is of little use to me. Fortunately, there are plenty of alternatives, I will probably prefer the weight room or go swimming.
A small plea for Tai Chi: The exercises, which are quite easy to learn, are a mixture of stretching and balance exercises, breathing technique and relaxation. Every morning 20 minutes after breakfast and the start of the day is much easier for me.
10.30 ECG
no abnormalities
11:00 Physiotherapy
A wonderfully soothing massage for my oh so troubled back.
12.00 noon lunch
Breaded turkey schnitzel with potato and cucumber salad is on the agenda. I couldn't have done better. There is also a vegetarian alternative every day, but my remaining life will probably not be enough to get used to it
14.00 p.m. occupational therapy
I train the fine motor skills of my fingers and am surprised how difficult individual exercises are for me. For example: Take 5 small cones, 2 light brown and three dark brown ones, in your hand and place them alternately in color on the table with the same hand. Right (my good side) a simple exercise. Quite different on the left - my head knows exactly what I want, but my fingers don't have the slightest desire to subordinate themselves. How much longer will I be able to button my shirt myself? It remains exciting.
14:30 p.m. Neuropsychology
The neuropsychologists test mental performance - memory, concentration, thinking skills, reaction speed ...
Do I even want to know? Definitely no, but it doesn't help - you can only take countermeasures if you know where the wind is coming from.
Now a piece of cake in the cafeteria and a walk through the town, then I've done my workload for today.
3rd day Thursday - routine is slowly returning
It happened as it had to - no more single room, I got a roommate. A nice Russian, around my age, with unfortunately only very limited knowledge of German. I only understand half of it - but that may also be due to the fact that I don't like wearing my hearing aid 😉
But nothing is so bad that it is not good for something. Since he hardly understands German, I can choose the TV program.
In addition to the therapies I mentioned yesterday, the day today brings me 2 new challenges. Robot gait training and Nordic walking
Robot gait training? I'm already walking like a robot!
Photo: Passauer Wolf, berliberlinski
Don't walk like a robot, of course, but walk with you Support of a robot go.
The Lyra gait trainer can be used in all phases of rehabilitation. The sensors record the patient's stance and step posture and thus help analyze unsteady gait and incorrect posture.
Once again I overestimated myself immensely and believed I could easily manage 30 minutes. Puff cake - after 10 minutes I was happy when it was over.
Nordic walking is nothing new for me now, but while I walk alone in the park at home, it happens here in the group and is visibly more fun for everyone.
Occupational therapy showed me my limits again. I already noticed it while playing the guitar, my fine motor skills in my left hand suffered badly. This becomes particularly clear when I have to set up 5 small cones on the table with just one hand and sorted by color. But these and many similar exercises help to relearn the lost processes.
By the way, at lunchtime there was veal goulash with vegetables and spaetzle - I liked it.
In the evening there was regional cuisine, which is a euphemism for Leberkäs, mustard and pretzels in Bavaria. Who likes it….
Oh yes, the food is in a nice dining room (the hall would be exaggerated) and if you want, you can have the food brought to your room. It is really touching how the ladies in the cafeteria look after the patients - many of them have a hard time eating and no effort is too much for them.
I take another walk to explore the area, turn on the TV and sleep soundly until 7.00:XNUMX in the morning.
4th day Friday - lucky
Photo: Passauer Wolf, Photo Mayer-Neustadt
A single room has become available and so that I don't disturb my Russian bed neighbors with my nightly tirades, I can move into it today. A nice room with a single bed, a large balcony on the sunny side and at a really fair price. I am happy.
The day begins with a detailed visit and we discuss how to proceed. Essentially, it is about the combination of the individual medication alternatives. Which work, which have side effects, which are still missing, where do you have to increase, and where do you reduce the amount.
Speech therapy is announced again at 09:30.
We start with the first articulation exercises and I learn to train my vocal cords.
What my neighbors in Munich will say when they hear my loud Ohs, Ahs and Ihs. But they have to go through there - so do I.
I already had a 4-week LSVT loud therapy last spring, which helped me a lot. The LSVT LOUD training primarily serves to strengthen the voice and thus to permanently increase the speech volume in everyday life. In the past, it has proven to be very effective and sustainable in terms of a quick and noticeable improvement in vocal ability and thus intelligibility.
In this context, an interview with speech therapist Diana Roos that I conducted on the subject of video therapy should be very interesting.
At 11.00 am the neuropsychologist beats my mind, the tests show significant losses. Am I getting demented or just forgetful? Do I have concentration problems or am I just tired? The questions are already on the table and they occupy me all day. We will see (aha, English still works - it can't be that bad 😉)
Today there was pollack fillet in mustard sauce with sugar snap peas and herb potatoes. It's not my thing, so I switched to vegetarian - Kaiserschmarrn with apple sauce. Vegetarian can even taste good. 😂
13.00 p.m., off to the weight room for medical training. This is where I know my way around, here are the machines that are usually found in every gym. The supervisors are very attentive, give tips and ensure that the individual exercises are carried out correctly.
In physiotherapy today, balance exercises are on the program. This is one of my biggest construction sites, I have managed not to fall so far, but it won't go well for ages. Looking up or down, moving your head quickly to the right or left, getting up too quickly, suddenly having to stop, standing for a long time - all occasions when my sense of balance fails - massive training is the order of the day, tablets don't help at all.
Now my evening round and a Kaiserschmarrn and I fall dead tired into my bed.
5th day Saturday - laze around
Today is a break from therapy, I read, watch TV, explore the village, eat ice cream and pass the time on my notebook. But something is wrong with me. I feel dizzy, have balance problems, hear voices and have no sense of time at all. I guess the side effects of the new drugs and decide to just accept that. The next visit is on Monday and then you will see.
The highlight of the day: beef goulash with vegetables and noodles. It doesn't always have to be caviar.
Day 6, Sunday - first improvements
The voices are gone, my timing is back to normal, only the dizziness and a slight nausea determine my well-being.
Otherwise, Sunday was the same as Saturday, except that there was roast pork with sauerkraut and potato dumplings. A completely new experience, the combination of roast pork and sauerkraut. If you like it - gladly. In any case, I am not one of them.
My clonazepam did not miss its effect and I fell asleep soundly at the "crime scene".
The orientation problems have not shown up today - was probably a side effect of the rotigotine dose increase. Take a look.
The meal was beef with horseradish sauce, emperor vegetables and potatoes. A bit bland, but basst scho.
7th day Monday - the first week done
The week starts well - a full program. Physiotherapy, neuropsychology, massage, red light, cognitive training, phonetic examination
During the neurotraining this time, I was very satisfied with the result. The tests tested were memory of short texts and quick reactions to mental arithmetic.
The phonetic examination was a journey inside me. With a camera through my nose to my throat, don't worry - it didn't hurt. With this recording technique you can observe the swallowing and vocal cord behavior wonderfully. From now on, the result forms the basis for my further speaking and swallowing exercises.
A small downer on the otherwise successful Monday: The senior doctor advised me to do a three-week follow-up rehab. What has to be, has to be. My lovingly cultivated fatalism and my rose-colored glasses will easily cope with the next 3 weeks - I'm sure of that.
The first week is now behind me. My shoulder pain is gone, the medication effects are much flatter, and I haven't had a single REM sleep disorder.
And that has to be said at the end of the first week: The staff here is great. Doctors, therapists, nurses, administrative staff - everyone pulls together, everyone is extremely friendly, helpful and competent. Kudos for a great team.
The day was exhausting and I'm going to bed early. Not a very good idea, because from 4 in the morning I am wide awake again and watch TV. Unbelievable what brainless stuff is being broadcast into the airwaves on the trash stations at night. I take it easy on my nerves, turn off the telly and doze off for another two hours.
The second week
Day 8 Tuesday - my new friend RZJZ
Today I increased the speed in robot training, but left the duration at 10 minutes. My left knee always turns its rounds without asking me, that takes a few more days, if not weeks, if it obeys me, but that's why I'm here.
From a neuropsychological perspective, conversation was the order of the day. It is not easy for me to talk to people I don't know about fears, plans and worries. I myself consider myself more resistant to therapy. But I am open to the topic and will do my best.
And again the walking robot - it's called Lyra, but I call it RZJZ, my brother's initials and mine.
In speech therapy, there is homework for the first time today. I'm glad that I don't see myself doing the individual exercises, especially during the swallowing exercises you pull a grimace. When the speech therapist shows me how, I can't help but smile from time to time.
Now quickly down to my room, the red light lamp is already glowing and spoiling my shoulder muscles.
Today it’s all going well - quickly put on your bathrobe and head to the beautiful swimming pool for the Aqua Fit exercises. How often have I watched the seniors doing water aerobics in the swimming pool and I was sure never to go along with such a rubbish. And now stand or swim in the middle of it and it does me so infinitely good.
In the Ergo we are doing LSVT BIG exercises today. If you are interested, there are numerous videos on the Internet. I am a little handicapped because of a strain in my upper arm and we stop doing the exercises prematurely.
Almost forgotten: Today there was breaded pollack fillet with potato salad. Wasn't really my thing.
Day 9 Wednesday - take a breath
Today it was a little quieter. Physiotherapy failed and I missed the replacement event.
Men's new friend RZJZ once again showed me how to walk properly, but my left leg doesn't seem to trust him. Well, it will be fine.
The senior physician has said goodbye on vacation and discussed the next steps in therapy with me and her representative.
Speech therapy didn't bring anything new today - for the foreseeable future it will mainly be about practicing, practicing, practicing, but that's okay with me.
I met my former roommate (André, the Russian) in the weight room and we did the exercises together. He is plagued by a tremor in his right hand, but most of all he attaches great importance to training his stomach away. So everyone has their goals 😉.
Immediately there will be sandwiches and afterwards I'll walk to Neustadt an Donau, I can do the 5 km.
Day 10 Thursday - fully booked
Eight applications are on my treatment plan today, a tight program.
Got up at 5 a.m. this morning and just couldn't sleep. Have a headache and despite laxatives, my body has not been able to put out the food for the last 4 days. I'll bring it up on the rounds.
My left upper arm joint has been torturing me for a long time, certain sweeping movements are no longer possible. But that is exactly what is at the heart of the LSVT BIG method. We are therefore trying today in occupational therapy to isolate the problem and if necessary. to solve. Circling worked, I have to be patient with the solution.
The rounds this morning were short and sweet, the current medication is being retained and we are monitoring further developments. My rigor (muscle stiffening) in my back has noticeably improved; the price for this seems to be an increasing overmovement in my left foot. Unusual. Is there a connection?
Speech therapy was fun again today. In addition to the usual training of the speaking and swallowing muscles, I had the opportunity to check my vocal improvements in conversation. And lo and behold, the old steamy talker in me has contacted me again. I really hope that I haven't bored my therapist too much with my allotment garden philosophy, but I was very satisfied with my improved sound.
The punishment for my smart-shitting followed immediately, namely through the electrotherapy that followed immediately. As pleasant and helpful as it is - you have to feel your way about the right current strength and then you might have to bite your teeth.
Without a break, I went straight to RZJZ, my robot friend, who didn't want to please me at all today. Ambitious as I am, I had 3 parameters changed - walking time, stride length and walking speed, but that was too much for my left foot, which is troubled today anyway, and I had to stop after 10 minutes. How pleasant were the 30 minutes of Nordic walking after the gait training.
As a reward for all the effort, there was delicious pork strips with vegetables and salad.
A short nap and the memory training continued. I was expecting tips and tricks, concrete help on building donkey bridges or exercises, but they probably already took place on another day, so that I had to deal with theories about structures a little disappointed. Next week is the next appointment and it will certainly be more tangible.
Now in the weight room to earn the delicious chicken fillet with ratatouille tonight, just quickly type the few lines here and be quiet.
Day 11 Friday - light and shadow
The many medications are not without side effects. It took a full 5 days for my constipation to dissolve into pleasure. It will be a bit of my own fault - instead of my morning wholemeal bread at home, I let myself be tempted by the delicious breakfast rolls here. At least this cause can be easily remedied. Let's see if it's enough.
Today I am a little dazed and my gait is similar to that of a sailor in waves. This also affects my sense of balance. See if it gets better when I get to do my morning exercises.
Practice physiotherapy and balance. Don't believe how difficult it can be to walk on a thin rope with one foot in front of the other. I hate it when I can't manage such simple tasks and I have to hold on to a railing.
In occupational therapy we repeated the LSVT BIG training today. It wasn't easy now with my drowsiness today. These exercises are essentially about counteracting the Parkinson's typical diminution of movements. I've actually been doing these exercises almost every day from day one of my diagnosis. There are numerous videos on YouTube - my favorite is this one:
LSVT BIG is also available as outpatient therapy, 45 minutes a day, for 4 weeks, 4 days a week. It shouldn't be a problem to get a prescription from a neurologist. But be careful, at least for me in Bavaria it was the case that the health insurance paid the costs of the therapy at the occupational therapist, but with the physiotherapist I would have had to pay more than 1.300 private for the same service. Well, the ways of the Lord have always been unfathomable 😇.
On to RZJZ, my gang robot friend. His job is still to improve my gait. With every step on the left, I put weight on the outer edge of my foot instead of the sole of the foot and that hurts a lot very quickly. The head knows how to do it right, but the foot doesn't care. RZJZ knows how to do it too, but he can force my foot to do the right thing. That goes well for 10 minutes and then my lodger Parkinson takes the upper hand again.
Looks like there's a giant baby in the playpen. PS That's not me in the photo 😂
Now quickly to the brain training and then it's time for today. I have to skip the back massage, it's just not my day today.
If I feel better in the evening, I'll do a few laps in the beautiful swimming pool.
Almost forgotten, today there was fried plaice with cream sausage and vegetable rice and, as always, a sweet dessert. In the evening there was antipasti. Both very tasty.
Day 12 Saturday - slow motion announced
There are no therapies scheduled at the weekend, but you can use both the swimming pool and the fitness room. I will certainly do that today.
It is particularly pleasant that there is a separate walk to the Limes Therme, so you can go straight from your room in your bathrobe to the bathroom, sauna or vitality area. Perfect. I will clarify on Monday whether the high temperatures are compatible with the NeuPro patch.
I will use the free time today to collect material for my next blog topic. In it I will devote myself to deep brain stimulation - a topic that worries many of us Parkis and is sometimes very controversial.
Day 13, Sunday - time for a résumé
Today is again a therapy-free day, so there is enough time to draw a first résumé.
To get straight to the point: I am completely satisfied and my expectations have been exceeded.
Without going into the individual therapeutic measures - these are hopefully described exhaustively in my diary entries:
- The changed medication was a direct hit. I have to admit, I was very skeptical about changing my medication, as I had the feeling that I was swallowing too much chemistry. and I no longer wanted to take up the struggle with the side effects of new medications. But the fact is that with Parkinson's disease the body simply lacks certain substances and there is nothing in the slightest against adding them to it. To make a slightly limping comparison: Vitamin preparations are the same and I would swallow them carelessly. The medical art now consists of finding out which substances are missing and supplying them to the body so sensitively that it gets used to them without major side effects can. Or if he doesn't want to try alternatives, maybe there will be long-term side effects, you never know and it's not that unlikely - but let's be honest: I live here today and I want it to be mine today goes well. I already know that I will be worse off in 10 years' time. Carpe Diem - Seize the day.
- How have my symptoms changed?
My gait has clearly improved and my back pain, if not completely gone, has become bearable.All in all, I am walking more upright again, the slightly aristocratic bending of my upper body has improved.
My stiffness in the morning has almost completely disappeared.
I haven't had a single REM sleep disorder since I've been here - anyone who has woken up screaming at night, kicking around and trembling with excitement knows what a quantum leap in quality of life this means.
But the most amazing thing is - for years I have been tormented by an inexplicable irritable stomach, which was responsible for frequent nausea, stomach pains and numerous food intolerances. 4 gastroscopy and 3 hospital stays had brought no improvement or at least a comprehensible diagnosis. Since I've been here, these problems have been on a very low level. Every day I try a new delicacy that was previously taboo for me. If the day before yesterday it was brie cheese, yesterday it was a piece of cream cake. Both would have cost me 14 days of my life 2 days ago. But don't overdo it now😂 The improvement is probably caused by a change in the digestive peristalsis caused by the Rotigon patch - you don't know the exact details - but to be honest, I don't care.
- What we still have to work on
The dystonias (excessive mobility in the left foot and leg) have decreased. They now mostly occur while sitting and are completely irregular.My balance and dizziness problems still bother me a lot. Especially when I quickly change the direction of walking or looking, I sway and have to look for support. That still only makes me suitable for everyday use to a limited extent and still makes me shy away from the public.
As in general, the psychological side effects that everyone “Parki” knows are still a burden. As there are: lack of stress resistance, rapid exhaustion, only short-term ability to concentrate, to name just a few.
But I'll be here for a few more weeks and we have a therapy plan for each point.
But now it is enough with illness and reflection, it is Sunday and today at noon my wife, my youngest daughter and my son will visit me and I am really looking forward to seeing them again.
Day 14, Monday - full program
On the hunt for helpful fiber, I hunted 2 whole-grain spelled breads for breakfast. I was surprised how good they tasted, otherwise spelled is not my thing. There was also a fruit yogurt with strawberries. Of course I know that unsweetened natural yogurt is much healthier - but with all my love, I can't get it down.
So strengthened it went to occupational therapy with 30 minutes LSVT BIG. I'm slowly getting to grips with the exercises and I will certainly incorporate them into my daily training program at home.
This was followed by 20 minutes of electrotherapy without a break. Why do I always have to think of the movie "One Flew Over the Cuckoo's Nest" with Jack Nicholson? The movie buffs among my readers will know ;-)
Today is exhausting - 30 minutes of physiotherapy without a break. I played softball with the therapist for half an hour without a break - a great exercise for my reaction speed and my sense of balance.
This was followed by 10 minutes of soothing red light warmth for my tense back and the mental preparation for lunch. The afternoon brought me Nordic walking, speech therapy and a meeting with my friend RZJZ, the gait robot.
After dinner I'll swim for another hour, then into the room, turn on the TV and I'm sure to sleep soundly before the news.
Oh yes, one more remark about my Rotigon Neuro patch. Since yesterday I have been on a daily dose of 6 mg and tolerate it very well. The slight itching when removing the patch in the morning disappears after 30 minutes and that is actually all about the allergic reaction.
The third week
15th day Tuesday - the last week begins
The last week won't bring me much that is new. Now it will be more about deepening the exercises you have learned and maybe putting a piece of wood on the fire.
This morning I will take entacapone for the first time.
Pharma-Wiki writes:
Entacapone is an active ingredient from the group of COMT inhibitors used to treat Parkinson's disease in combination with levodopa and a decarboxylase inhibitor. It is used in patients with fluctuating motor symptoms (end-of-dose). The tablets are given at the same time as the levodopa combination and without food. Entacapone inhibits the peripheral levodopa metabolism and thus leads to a more constant dopaminergic effect in the central nervous system. The most common possible adverse effects include dyskinesia, urine discoloration, and nausea.
I expect two things from this. On the one hand, the possibility of reducing the amount of L-Dopa and, on the other hand, to do something about my constipation. Because while the usual Parkinson's drugs tend to "paralyze" the gastrointestinal tract, entacapone is said to stimulate peristalsis. let's see
Now I'm doing my speech therapy homework and I'm making strange noises 😂 Later I'll continue reading Frank Schätzing's "What if we just save the world"?
Although, for me it doesn't have to be the whole world. I would be like, "What if we just save ourselves from Parkinson's?" already completely sufficient.
Day 16 Wednesday - excessive movements
This morning and unfortunately this noon too, I was pounded by violent overmovement for the first time. Feels like being a fidget. Fortunately, it stopped by itself after about 30 minutes.
It may be that these were side effects from the new drug entacapone - we will have to test that for the next few days.
Otherwise my therapy plan was tightly packed with occupational therapy, physiotherapy, speech therapy, weight room, ergometer, back massage and neuropsychology. With the latter I had to solve tricky logic problems - luckily I cracked all of them. I can't imagine how I would have felt if I hadn't packed this.
My connection to REHA has been approved, so I will move to the neighboring building on Tuesday. I'm excited to see what awaits me there.
I wanted to go swimming tonight, but the battery is dead.
For this I had found the leisure to finally bring the topic "deep brain stimulation" to an end. If you like to read it, you will find it here.
17th day Thursday - first final meetings
The over-movements (dyskinesia) have noticeably decreased compared to yesterday.
In occupational therapy, I first really recognized how much my fine motor skills had already suffered. I think the little video shows it very clearly. But you can work on it and there are more than enough exercises for it.
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In physio we have increased the level of difficulty in balance exercises, and in the gait robot the speed. Everything went well so far.
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Neuropsychology and memory training were more for my head then. Unfortunately, my susceptibility to stress in multi-tasking tasks was confirmed again. I will probably have to do a few more practice units in the subsequent rehabilitation.
Incidentally, today there was venison goulash with Brussels sprouts, spaetzle and cranberries for lunch and salmon hash browns in the evening. You can't complain about that - it was delicious.
Oh yes – and I finally finished and uploaded a new “Parkinson from AZ” video. In today's episode, my comic character Dr. P something about the gastrointestinal tract. Have lots of fun with it.
And here is the video: https://youtu.be/QYLolI62tSY
And now it's off to the swimming pool - I finally treated myself to new swimming trunks. 😂
Day 18, Friday - stress-free
I had tried half a Madopar LT this morning on an empty stomach. There have been more successful ideas in my life. Why do I even do that? Well, the Madopar LT is part of my reliever medication and should - since it works quickly - help me over the mountain in the event of sudden OFF phases. Now at least I know when it is unsuitable for it ;-)
Otherwise it was a quiet day, the approaching weekend was already casting its shadow. Back massage, red light irradiation, water training and a final discussion in neuropsychology determined the daily routine.
I came to read a lot (still Frank Schätzing's book about the impending climate catastrophe) and just ended the day with an hour of evening swimming.
Good night!
19th day Saturday - free time
Last night I forgot to take my REM sleep disorder medication (clonazepam).
My body thanked for this failure with a very restless night.
I was correspondingly tired today. That's why I've already canceled swimming. In the afternoon, despite my tiredness, I spent half an hour in the fitness room - I feel too bad without exercise.
Otherwise, I used the time to continue working on my blog. It's a shame that my concentration drops so quickly, because even simple tasks on the notebook take forever.
To loosen up, I do balance exercises in between - these are particularly difficult for me at the moment.
Then I hopefully will disappear into the realm of dreams. I made a deal with the sandman: if I don't forget clonazepam, I'll be given a quiet night. Well, the Sandman makes it a bit easy for himself, after all, the pills help and not him. 😉
See you in the morning!
20th day Sunday - today wasn't my day
The clonazepam actually let me sleep through until 4 a.m. That was it already. Since then, my stomach has plagued me with a feeling of fullness, tenderness, constant belching and nausea.
I have no idea why - was it perhaps the side effects of entacapone or the side effects of the two scoops of ice cream I ate yesterday - they weren't a taste explosion in any case.
However, when my stomach is on strike, the absorption, transport and / or metabolism of my medication is severely out of sync. Result: shortness of breath, severe tremors, excessive movements. Usually takes about 20 minutes, happens almost exclusively while sitting - i.e. mainly while eating or writing - and then disappears as if nothing had happened. As an incorrigible optimist, I naturally assume that I will be fit again tomorrow - my last day.
The planned swimming and fitness training fell victim to the nausea. On the other hand, she gave me the time and the muse to bring my two blogs closer to my dear table partner. He seemed very impressed, which made me all the more happy that I was able to get to know him as a highly educated person. I will certainly miss our philosophical conversations, mostly after the respective meal.
By the way, I used the early 4 o'clock roll call to edit and upload my Tai Chi posting one last time.
If you are interested, you will find it here: https://parkinson-journal.de/tai-chi-und-parkinson.
Got to break up - football is coming soon ...
Day 21 Monday - the last day
As expected, fewer therapies were scheduled today.
I learned more finger and hand exercises in occupational therapy.
In physiotherapy, we tried new tests to find out the origin of my imbalance. My frequent dizziness - especially at the beginning of getting used to new medication - has probably set the wrong track.
Rather, it seems that the cause is more to be found in my eyes. I think we will continue to pursue this from tomorrow, in the follow-up rehabilitation that will begin.
One more final visit, one last check-up of my trachea and esophagus and my complex therapy is history.
A successful story, I think. My gait has improved a lot, back and chest pains have almost completely disappeared, my medication, which is now quite complex, does not cause any side effects, my voice has improved and the very best for last: my years of stomach ache and food intolerances are completely a thing of the past.
To be too good to be true? Well, no light without a shadow.
As reported, I am still struggling with imbalance, my ability to concentrate has suffered badly, my short-term memory is like a sieve and my psychological resistance is waning.
In short: the engine is running, but the on-board computer keeps crashing. (My metaphor production doesn't seem to have been damaged 😉) and there must be something left for the upcoming rehabilitation!
Kudos to the doctors, nurses, nurses, therapists and whoever else takes care of the patients, some of whom are very seriously ill. I have seldom (actually never) experienced such a pleasant climate, such a positive atmosphere in a clinic. Chapeau!
And then it doesn't work entirely without sadness. I will no longer see some of the people I have grown fond of:
Uwe, the always helpful Saxon.
Andrè, with whom I always went swimming.
Ms. Rosinski, my physiotherapist, who gave me a helping hand.
Philipp, the station manager, who is always attentive and always in a good mood.
Carl, my esteemed table neighbor, with whom I was able to have so many interesting conversations.
And many others, the only reason I don't mention them by name is that I don't have a photo of you.
Last but not least, there is this nice picture that Carl and Uwe painted for Sister Barbara.
So dear ones, that's it. My diary has reached the end of its days. Until sometime and somewhere. Maybe next year in the late summer in Bad Gögging.
Pfiat eich and hello, your Jürgen
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