– I feel very alone – news Nordland

Helene Grotle places a ball with spikes under her foot and moves it in circles. It is one of several exercises she does every day to take care of her body. – I know that I have to train to be able to stand a job. But the exercises themselves are not enough, I need more help. Among other things, to get to know my body again, says Grotle. In January, the 50-year-old was diagnosed with Parkinson’s. For a long period she did not participate in social settings. She fell to the floor at home and tried to hide her tremors. – Getting Parkinson’s at the age of 50 has been a heavy, mental strain. I went straight to the basement, lay in bed for five days and couldn’t talk to my family on the phone, she says. Two refusals for rehabilitation Every year more than 500 Norwegians are diagnosed with Parkinson’s disease in Norway. Most are elderly, but close to 10 per cent of those affected by the chronic disease are under 50 years of age. The mother of three is a trained nurse and currently works as a health teacher at Bodø high school. While she teaches future healthcare workers, she fears that one day she may end up on disability benefits. Helene Grotle tells of a stiff shoulder tremors, an arm that does not work as before and impaired balance in one foot. Here together with GP Marius Edvardsen. Photo: Vilde Bratland Erikstad / news The reason for this is that Grotle, who has Parkinson’s, believes she is receiving too little rehabilitation. – I feel very alone. The only offer I have received so far is physiotherapy and a two-day course. I really want to be in work, and feel I have a lot of resources and knowledge. Grotle’s neurologist at Nordlandssykehuset has referred her to a stay at the Ringen rehabilitation centre, which specializes in, among other things, Parkinson’s for young people affected by Parkinson’s. The applications have been rejected. The argument that she does not qualify for a stay there. Grotle complained about the refusal, but has finally received a refusal from the State Administrator (in Troms and Finnmark). Having to do the work herself Soon after Grotle was diagnosed, she was sent on a learning and coping course. There she and her husband were able to meet various professional groups and learn more about diet for patients affected by Parkinson’s. But as a new patient and relative, there were many questions. What is Parkinson’s disease? Symptoms: Trembling in the hands Stiff muscles in the body and face Movements can become slow and it can be difficult to, for example, get dressed Impaired balance Sickness gets progressively worse over several years Increased sweating, swallowing difficulties, constipation and the like can occur Difficulty sleeping Some develop dementia, depression, delusions, but usually late in the course of the disease Cause: Due to gradual destruction of the nerve cells that secrete the signal substance dopamine in certain parts of the brain. Dopamine regulates movement in the body Sources: NHI.no, SNL.no and parkinson.no. – Both my husband and I asked about follow-up after the course. But such an offer did not exist. They claimed they had never been asked that question before. Grotle has therefore spent the last six months familiarizing himself with all the information, advice and tips. – The optimal thing for me is to try out several different training programs that are adapted to me. That way I find out what is right, because I don’t know that today. The 50-year-old explains that the disease is developing, and that it can be felt on the body when there are long training sessions. – For me, rehabilitation is important in the early stages, because it makes me better prepared for what lies ahead. The mother of three has always been an active woman who thrives in nature. She still goes for walks, but it’s to train her balance. Most of the training takes place at home. Helene and the family have dogs that need to be ventilated. But according to Helene, walks with the dogs are not enough to keep the disease at bay. Critical of own municipality Grotle has had a close dialogue with physiotherapist and GP Marius Edvardsen since January. He thinks the offer Bodø municipality offers Parkinson’s patients is too poor. – Helene and other patients need their own tailored follow-up that enables them to understand their own illness, get the right training and meet others in the same situation. Edvardsen emphasizes that very few people get Parkinson’s at a young age. – If a young patient gets a good rehabilitation offer early on, I think more people will be able to stay in work to a greater extent. Marius Edvardsen is Helene Grotle’s GP. Photo: Vilde Bratland Erikstad / news The GP says that the assessments he and his colleagues make are weighted to some extent, but that the bureaucracy chooses differently. He believes the reason for the lack of rehabilitation services is the municipality’s poor finances. – The justification we get in some cases is that it can be solved at home, instead of a rehabilitation stay. I hope there will be an improvement, he concludes. Conservative Party with more proposals Conservative politician Erlend Svardal Bøe sounds the alarm and is critical of the current rehabilitation offer for this particular group of patients. Erlend Svardal Bøe (H) visiting Helene Grotle in Bodø. Photo: Private – The problem with the recommendations is that they are not adapted to those with Parkinson’s under the age of 55 who are working. The Frisklivsentralen focuses on completely different things. The consequence is that Helene and other Parkinson’s sufferers have a reduced quality of life in everyday life and working life. It is quite obvious that she needs a better offer, says Bøe. And adds: – Getting Parkinson’s at a young age, being denied rehabilitation and in reality not having any adapted offer is a big mental burden in addition to the disease. This is the Conservative Party’s proposal for better rehabilitation services: Photo: Gunnar Grindstein / news Helene Grotle was visited by Erlend Svardal Bøe in the Conservative Party in May. The politician is shocked that Grotle is sitting at home without a concrete rehabilitation offer. – The offer is not good enough and Helene’s story is a clear example of that. The National Audit Office’s report from April states that Norway does not have good enough rehabilitation services, and that patients do not get the help they need. Svardal Bøe believes that the politicians must take this seriously, and at the same time is critical of the fact that today’s health and care services are moving from 24-hour treatment to more day treatment. – At the same time that the government is reducing the private capacity in the rehabilitation service, they are not building up the public one. The sum of this means that there will be fewer 24-hour places for rehabilitation in the hospitals, which in turn leads to people who could have been working ending up disabled. This is what the Conservative Party proposes: That the Storting ask the government to investigate and introduce a package process for habilitation and rehabilitation as part of bringing about better interaction between the primary healthcare service and the specialist healthcare service and a more comprehensive patient process. The Storting also asks the government to consider the possibility of a separate digital home delivery process. That the Storting asks the government to carry out a comprehensive professional review of the overall rehabilitation and habilitation offer and to present a projection of the need for both the municipal health service and the specialist health service until 2040. That the Storting asks the government to wait for changes in the division of responsibilities between the specialist health service and the municipal health service for rehabilitation and habilitation services until until a comprehensive professional review of the overall rehabilitation and habilitation offer has been carried out. – Helene’s story makes an impression, and it is quite obvious that she should have had rehabilitation and not get the services she needs, says Bøe. Support from the association Secretary General of the Parkinson’s Association Kristin Ruud. She thinks it’s sad to hear about Grotle’s experiences. Kristin Ruud, general secretary of the Parkinson’s Association. Photo: Trond Høines She says it’s not necessarily about age, but about where in the country you live. – We know that several municipalities have an offer that is far too poor. In addition, we notice that some healthcare companies are saving money, Helse Nord is one of them. Ruud mentions that the members of the Parkinson’s Association have various opportunities for information, help and contact. Nevertheless, she mentions the importance of Grotle receiving a rehabilitation service. – She must be very clear about what she needs. Unfortunately, we have seen examples where it is not possible to get customized follow-up and treatment in many places. It is extremely important for people with Parkinson’s to get started and exercise correctly. news has asked Bodø municipality several questions about Helene Grotle. They do not want to comment on the matter in the media. State Secretary Karl Kristian Bekeng (Ap) says that the government is aware that the National Audit Office’s report is clear that we do not have good enough rehabilitation services. – The report gives deserved attention to an area of ​​great importance as we get older, and have a greater need for as many people as possible to stay as long as possible in working life. The report has given us a good basis for knowledge, and the government is following it up in close cooperation with the Directorate of Health. Read the full response from the State Secretary State Secretary Karl Kristian Bekeng (Ap) continues: – In the National Health and Cooperation Plan, rehabilitation is widely mentioned, and improving the rehabilitation offer is a clear goal that we are currently working towards. Among other things, we will ensure work-oriented rehabilitation in close collaboration with, among others, NAV, and not least that people with chronic diseases, for example Parkinson’s, are taken care of. There will still be an offer of 24-hour treatment in hospitals or private institutions for those patients who, according to a health professional assessment, have the best health benefit from such rehabilitation services. – What do you say to the fact that a woman of only 50 with Parkinson’s does not feel that she is getting the services she needs? – Without being able to go into individual cases, it is not lucky if patients do not get the rehabilitation services they need. Younger people who develop Parkinson’s will often need a fitness center and other training facilities in the municipality where they live. The government will use the health partnerships between municipalities and hospitals to develop good, holistic patient processes as Helene requests. Patient procedures that are adapted to local conditions, we believe, will be better for Parkinson’s patients than new national package procedures that will take a long time to implement. Published 14.06.2024, at 16.05



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