Appetite for life

“Satu Heiskanen suffers from ALS, which causes muscle atrophy. Giving up is not an option”, she says.

“I found it difficult to get up from the sandpit. I had to use the strength in my arms to help me get up the stairs.”

Satu Heiskanen thought her two pregnancies were the cause of her lack of strength. Her sons we born in consecutive years and she had sleepless nights with her youngest.

When her right foot started to drag and she became unsteady on her feet, her family made her go and see a doctor. Doctor’s suspicions meant Satu had to go for more tests. Over 6 months, the doctor ruled out various illnesses, but a gene mutation confirmed the ALS diagnosis. Satu, now 39, was 33 then.

“I don’t fit the typical characteristics of ALS. The diagnosis was a complete shock.”

The majority of those with ALS are men past middle age. The cause is not usually known, but for a few it is caused by a gene mutation.

ALS attacks motor neurons that control muscles. Muscles become stiff and weaken and experience cramps and twitching. ALS patients die from respiratory failure, but progression of the disease varies from one person to the next.

Satu doesn’t remember much from the time of diagnosis. She feels that the lack of information available then and poor support left her feeling helpless.

Her doctor told her to resign from her job. After complete shock Satu got angry and then became determined to find out more information and treatment alternatives. Satu is a nurse. She started phoning the doctors she knew.

“I knew I should ask for help, whom to turn to and I know how to use tools.”

The Tampere University Hospital’s Neuromuscular Research Center found that Satu’s illness was caused by a rare combination of three or four different mutations.

Her limbs kept getting weaker. The family had to move from their twostorey house.

“We found a good home in all the hassle and fog. My professional skill helped me see the potential in the house.”

It is easy to move around in the spacious terraced house. In her new home Satu needed a rollator, which was soon replaced with an electric wheelchair.

A multi-professional team at Turku University Hospital’s Physical and Rehabilitation Medicine Outpatient Clinic looks after Satu’s rehabilitation plans. Satu feels her visits by a physiotherapist twice a week with breathing and physical exercises are very important. She also praises the assistance given by the breathing support unit.

There was a challenging period a few years after she became ill. Satu had pneumonia five times in six months.

Satu is convinced she was saved by a cough assist machine given by a physiotherapist from the Finnish Neuromuscular Disorders Association in December 2014. She has not had pneumonia since getting the machine.

Now, almost six years after her diagnosis, the illness has progressed so much she needs 24-hour care. She can speak, eat and drink, but no longer walk. A urinary stoma makes it easier to go outside and bilevel pressure ventilator assists breathing at night.

The support of loved ones is very important. On weekdays from early morning until 3pm Satu is assisted by her mum and after that another assistant. Satu’s husband is her carer and he looks after her in the evenings, at night and on weekends. Relatives who live nearby visit often.

“The people around me have found it harder to deal with my illness.”

Before she became ill, in her work at the neurosurgery wards at the Turku University Hospital, Satu saw patients with many different stories, which has stopped her from getting down about her own diagnosis.

“I am used to everything apart from my breathing difficulties.” Being reliant on others is difficult for Satu who is used to getting things done.

Others have benefited from Satu’s know-how and the fact she doesn’t give up, as she is actively involved in the

voluntary Finnish Association for Supporting ALS Research. The research data and peer-support forum on the association’s website play an important role for patients who find it hard to move and communicate with speech.

As the association’s secretary, Satu passes information between patients and university hospitals.

“In a way, I have been able to continue in my profession.”

Black comedy and two sons’ (age 7 and 8) energy and everyday occurrences help Satu get out of bed in the morning.

“If I didn’t have children I don’t think I’d have carried on.”

Facts

  • ALS is a progressive, rare motor neuron disease, which destroys the motor nerves that control muscles.
  • The disease usually starts with weakness and cramps in a limb. With some ALS patients the disease first affects
  • the throat muscles.
  • The main symptoms are muscle twitches, stiffness and weakening. There is no pain.
  • There is no treatment to stop the disease’s advancement.
  • Rehabilitation according to symptoms provided by various professionals helps to preserve ability to function.
  • It is vital for the patient and their family and friends to employ and active approach.
  • 400–500 people suffer from ALS in Finland.
  • The Finnish Association for Supporting ALS Research collects donations which are given in full to Finnish research on ALS.

Text: Minna Takkunen

 

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