Canabis oil

Hi @cruisecontroller,

We have spoke previously before in regards to Deep brain stimulation…Neuroligist said not at the moment, and maybe in the future. My mum does have the option but I feel like its too much for her to go through and I personally don’t think she likes the idea of it…

In regards to CBD Oil, my mum has taken a few off different names, different Mgs and %.
The best way to take these oils is to spray it in your mouth or droplets under the tongue. Let it settle for a 2/3 mins instructions on the bottle and there you go.

How is this oil helping you? My mum ready feels very hot and the cbd oil we gave her was also mixed with normal virgin oil what makes her feel very hot. She not taking any cbd at the moment.

When I get home tonight ill take some pictures of the oils my mum has used.

Hi, Sasha, thanks for responding. What i’m on is a 3% strength oil and had been doing 2 sprays 3 times a day. As I said in my earlier post it did seem to help with my getting to sleep but not with my tremor. I upped the dose on Monday to 4 sprays in the morning and the same an hour before bed but still no impact on the tremor but I was experiencing pain in my left side of my waist and whether it was the oil or not I don’t know but it does seem to have gone off. I will know more when the bottle runs out, if so then my next bottle I will go to 6% and try 2 sprays morning and night and see if that helps. As I said in my earlier post the oil i’m using is called Natures Oil and comes through ICE Headshop.

I have got an appointment(annual check up) with my Neurologist on Tuesday to see where we go from there. Since having the battery changed my Dystonic Tremor is more prominent and I have upped both settings by half a point but don’t want to totally mess it up by going too high.

Regarding DBS, it is a scary thought and very daunting but well worth it in the end so long as you don’t have another tremor like me !! Also that your Consultant listens to what you’re saying !! We intend doing some dictation to my Neuro man so as what we are saying goes on my record as not only is the Dystonic Tremor very much in evidence I am shuffling more when I walk and my speech is not what it could be, thank goodness for keyboards !! I will get back to you after Tuesday. Have a great weekend.

Les

Hi again Sasha, I went to see my Neurologist yesterday and said about using CBD Oil and he was fine and told him that I had been using it but that it wasn’t helping with the tremor. With that in mind i’ve not bought any more. Having told him of my problems he suggested that rather than go all the way back to Cambridge to get another opinion he is going to try and get me back into Bristol where Dr Whoan is located to see if his team can offer up some help with my condition as I am resident in the South West. In the meantime he has upped my daily dose of Madopar to 1250mg(5 x 250mg) a day to see if there is any improvement. He said he wouldn’t make anymore adjustment on my DBS. He did suggest trying a low dose of Tryhexyphenidryl which as we pointed out to him we believed that this was the one that sent me off the rails before but we said that we would contact him when we were able to confirm this.

Les

Hey @cruisecontroller

Thank you for responding back to me. Its good you told your neurologist about CBD oil at least they know you was trying something different.

How do you feel with the increase of you madopar? I think my mum is taking it 5 times a day atm. Everyone body and Parkinson’s is different at different stages. I will do some more research into DBS because I remember the first time we spoke you mentioned if it wasn’t for DBS you wouldn’t be clicking away on these keyboards!

Its been a pleasure speaking with you, I wish you all the best in the future.

Sasha, as i’ve only been on the higher dose of Madopar for just a week it is early days yet but will let you know if there is any significant difference. As you say, everyone who has Parkinson’s is different in many ways, very few are the same. Regarding DBS, it is good to do research for your own peace of mind(I had mine done at Addenbrookes Hospital, Cambridge under Mr Colin Watts, Neurosurgeon. Dr Philip Buttery was my Consultant). I was given a four page Information sheet to read produced by Parkinsons Disease Society. Before my operation the procedure was shown on tv and I was determined to watch it !! My wife said,“Are you sure ?”, I said,“Yes.” I did watch it on two separate occasions, different people, I believe one was in USA !! Remember, I had two tremors, the Dystonic which has been about me since my teens and the Parky one. Come the day before the operation as I was waiting to be admitted, the scaryness/daunting of it all hit home and I did break down in front of my wife. Come the operation I needn’t have stressed so as when it happened I didn’t know anything about it, if anything I was feeling gung ho and positive in attitude on the day. The DBS has helped no end with Parky in fact after the operation I was a different person, no longer was I wobbling like a jelly !! DBS has given me some sort of life back,

Six years on and having had the battery changed(March 2018) and am now under the control of an i - pod but back in January I noticed that a tremor was back in my hands which is one reason for seeing my Neuro Man. I now need for the Dystonic side to be sorted. Take good care of yourself, you know where to find me should you need to talk further !! All the best.

Les

Tried it,no good for me,it has no side effects,bye.

Having seen my Neuro man he has suggested a couple of drugs, one of which I have had that being Trihexiphenidyl which sent me right off the rails !! I wasn’t the same person so I am trying Clonazepam and these appear to make me drowsy, I have only taken two in two days and will continuue to do so for the next fortnight when i am supposed to go up to three a day. Whether or not they help with my Dystonic we will see.

Les