The struggle continues!
Since the appearance of the first effective drug for spinal muscular atrophy, my biggest dream was to qualify for the treatment, which has become my only chance to live ...
Today I am already after four doses of the drug and I am getting stronger!
My dream came true on December 5, 2017! It was on this day that I got the first dose of a breakthrough drug called Nusinersen as part of a further study of the medicine carried out in Belgium on people with the first type of SMA.
Nusinersen is a drug that is able to effectively stop the progress of this destructing disease. Administered in the first months of life, it is able to make children with SMA develop normally similarly to their healthy peers. In the case of adults, this medicine also works, but due to the great damage that the spinal muscular atrophy has managed to do within the 21 years of my life, the whole process of treatment lasts longer and does not guarantee full fitness.
As I said in the report of 26.10.2017 for TVP3 Rzeszów - "The slightest withdrawal of the disease or even stopping it, will fully satisfy me".
I had already had an opportunity to inform you about the first effects of the therapy on my facebook fanpage:
Each dose of Nusinersen brings further effects.
After the II dose (18.12.2018):
- Improvement of muscle tone of the back.
- Improvement of the right hand muscle tone.
- The appearance of movement and raising of the right hand.
- Improvement in well-being (the feeling of being stronger).
After the III dose (08.01.2018):
- Improvement in the tension of the abdominal muscles.
- Improvement of chest muscle tone.
- Strengthening the voice (strength and articulation).
After the IV dose (06.02.2018):
- Improvement in the muscle strength of the entire back.
- Increased respiratory efficiency.
Currently, it all depends on how much I will be able to work out through rehabilitation, so now that I feel stronger, in addition to daily rehabilitation with a physiotherapist, I would like to start exercising by myself to make the most of the opportunity I have been given.
At present, my muscles are still too weak to enable me to do any exercise on my own. However, the method of 'muscles relief by suspension' makes it possible, although at the same time it is very exhausting.
It will not be easy, but I believe that thanks to you I will make it!