It may sound a bit drastic but it probably is the best and only way I can describe how I feel, I feel like I have lost my joy I feel I have become emotionless and I don’t like it. I have always been a glass half full person, always tried to look at the positives but recently this is not happening and I don’t know what’s going on and why. This is really starting to impact on my relationships and my well being. Have met with local mental health team to talk about CBT and I can see where they are coming from but I just don’t think that’s it or the answer. Has anyone else been In this horrible place?? how did you get yourself out ??
I’m really sorry to hear that you’ve been feeling so down recently.
Based on the information that you’ve shared, it sounds to me that you may be going through some depression and if that’s the case, with the right help, support and treatment you can overcome this. It’s great that you’re already using the forum for peer support and although CBT doesn’t seem to be working for you, there are a range of other options available to you. There’s counselling, exercise and antidepressants to help improve your quality of life - we have more information on depression on our website here, https://www.parkinsons.org.uk/information-and-support/depression.
We also have around 356 Parkinson’s UK local groups throughout the UK. These are run by volunteers who usually have experience of Parkinson’s and are supported by Parkinson’s UK staff. For more information on this and to find your local group, you can visit our website here - https://www.parkinsons.org.uk/information-and-support/local-groups.
Our helpline and Parkinson’s local advisers are here to answer any questions you have about depression so feel free to call us for a chat on 0808 800 0303.
I was feeling like that then I tried water soluble cbd. My mums dementia was getting exhausting and parkinson’s diagnosis and symptoms were leaving me very low. I have been on cbd for well over a year now and while it didn’t do much to help with parkinsons it lifts my mood considerably, the world is a bit more colourful and I feel more alive.
Thank you both for your response, I have restarted my Cbd oil and I am writing a weekly time table…
May sound a bit school ish but I’m thinking it may help and give some order, as sadly it is lacking, for me anyway.
I have always worked better with order and organisation I don’t like things messy and I have found that this trait has become a little more extreme if I allow it to so having to find a good balance. A friend told me that maybe I have lost myself because of feeling overwhelmed with other family issues and that unless I re find my happy place and spend time on myself it will not resolve, so I’m off to do my thing for a while albeit slowly than I used to X
Really sorry (but not at all surprised) to hear that you’ve lost your joy as you describe it.
I won’t type the whole story here but in short, my hubby lost his sparkle after being diagnosed and has now got it back thanks to a great support network, the right medication, a good Counsellor, a mild anti - depressant, Physio, an AMAZING Personal Trainer who specialises in PD (and has it himself).
This is the shortened version but if you want to know more, I’ve just typed our story in response to someone else and you can probably find it by using the search function.
Please don’t suffer without trying to get help. There is a lot of help / support out there if you know where to look and are open to trying various things until you find what works for you.
We’ve got our lives back and I’m so grateful for this.
If taking cbd i highly recommend water soluble, only 20-30% is absorbed if oil, no matter how you take it. Water soluble is nearly 100% absorption, so less does more. also you must leave 90 minutes before and after CBD before taking any other meds, CBD tends to take up the liver enzymes exclusively so any other meds may not be absorbed if taken at same time, also taking too much can cause anxiety. I am on 2 doses of water soluble cbd, 6 drops each, i have it in coffee but any other drink will do.
Thank you for suggestions, I was not aware that you could get water soluble Cbd oil can I ask where you found it and what strength do you use ?
It has been nearly 12 years since diagnosis at 47 years of age and I think well, no I know I have been extremley well controlled and my life has trundled along quite nicely but this past year I have felt such a change.
I had to stop work, that’s another story really, but it was time, so financially a huge loss, I didn’t appreciate what a loss socially it would be and just how long days can be. Some days I feel full of energy motivation, I just can in body and mind but then the next day or so I just can’t. Today I feel very dizzy and wobbly on my feet I was going out but I know driving not the best option when I feel like this so at home and grand daughter now coming to me, I just feel it’s creeping up on me somehow
Exactly what has happened to me newdidit. Was dx 12 years ago and managed find, however this year it has hit me, going for medical retirement and lost mojo. Days drag, try to do stuff. Hard.
P.S. I too am awaiting CBT but waiting list horrendous and don’t think it will help bjt willing to try. Hate feeling like this.
I use a company called simply cbd, its cheaper than other companies and have researched where they get there water soluble (dutch natural healing), most water soluble in uk is made there. i get this one - ‘SIMPLY CBD ENTOURAGE AQUA (4%) WATER SOLUBLE PUMP’
They are considerably cheaper than other recommended companies, you get it with a pump top that deliver 0.2 ml of cbd, but i use a dropper top (4-6 drops) instead as the pump top gets spluttery.
If you do purchase a bottle I use pipettes to get the last bit out of the bottle, there is often over 20 doses left! but you must take it with 90 minutes before and after other meds.
Greetings, I too have this problem although I have lived with depression since a boy so I cannot blame it all on the jolly Mr Parkinson.
Sadly I cannot offer a solution but I do know that you have to fight every day here is my latest strategy…I have taken up sailing, did you know that boat owners need crew so if that sounds any good check out WWW.BOATBUDDYS.co.uk. Now I love bodging about and I’ve recently discovered “MENS SHED” it’s where men and ladies who like making things, repairing stuff and generally bodging about, get together share tps and skills…and I hope make friends and have fun…in a shed all kitted out, so check out WWW.mensshed.org.uk and read all about it. Chin up lets find that happiness and joy again we owe it to ourselves and our families. Best wishes and keep buzzing.
I feel exactly the same. Was always full of life, laughed easy, always had something to say, talked to anyone and everyone. NOW I really have to work at everything, get fed up with people askibg R U OK because im quieter. I FEEL THAT NO ONE REALLY UNDERSTANDS. And why should they. YOU CANT SEE IT-ITS MENTAL. I’ve had it 5 years but its now effecting all my life and I’m struggling. I live alone but have a lovely son and some wonderful friends BUT they dont understand. We’ve never known anyone that has had parkinsons.
A warm welcome to the forum.
The great thing about the forum is that you’re sure to come across people who know exactly what you’re going through and they definitely understand. In addition to the forum, we also have local groups across the UK where you can meet and socialise with other people affected by Parkinson’s.
Generally speaking, meetings can be informal - a chance to talk and discuss worries and experiences - or may include a presentation by an invited speaker, such as a healthcare professional or complementary therapist. You can search for your local group using lookup tool here - https://www.parkinsons.org.uk/information-and-support/local-groups.
Lastly, our helpline is a free confidential service providing support to anyone affected by Parkinson’s, you can speak to one of our amazing advisers if ever you feel alone and someone to talk to. Feel free to give us a call on 0808 800 0303.
Forum Community Manager