COMING HOME THE DOUBLE EXPERIENCE CONTINUED ... Christmas 
friends ask me every now and then news. Unfortunately I can not answer all soon. By communicating through the blog you lose a lot of personal relationship but you gain the time ... when you are suffering from a disease for which there is no cure, it becomes a little and seems never enough for their projects. Yes, paradoxically you still want to think about what we can do interesting in the coming days.
I apologize for the wordiness but I wanted to publish the post before the forthcoming admission ... I'm better when ... also improve the writing.
Best wishes and happy new year to those who read
LAPOMPA apomorphine
We were in the autumn, again in 2008 I had already made several attempts with drugs orally without seeing significant results because we have come the decision to try to apomorphine PUMP .* (see note at end of page.)
The results were encouraging and, especially the first time it made me more bearable the needle, I had daily placed under the skin to breathe apomorphine. The process of learning to use the machine and check tolerability occurred in the Day Hospital but had to proceed more slowly than expected because I had problems taking the drug that takes away the nausea that usually, especially in the first days, apomorphine leads.
In February 2009 I underwent the intervention of the carpal tunnel, between visits, pre-and post-operative period, for a sufficiently long time I gave some thought and some pain but in more which fortunately was resolved.
As the months passed I began to no longer afford the pump, the pump rather than the needles that I was living a nightmare and cumbersome dyskinesia: worth thinking about anything that was a source of wealth than other therapies. Upon learning of an association of Milan, which refers to a specific center for Parkinson's, I turned to it for advice and to hear another opinion.
without long waiting times I was a free tour booked by the Director of the Centre.
ASSESSMENT OF THE STATE OF THE DISEASE AT A PLACE DIMILANO
After the tour and the usual routine of exercises to assess the situation and the level of disease was established a shelter that took place from May 25 for about a week to to undergo some diagnostic tests to know the stage of Parkinson and to understand what would be the best treatment.
I was subjected to MRI scans of the brain and cerebellum to understand the state of "receivers" of dopamine.
He also pointed out a suspect, to be confirmed without haste, a SYNDROME PAGET: other disease gene that affects the skeleton, (not to go off topic. ) Fortunately it was a "twist of fate," he sucked in some more radiation, but not risultai affected.
The test drug levodopa (observation of motor response with or without medicine even with the video recording) emerged that reacted positively to the assumption of being off medication and that there is reduced motor impairment while instead there is marked anxiety with shortness of breath.
seemed that excessive dopaminergic stimulation had been the cause of past dyskinesia (uncontrolled movements) probably in turn due to the decrease of body weight From what I have incorporated doctors feared they would find a worse situation.
With the reduction of drug pump, that still left me, they let down a lot dyskinesias. As the body was affected by the shortage of the drug addiction that had led to some 'I would have to endure the discomfort caused by a lack .
I was told not to scare me for engine blocks or other discomforts, such as respiratory problems, due to lack of drug that may arise during the day. reducing apomorphine (the pump that is an activator of dopamine in the body) I would not be right away, but considering that I could not do it tried to reduce the dose if necessary adding levodopa (dopamine synthetic) not too much. . I was told that it was necessary wait at least a month to see the results. My body had to adapt and understand why fluctuate between states of well-being and where I was wrong.
I knew then that as far as drugs against Parkinson's (and I think for almost all diseases) there are at least two different addresses: one that raises the doses of medication and then decreases (when the set) and the other part by lower doses.
There would be a monthly monitoring for the first time and every week I would have to report by telephone to the doctor followed me all the changes for an evaluation and / or adjustment of therapy.
I managed to hold the pump up al'autunno but then collapsed and I was too heavy to travel to the city and attempts to contact with medical care, find them on the phone was a lottery and then talk to him you had to have the ... speed of a moving train,
SUSPENSION PUMP AND RETURN TO VERONA
We understood that the sense of using the pump was to seek an order that would as closely as possible to the physiological but decided , although not entirely favorable opinion of the physician, to suspend it.
I felt I could count on a Dr. closer to home, I turned over in Milan. It was to resume experiment with drugs (who we guess is good!)
SOME OPINIONS
After taking the decision to remove the pump to apomorphine advice on the doctor who had me taking over, October 13 I went to Mestre by an expert treatments for Parkinson's disease so that reports of my disease:
- complicated by a number of symptoms "no motors" including those related to anxiety and an intestinal dysautonomia. onset and evolution are characterized by an intolerance to levodopa as well as the pump to apomorphine. The neurological examination (on part) shows a minimum motor impairment with significant psychological symptoms (anxiety and depressive features?), As well as numerous symptoms gastrointestina ... .. there is no indication for an operation of neuro deep brain stimulation (DBS) in consideration of psychic sintomatolgia and behavioral .-
On 21 October I saw a doctor internist thought that my situation is very complex, proposed a program of nutritional support and advised to resume treatment with bio-feed-back, already successfully in the past, to better control the emotional responses to suffering from particular neurological disease,
THE WEIGHT-LOSS AND THE DECISION OF THE PEG
Previously, many have underestimated my continuous weight loss to the point that I got to 37 kg and the drugs were no longer effect and therefore I was also very ill and ended up in the emergency room.
The neurologist advised us a visit from a colleague gastroenterologist. But she had already thought of without too much delay, a PEG (PEG: Forced Enteral Nutrition and feeding tube through the hole in the stomach 's introduction of food).
not hear other opinions even if we were told that the circumstances make it necessary and urgent for the PEG is that the patient does not eat alone and barking problems swallowing. Perhaps my thinness was related to the use of drugs, but proceeded to ... February of 2010 I underwent PEG.
The thing was not quite so simple nor the food that contained protein introduced that is ill mate with antiparkinsonian drugs. (See first written "levodopa") In this the doctors just did not seem to give much weight but in reality I have created many problems.
THE SITUAZONE worse HOSPITALISATION
So other complications did not allow me to sort myself out and I was forced to be hospitalized for 3 weeks in a hospital in the province where I could find doctors and staff very helpful in trying to understand what was the best way to help me .. So ... what solved a little 'problem was ... (here it is again!), THE PUMP apomorphine that I'm back to put it can live with the protein contained in the pockets of nutrition (NUTRISON) . As if the needle put it another feel less bad my husband has it tried so hard to do his best, unfortunately, the perception of pain often persisted.
In July, I was replaced the PEG tube with a closure of the worn-shaped buttons. The intervention was not painless but nonetheless did not require even local anesthetic : Imagine removing a cork from the bottle (of champagne) or placed upside down with part swollen inside and then transmit another. I knew then that there are catheters with inflatable anchor balloon deflates when you take off without pain.
There is a reason in choosing a system rather than another, but sometimes I wonder "on a small sconticino pain can someone give? "
I grew up and got to weigh almost 46, but eat more often orally agreed to keep the gastrostomy in for a new weight loss but also of any need to use the pump to Duodopa as a means of therapy, which requires a pump gastroduodenal tube.
As happened in the past to apomorphine pump did not always work optimally, inter alia, contrary to Milan was still using a lot of Syrian and rotigotine patches. Presented to me, at least once a day, and then in the evening when I removed the pump, the "off" mentally heavy enough:
prevalent respiratory problems but almost all start from abdominal strains. this together with dyskinesias at the end of the summer I went to drop. seemed more aggravated after replacing the old tube which seemed to relieve tension abdominal still stands out and shows during the phases of off.
at night had increased the stiffness so I did not sleep continuously. Imagine waking up without being able to move a muscle in your body and even more because you can do a whole block. Even in this situation is lack of breath because the chest muscles and abs are not exempt from the fate of the other and so one has the impression of being in a press (never been but I imagine so)
not all, sometimes not even close family members understand this strange paralysis that fluctuates between states of tension and excitement (it was called "shaking palsy" ) and states of stiffness and locking of the language. Above when you are unable to express themselves is difficult to suggest how to help others if you already are not intuitive and insightful in nature or have already been trained.
Finally, given the weight loss, we returned to the use of PEG in different packaging for its awkward shape (not very functional or unable stud I). And 'round to difficulties in finding places with subcutaneous fat in which to implant the needle and I accept the pump has become unbearable, so much so that sometimes I start panic, with hypersalivation, hyperventilation difficulty swallowing.
me they arise after lunch when the food is still not completely passed from the stomach or when the needle is no longer free in the surrounding areas which release their drug
In these situations I'm not good either sitting or lying down and if someone touches my only increases the rate and breathing becomes more labored.
Parkinson's or Parkinson's?
The usual levodopa did not seem satisfactory results in sorting and since I have not had nearly the length of time being on the correct diagnosis often reflects on me and autumn FAStT I was very impressed intervention in a television broadcast an interview stating that currently there are diagnostic methods able to differentiate Parkinson's disease from parkinsonism, not that one is better than the other, but it is important to assign the right treatment for the purpose of a rehabilitation or return to work and social life.
discovering that among the various examinations in the past, I also I underwent a heart scan , I tried to understand its value for a correct diagnosis my case. Who examined it did not consider especially pertinent.
We had the opportunity to show the scans and make yet another visit for further evaluation in October Turning to a respected neurologist who was trained on the new diagnosis of Parkinson's in fact, these are his conclusions:
"In recent years the emergence of motor fluctuations and dyskinesia associated with anxiety and panic attacks at the end of dose. Marked worsening in the course of 2010 (will not be like the Richter and Mercalli scale. If one is being treated by a doctor that goes the shot in medicines is a serious if it's from another that is less severe drops?). He PEG supply because of severe weight loss. It currently has engine blocks associated with autonomic disorders and involuntary movements of dystonic dyskinetic type. Atypical course is relatively fast with the need to increase the dosage of dopaminergic drugs (possible poor absorption) (a I was told that the psychological symptoms are heavier and need to be able to withstand the increased firing, a thing bear is a block of the feet, the other one of breath or abdominal cramps.) MIBG myocardial scintigraphy apparently normal.
I should use the duodenal infusion of levodopa, considered that the PEG has already . (Nov 2010)
PUMP TO Duodopa (article at the end)
... The neurologist who follows me now share this view, there seem to see other solutions.
We had to have surgery in October, now set for the first year already moved to 10.
Sometimes I pause the pump and use the equivalent amount in Sirius. But it is the lack of continuity of terapiache is more harmful. Imagine a car that goes forward and stops because have to stop every so often to put gasoline.
So it is now waiting for me and this happens all: feel good, feel sick at the end of life.
I hope will come soon on January 10th and I hope to get there too ..
http://www.parkinsonitalia.it/terapia.htm # Duodopa
http://www.parkinsonitalia.it/inuovi1.htm
