The Uninvited guest and his friend
It was suggested to me to write small blog on my latest adventure in life, I have been living on my sofa, we have a good relationship, it moans at me for fidgeting, due to the discomfort of sitting there most of the day, due to chronic fatigue, and lockdown imposed by my condition and medications. I have sought advice from my doctor and Parkinson’s nurse, my new adventure started with quite a lot of blood test, which were normal but they wanted to further investigate high iron content I n my blood, after a good few months I was informed by letter from my doctor that I had hemochromatosis, deep joy, a real Brucei bonus, this could be one of the reasons for my fatigue, I had never heard of this apparently both m parents carried the gene and it is hereditary. I was keen to find out all about this disease looking at the various websites which can be good or bad, I like to know the enemy so it was good for me to investigate, the condition is treatable, the treatments are uncomfortable, something called venesection which is removing blood from the body to lower the iron content. So, I have been informed that I must go to hospital every week for 18 weeks to have blood removed, there are other treatments which sound horrible, but if left the condition can have serious complications. So my first visit was on the on Friday the 6th of august, I was not looking forward to it, but cheered myself up thinking that I would get a big slice of cake after I had given my blood, not the case regulations done , they always say it will just small scratch but that is not the case I must be a wimp, however the nurses were absolutely fantastic and explained the procedure to me, it lasted about 15 minutes, I then rested for quite a while I was really thirsty and feeling weak, my wife gave me a banana and some nuts which helped me to recover, I was also wearing off and I get really bad about twenty minutes before my medication, the next question is how this will affect me with the medication accessing the brain through the blood, we left the hospital I was very weak and the legs were heavy, and I was not focusing right, I would just like to emphasis again how excellent the staff were at the liver centre Portsmouth QA, it was really reassuring. My wife drove me home she is an absolute angel for what she does for me, Friday night I was stuck on the sofa I did manage to eat my evening meal which is a good thing, I was falling asleep on the sofa, on the Saturday we had people visiting, I was totally out of it, stuck to the sofa sleeping and totally not with it, normal day , I was totally drained, Sunday was not much better I did manage a small walk because I was going stir crazy stuck on the sofa. It took me about four days if not longer to recover, I must change my diet to ensure I do not eat or drink food and beverages that have iron in them, as my levels are high, I have been on the venesection for about three weeks, I have also had my medication for Parkinson’s reduced ,I am really weak and have no energy at all ,my day last about 2 hours 10:30am it is back to the sofa hello my friend another long day of sitting I know there are members with far more difficulties than me. I hope this is of interest to someone
Hello Marc
I have just caught up with your post and I have to say it sounds horrible. Since being diagnosed I have been intrigued to discover just how many of us Parkies have another equally serious medical condition. I myself am walking round with a shunt in my head following a diagnosis of hydrocephalus only found because of a dbs assessment. They had earlier concluded it was an incidental finding as I had none of the expected symptoms. To be fair it hasn’t caused too many problems except many symptoms are the same for both so trying to determine which bit needs adjusting can be fun. Seems you have drawn a particularly short straw on top of the Parkinson’s so just wanted to say hope you have picked up and I sense an underlying current of ironic humour in how you write, I hope so because things like that can keep you going. Me I use black humour - it may be bleak but it’s honest although family and friends find it hard to hear. I hope you feel able to post from time to time. We may not be able to help much but there will always be a friendly ear.
Best wishes
Tot
Hi Tot, hope you are doing okay and enjoying the sunshine, I Have been away enjoying the delights of Exmoor ,we had some good weather which was nice, and I managed to stay awake for the activities, I feel like a remote control robot, my wife winds me up points me int the direction, when i stop I just fall asleep, I am sorry to hear about your condition, I am with you intrigued also about what others have to put up with on top of parky, they only found out about my parky friend hemochromatosis ,because I kept on going on about my fatigue,it is no fun walking round with a sofa, although we get on fine, I spend my life on it,when they know they can treat the condition. it is not too bad I go every Friday for the venesection, they take a small amount of blood to reduce the iron, in my system, your right humour is good, I think you need to have a laugh if you can, I hope things get better, me and the sofa are going to have a cup of tea,nice to hear from you .