Short, infrequent bouts of shaking and an update on my Dad.

Hi all,

Thanks again for all of your support, it really does mean so very much to me to hear from you all!

Marion,

Many many many thanks to you for suggesting that I look into using the search function on the site. I was searching the site last night for posts relating to PDT and came across a post from early 2006. The thread was regarding PDT in the Uk and someone posted that there were only 2 trials for this in the UK, one by a surgeon in London and the other by a Mr Tait at Ninewells Hospital in Dundee. My Dad was treated at Ninewells and his specialist is Mr Tait! The treament Mr Tait and his team gave my dad was superb, he was always there for us and was more than happy to spend lots of time with us all. I always felt that my dad was in good hands with his specialist and after reading that Mr Tait was one of only 2 surgeons carrying out PDT trials in the UK, I feel that dad really is in the best possible hands. I told my mum and dad today about this, and they were both very very happy to hear this. They also both felt very happy and comfortable with being treated by Mr Tait, but now that they know that he was carrying out trials and research, they feel even better about the care my dad is getting.

Thank you very much Marion and huge hugs to you!

Jeff,

Thanks again for thinking out aloud again re the parkinsons and how his meds may have progressed it if he does have it. I know nothing about parkinsons or the symptoms but I think I will have to look into this further. I’m a bit wary of mentioning this to my dad right now as I’m sure you can imagine, he has a lot of other things to deal with right now. His GP did say to him previously that he did not think parkinsons was an issue then, but as you say, his meds may have progressed it.

This not sleeping at night is really hitting my dad badly. He is used to a very regular 8 hours a night every night when he was working. He never worked shifts like I did so his body clock was very regular, unlike mine as I worked all manner of different shifts week in week out. He’s only ever had 1 job and worked for 48 years for the same company doing the same job 8 to 5 every day every week. I think you might be right regarding the change in habits, excercise and metabolism brought about by this horrendous illness.

Rank,

Thanks for your support. I can totally relate to what you feel when you see your dad shake. It’s never nice to see a loved one like this and like your dad, my dad is a very proud man. I will do anything and everything in my power to help my dad and make his life as easy and as comfortable as possible. Sometimes though, I try to take a step back and let dad try certain things as I do not always want to just jump in and ask if he needs help with that. He is a proud man and I repect that so much.

He had an incident in the hospital when he had to sign his name to a form for something. He really couldn’t do it and his arm was shaking really badly and this made him a bit panicky. The harder he tried, the harder it became to sign his name. I told him to stop as I could see how agitated he was becoming, but he carried on. Sometimes he really is a stubborn old goat! We made a joke about it afterwards and he was okay. I’ve mentioned in previous posts that dad has a great sense of humour and I think this helps him deal with certain situations.

I’m glad that the reikye situation gave you a much needed chuckle, it did the same to my mum and I also! I sure hope that your dad gets some sleep soon. Have you tried a few drops of lavender oil on his pillow? Our Macmillan nurse suggested this to my dad and I got some for him this week.

Many many thanks to you all and the best of wishes to you and your families.

Gavin

Hi Marion,

Many thanks for your advice and sharing your experinces with me. I Hadn’t thought of using the search forums facility to see if there were any other threads on this, but I will do so now. Thanks also for telling me about what you and your husband did with the blankets. Since my dad never complained of being cold at the time when he shakes and shivers, I would never have thought of that. The doc’s never told us of looking out for a temperature at the same time as shivers or the importance of looking out for this, so thanks also for this. Someone else on this site I think, sorry I forget who, said to watch out for signs of a fever or temperature as this could mean that the stent was becoming blocked. I sure have learned an awful lot from everyone’s experiences here and from their willingness to share them with me and others! Such a great site!

Today we had a good day and a good laugh also. The reikye therapist from the Maggie’s Centre in Dundee came to see my dad for the first time about his lack of sleeping. She explained what a reikye massage involved and what it might do for him, dad explained his sleep problems lately and how annoying it was for him. The therapist explained that some people may fall asleep eventually during the massage, however my dad was a bit sceptical I guess but was up for trying it. My mum and I left the room and let the therapist do what she does. 5 minutes later, she comes out of the room and says my dad was seriously asleep! When we looked in, he looked like Homer Simpson sitting in his chair snoring his head off!! My mum and I had a great laugh at this and when dad woke up he thought it was very funny! It was also good to see his sense of humour was still there.

Thanks for your support Marion and big hugs to you too.

Gavin

Hi Lisa,

Thanks for your kind words and your post. I’d never heard that of PDT, but I had read that the treatment was now being expanded and used in some other cases for other kinds of cancers and treatments as well. I will keep everyone updated as to how it goes for him.

Hi Jeff,

Thanks for your post. My Dad was given temazepam in the hospital to help him sleep, but that did not work. He was given Diazepam by his GP last week, but that does not seem to be working at night either. His Macmillian nurse said that they could look at stronger tablets, but my Dad wanted to give the Diazepam a try for a few weeks or so to see if that worked. We are getting him some relaxation cd’s to listen to in his bed to see if that will help, but maybe the reikye massage tomorrow may help him relax. It just seems a bit weird the he can sleep during the day and evening, but not when he should, at night. It seems like he has turned night into day and vice versa.

As to his shaking, it seems like a continuous sort of shivering shakiness, but he does not complain of being cold at all. It is not a jerky type movement and when it happens, it does happen continuously and does not just come and go. Then when it does happen again, it does not happen for a number of days. He also does not complain of feeling weak when it does happen.

I’m not too sure what you mean by blood work exactly, but Dad had blood taken pretty much every day in the hospital and the Docs were very happy with what they saw in the results in the time after the PDT was started. Dad has always had a shaky right arm for about the last 5 years and like you mention, Parkinsons was something we had thought of. However, he spoke to his GP about it and was given tablets to try and help and they did. The way that used to look was that you would never know he had this, then he would pick up a drink of juice and you could see his hand shake as he took a drink. It wouldn’t stop him doing certain things such as eating and drinking, but you could see it when he did them. Now he is unable to write or sign his name like he used to do. I’d never thought of how the photofrin might be reacting with his nervous system as you point out so many thanks for thinking out aloud as you did! Maybe it’s a combination of all the drugs he has to take just now, he has to take 7 different types each day right now.

Many thanks to you both for your posts.

Best to you both.

Gavin