Not Working For Me
Last updated: May 2021
I was diagnosed with Parkinson's about three years ago, at first my consultant was doubtful as to whether I had Parkinson's or not, I was not showing the usual symptoms, so I was taken off Parkinson's medication, I was o.k. for a few years, on a very lose dose of Madopar and then something tipped me over the edge. It was my birthday, great present, I saw the consultant and the mental health doctor, and a DaTscan was arranged for me. This showed I did have severe Parkinson's disease. One year later, I am on a very high dose of Madopar, plus numerous other tablets, for the Parkinson's, I think I take 25 a day, but some of which are for anxiety and depression and they help me. I am so grateful that we live in the UK. My medical bills would be horrendous, if we lived in the USA I probably wouldn't be able to afford them.
I have the non-motor version, of Parkinson's which does not show how bad you are, to others, as the feelings are on the inside, tremor etc., the family say you are looking well, how are they to know, or even begin to understand how dreadful I am feeling. I also have to take three blood pressure tablets day, for low blood pressure. I have fainted several times, my husband has had to pick me up off the floor, at least three times in the last two weeks. Meal times have become so difficult. I cannot chew meat and swallow it, it takes me about an hour to eat a very small meal, and I feel exhausted at the end of it. I would not want to go out for a meal. I would be too embarrassed.
I have been lucky if you could call it lucky, as since being diagnosed and me getting worse and worse we have had the lock downs, because of the Corona virus, I haven't seen my sister for six months, nor my 94 year old mother living in Wales, for a year, nor my family living in Spain. They won't think there is anything wrong with me, and expect me to behave as normal, i.e. traveling to Wales to see my mother and the plane journey to Spain. I am dreading it. They won't understand. I can't do these things. I think I have been a peculiar case, from the beginning, I wasn't showing or behaving like a person with Parkinson's but I had it and the medication, I have to take for it, just doesn't work for me.
Keep on hoping
I have been told it happens sometimes, I feel so sorry for my husband, he has become a full time carer, overnight. I go to bed sort of hopping I won't wake up again, but I love my husband, he is so good to me, and of course the rest of my family. I think there is a Robbie Williams song, where he says, I talk to God but he ain't listening, don't want to die, but I ain't keen on living either. Or something like that. I must be boring you people out there to death. I wish and wish and pray that they will find something to help with this horrible disease. We know there is a lot of research going on. We donate regularly to our local branch, of Parkinson's. We just have to keep on hoping.
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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