Frustrated


#1
Hi everyone, Just wanted some feedback if anyone can spare a little time. I don't come on here very often, don't know where else to look. I am 45, diagnosed 5 years ago. I have seen my Pd progress a frightening amount during that time. I work for myself, 6 days a week most weeks. Over the last 6/12 months I have felt a big change in mood and motivation. I get tired loads, have lost interest in most things, and when Pd is really bad all I want to do is sit still and do nothing. I confront everyday with a renewed positivity, but after a while of trying to do what I used to do with ease, I get angry with myself, embarrassed in front of others and frightened for the future. My nurse wants me to take a dopamine agonist and some mood enhncing drugs but I just hate the idea of introducing more chemicals. I take Sinamet plus 5x daily at the mo, they help a little, but I look forward to a drink most evenings as this helps me relax and stop shaking and feeling anxious. I am married and have a daughter, we never talk about it anymore because it creates friction because my wife does most things for me already and gets more angry than I do. Feel as though I am in a world of my own, quite sick of it. Anyone been here? Has anyone felt the same mood dips? I do not know anyone else with Pd, and I am now sure the only people who understand Pd are those with Pd. Anyone that can offer any good advice at all would be massively appreciated. Thanks for listening!

#2
Hi Chrs 10.This is pretty sh.. this PD. I agree that you have to have it to know what its like. you cannot explain how you feel most of the time.I cant give you any answers.I do hear you Regards Angel

#3
hi Chris
Sadly this is how Parkinsons makes you feel. Everyday is a challenge and how frustarting it can be.
It is just as difficult for partners of those living with PD . I get fed up and have my good days and bad, chin up .........


Thinking of you love PB x

#4
Hello Chris 10,

Yes I have been there, many times. The lack of interest in things that used to consume me, the lack of motivation and energy are particularly hard to bare (or is it bear?) I do understand your reluctance to introduce yet more chemicals into your body, but maybe your nurse's suggestion of something which might lift your mood may be worthy of consideration? It need not be long term. Just a short course may do the trick.
The only other alternative that I can think of is to join your local PD group. This sort of thing does not suit everyone (myself included), but you maybe could give it a go. It might be just the thing for you, especially as you are finding it difficult to talk about how you are feeling re PD within your family unit.

I wish you all the best

#5
Hello Chris 10

I do think that meeeting some other peewips is a good idea. It is not easy staying positive on your own. Some areas have meetings for family members, it might help if your wife and daughter had people to share with, the isolation is bad for them too. And, of course, you can always come here, let off steam, be angry or be silly everything is forgiven.

#6
Hi Chris

Unfortunately PD is extremely hard to cope with and I don’t think anyone who hasn’t got it has a hope of understanding. I agree it causes friction and puts pressure on the whole family. I got very ill on Requip XL and I thought PD was bad enough so be very wary of taking anything else as your brain is extremely sensitive because of PD.

Best wishes.

#7
Having just undergone a bout/batch/course (whatever) of cognitive behavioural therapy (CBT) with a clinical physocologist, I cant advocate it highly enough. The brain is a sensitve miraculous device. I was getting down for longer, the mood swings more severe, angry and frustrated at myself and others, especially at those least deserving of it.

I went to the GP who wasn't too keen on prescribing anti-depressents as just about every one had some sort of reaction with PD meds. I was referred to the local rehab team - which consists of an occupational therapist, dietitian, physio and a clinical phychologist.

Each one was a help. The CBT was exellent. Even the strongest athlete needs tecnnique to excel in their sport. Our brain, our thoughts are what makes us, we need it them working for us and CBT helps by giving us coping techniques and ways to challenge those thoughts and feelings which drag us down.

The bad thoughts and feelings still happen, they just get dealt with faster and don't linger.

#8
Hi Chris 10
I am 53yrs old and have had PD for nearly 5 yrs and at 1 month later I was diagnosed with breast cancer,:cry: a very sh***y year ( excuse my language) but I battled through I had 10 months of work and returned to my job as a practice nurse , well you are probably thinking Oh she know's things to do with PD. Yes I do each PD is unique to each individual person what works for one does not work for others and you will have the dark deep moments in your life I have been there and foolishly I thought I was doing well, oh no was i hell doing well. Each time i saw my neurologist there was a new problem each time he prescribed new meds from sinemet to stalivo to requip to apomorphine sub cut infusion I had sensitivity to most from swollen legs to shortness of breath etc etc etc. I am now on 41 tablets a day AHH yes I am a walking chemist but again they are not having the desired effect.:disappointed: so the next step is surgery OMG I am going to discuss and get info because i am not sure if I need this yet.Yes I have problems and my family have taken the S**T i have dealt out at present I am having Rem sleep disturbance screaming and thumping my husband :rolling_eyes: who some times wonders if I am really a sleep TEE HEE,so you see that is me . Now your wondering why i am starting to depress you well here is the thing, there is a life for living out there and I am living it and will live it even if i become wheel chair bound no Bl***Y disease is going to stop me that's fpr sure. As for my family well I do not know some time's why they have not run away but you see we have talked about this I pour out my thoughts and anger and worries and they do the same I have 2 daughters aged 28yrs and 30yrs and boy have i put them through it with there dad many a time but they come back and they scream and shout as well then we laugh and cry them we spend money or eat bad things like cream cakes and cookies and all the bad things get kicked in the corner and that is were they live until they want to get naughty and come out and get us again.You sound depressed and that is not good your family sounds as if they want to scream and run away do not bury your head in the sand get help try a anti depressant it may be short lived get help for you and your family if you have join PD UK they will be able to direct you to help with family support and may be counselling or may be you need to do as i do get every one to sit down and vent there thoughts and angry and tell them to scream if that is what they need ( but for god sake warn the neighbours so the police are not called) i can go on and on but i think you have probably had enough of me and your eyes' are blurring so good luck and don't be afraid to ask for help

#9
Dear Eck,

I am so pleased that you have found CBT helpful. I am a great believer in it - another way of looking at things e.g an invitation to a party may produce such feelings as " oh heaven help me, what shall I wear, will they like me, will I cope?" or alternatively.
" how nice to be invited, I may meet some interesting people, I may enjoy myself and if not I can always leave"
Unfortunately, I am not very good at putting this into practise, and my understanding is that practise is the key?

#10
Hello Chris10,

My husband has had PD for thirty years now and is almost 69 years old so we have been through the various stages of pd and the difficulties it brings to family life. Please think about CBT as I feel that everyone with pd really would benefit from some help to be able to adjust to the diagnosis of this very complex condition.
If yourself and your family did feel that they could join a branch it would help, also there are groups for early onset pd, it is so much better if you could meet people that are going through the same difficulties as you for both you and your wife.We made many friends and have had some really good times with lots of laughs along the way so give it a go.
best wishes
vivian

#11
Thanks ever so for all your replies, just being understood makes a huge difference. Love to all, Chris.

#12
Hi Chris, been diagnosed for 2 year and am aged 51. I increasingly feel this apathy, flatness and just wanting to sit and do nothing and find this one of the hard aspects of PD. I think the emotional side of the condition, the having to get up every day and cope with it whilst living your life is wearing and draining. Some days you cope with it better than others. LAst year was my 50th birthday, Silver Wedding and daughters 18th...so we planned parties, trips out etc and found that this really helped...having planned good times to look forward to. So doing the same this year. Because of critical illness, we have been able to by a Vw camper and go away in this, just overnight to local campsites. ALso have learnt the ukulele and joined a local club. This has been fantastic...my tremor stops when I play. Anyway...keep on living. Take care