I wish to write here in a frank and open way about the way the progression of Friedreich’s Ataxia (FA) has severely impacted the proceedings of everyday life, particularly when the progression is well advanced. I am writing from the standpoint of what those in my profession of sociology would say is “participant observation.” I am using my own observations about my own individual form of Friedreich’s Ataxia to issue advice, to give a breakdown that may assist fellow sufferers and other readers to get a sense of what this condition means. Hopefully it will help in the attainment of an adequate diagnosis to some of the problems and promote forward thinking to have remedies in place before the onset of an advanced stage. Many of my problems today are severely infused great discomfort, also in little niggling matters.
Here’s an example: one of my major problems is an inability to sleep at night. It is to be expected that when you are in bed at night, all tucked up, you will usually have to move around until you feel comfortable. Not so in my case. My ability to move around in bed has virtually ceased. But at the same time my need to feel comfortable before dozing off has actually increased. I also need to always lie on my side, a posture that is necessary to stop me from choking. You will know how choking is an awful feeling. Recall how when, on occasion, you were having your evening meals and somehow you spontaneously regurgitate what you thought you had just swallowed. You are left gagging and breathless. This action of gagging with breathlessness is a body’s response and it is not only related to digestion and food. For me Friedrich’s Ataxia means that I too easily choke if I am trying to get to sleep on my back. That is why I sleep by lying on my side.
By telling you this, I am not trying to blow my own trumpet. I am only trying to describe the discomfort and the need for careful positioning, warning others with a similar condition of what can be required as the condition advances. As I say, this is a sociologist’s report from “participant observation.”
Trying to attain what I would call a comfortable position leaves me feeling very uncomfortable! I find this totally intolerable state of affairs to be part of what I experience whenever I try to do something that I need to do but I cannot do. When you are in bed at night and lying flat on your back with a desperate need to curl up into a more comfortable sleeping position, this is simply impossible without personal assistance. However, I am writing this to alert people like me what the latter stages of Friedreich’s Ataxia can be like.
THE JOY OF FRIEDREICH’S ATAXIA
So, what am I suggesting? First, a number one consideration for dealing with Friedreich’s Ataxia is the need for ongoing exercise of every muscle in your body as there will be a time when you will need it to be working as strongly as possible. I know that it is not possible for such regular exercise to strengthen all one’s muscles, or defeat a condition that simply reduces the muscles themselves. But we must always look to adequate compromise by staying as healthy and as fit as possible. For example, rolling in bed at night, this should be simple and common place for many, but it is not possible for most individuals in the later stages of Friedreich’s Ataxia. Friedreich’s Ataxia so inconveniently weakens the muscles you require to perform most daily activities. The amazing thing is, once one problem relating to the later stages of Friedreich’s Ataxia becomes apparent, it then becomes a catalyst for a future batch of deeply irritating problems.
The later stages of Friedreich’s ataxia, for me have reduced my capability to sleep at night, as I am incapable on most times of feeling comfortable enough in bed to doze off. I used to exercise a lot but today it just seems so much more harder. I cannot dispute facts, as time goes on, things only become harder, but the progress of the restrictions brought on by Friedreich’s Ataxia have seemed to multiply alarmingly as the years have dragged on. When you are younger, you are more full of life, even though in most cases Friedreich’s Ataxia will try to stop you from achieving. When you are young Friedreich’s Ataxia is a significant problem, but with aging it will magnify and distort the disability, challenging every biological and interdependent movement the body can make.
I have just heard about a mechanism that is capable of rolling you in bed. I am in the process of trialling it.
Thank you to Dani, Amanda, Lina and Sarah for being beautiful people in their assistance of me in finishing this work. A big thank you to Bruce Wearne in all his work that has helped bring me to this stage.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
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