I was born with cerebral palsy. I am spastic in my legs and arms – and also my face and chest. This makes life very challenging – sometimes painful – but mostly just very frustrating. I always had a lot of ideas and thoughts to share but speech was difficult for me – and difficult to understand for those to whom I was talking. The more frustrated I became, the more spastic I became – a nasty circle I often found myself caught in.
In February 2003 I had a Baclofen infusion pump inserted. It has changed my life drastically. I had dealt with spastic muscles for almost 28 years. Now I had to learn how to live with relaxed muscles – everything was different! At first I could not hold my head up against my headrest so I could not eat. My caregivers did not know how to handle me relaxed and I felt heavier to them. I sat heavier in my chair and started to develop the first pressure sore I ever had – thankfully we’ve worked out those first problems.
It felt so good to me not to be spastic and able to relax that I wanted to just sit and enjoy the feeling. That couldn’t last, of course. I had to get on with the business of learning to live with my relaxed muscles and find out what I will be able to do with them – and I am still in that process – and expect to be the rest of my life.
The pump has done a good job of helping me relax, but, of course, I still have the reflexes. I like to look “pretty” but I have learned I need a chest support and a splint on my left wrist to help me be able to speak more clearly and use some of my fingers. Before the pump, the only dependable movement I had of my body was of my head. I am excited now to be able to explore different job opportunities – still using my head but with a little help from my hands. My new power chair is expected in a few days – and I will still operate it mostly with my head but also some with my hand! I may burst with excitement before the chair even arrives!!!
Life is still challenging for me since the pump – and sometimes even painful. Isn’t yours? After all, life is a challenge. My challenges are just more visible than the challenges others face in their lives. We just do the best we can everyday – and be thankful for whatever help comes along the way. For me, one of the greatest helps to come my way has been the Baclofen pump – and I am thankful everyday for the changes it has brought into my life.
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