I've only just found this forum and it's great to meet people who understand the issues PD brings us.
I've been getting increasingly concerned by my mood swings - especially the effect on my 21 year old daughter who lives with me at the moment. Wen i say swings I mean episodes of searing despair and desolation where I'm reduced to a sobbing mess. They really are unbearably painful and at the moment seem to be increasing in frequency - but then after a bit they go and I'm back to 'normal' which means I'm able to come across as reasonably capable, upbeat etc. (In other words i don't get corresponding 'highs'.) Does anyone else experience this. At the moment I have no drugs as the ones tried have had nasty side effects and no benefits. My neurologist thinks I don't have typical PD.
I'm dealing with the effects of a horrible divorce plus lots of other worries - eg loss of ability to work more than one day a week, fears re finance, inability to travel on my own(and no one to come with me)loss of future plans, fear of loneliness etc. At the moment I have a good social life and am involved in activities in the village where I live. I don't let people outside see the states i get into and I have repeatedly asked for psychological support to help me deal with the issues but despite excellent support from my GP we can't get a referral.
My daughter is getting very impatient and at times angry with me and I completely understand why. If I could tell her it was part of the PD it might make it easier.
Thanks for reading this
You must be mentally exhausted with so much going on in your life,Do you manage to sleep at night?I find when I am tired I can have a very short fuse,small silly things either make me snap and I shout at kids,or can go the other way end up in tears.If I do either I feel bad and say sorry and have a hug.I am very scared of being alone,but I don't think hubby will stay when pd gets bad.He doesn't cope now,when I ask him to open something or help me fill out forms or quick cheque to fill in,he says i'm useless and lazy.A few months back made a comment about when someone needs a commode its time they need to move into a care home.Things must spin around in your head,I know they do mine.I know a while back I was really bad,got a knife out and was going to finish it all,then door opened hubby and kids were back early.I sat on the kitchen floor sobbing so bad.I love my kids so much,big feeling of guilt,how could I have even thought about going through with it?'Kids need me.I went to my gp I was put on some antidepressants and spoke to a counsellor,both helped me.I'm off meds for depression now,I'm coping better,still frequently told I need to get a job,i'm useless.I now try not to let it effect me,in one ear and straight out of the other.I have 3 sons aged 9,11& 13 who need me and I need them.I still get times I can shout for smallest thing or cry.Guess having pd and not really knowing how we will be in a month,year etc is added worry.
You really have to push hard to see a counsellor,it really does help to talk.Even talking things through with a friend helped me.Have you thought of trying antidepressants,they don't have to be for long term.
Take care Dot xx
Your description of mood swings does sound like depression - although I haven't suffered deep depression, I have witnessed the devastating effects it can have on friends and family. It wastes lives but in most cases is curable.
The PDS have a publication on depression which you and daughter should find helpful (if you haven't already) - click the Home link above, then Publications, Information Sheets, Depression.
Each PD medication carries its own bundle of side effects and everyone reacts in different ways. My personal experience with one brand was very bad side effects with little or no benefit, robbing me of nearly two years of normality. Now on a different brand finding completely the opposite. I'm not sure what your neuro means by typical PD - the meds I found so awful are beneficial to others. The mantra here is we are all different.
Again, there's a good medication publication on this site.
On the front page there is the PDS Helpline number - don't hesitate to call for advice or help, that's what they are there for. I am sure they can help with the referral you desire.
As for your daughter who is no longer a child, possibly a little less understanding on your part and more on her's would help? I can only imagine how she must be finding life difficult with parents parting, and mum having PD. But she's a young lady now and must understand and support you.
Hang on to your social life, it's important. You say you hide the state you get in, hope you don't hide it from close friends.
And if you believe in yourself, you'll overcome the fears you express.
I've been searching the net for information about chemical imbalance and parkinsons,can't really find what I'm looking for.This is best I can find on chemical imbalance, its just general .It is thought that a continuous state of stress or agitation experienced over extended periods of time can force the brain to cycle through important neurotransmitters like Serotonin, Norepinephrine or Dopamine too quickly, creating a chemical imbalance.
Also hormonal changes can play a big part with mood swings,I know they do for me.
I have found making some me time has helped,listen to relaxing music,try and exercise ,even if only a walk its good for clearing my head.A healthy diet also helps,unfortunately I have been eating junk, comfort food,cant get motivated at mo.I know from the past when I have eaten healthy it has really helped.Also drink plenty.
I haven't really tried but there is also complementary and alternative therapy you could try,but before trying make sure you see a specialist in the field, and explain about parkinsons.Sounds like you get on well with your gp,maybe check with him to.
Take care Dot xx
Hi Dotty and Grey
Thankyou both for your generous replies.
I'm so sorry to hear of your experience Dotty and I recognise the complexity of the problem. From the outside it's very easy to say 'don't put up with being treated so badly'; from the inside it's much, much more complicated. I'm so pleased you are feeling stronger. Your children will be proud of you.
And thankyou Grey for your very sensible advice re depression. I think that it's a very likely explanation but, despite my GP referring me for support from the psychologist on the Neuro outreach team 18 months ago, nothing has happened - even though both she and the PD nurses keep uup constant pressure. She's now referred me to both the mental health services that cover our area but nothing is forthcoming. She thinks it's because the PD means I'm not 'straightforward' so they are reluctant to get involved with me because, you've guessed, I should be seen by the psychologist on the neuro outreach team. . . . .
The PD nurses have also tried to refer me to a new 'improved accesss to psychological services' iniative (IAPS)in our area but they just said no.(Not sure where the 'improved' bit came in.)
My daughter has told my consultant that I never ask for help and the fact that I now am asking is very significant, I have told him I'm at breaking point . . It makes me wonder what you need to do to get an appointment! (Sadly I suspect I know)
Ironically when I was first diagnosed my then consultant refused to believe I wasn't depressed and sent me for a psychological assessment which reported that I was extremely resilient and well adjusted. I think this may now be working against me.
It does seem a bit dire that the NHS can't seem to understand the need to provide psychological support to people dealing with PD. I'm sure it could be very cost effective.
Many thanks again for the support; it's nice to feel someone is listening.
Just seen your second message; thankyou so much. And YES!! I do eat total rubbish - not unusual to exist on three slices of toast, two freddos(Chocolate frogs - lots of 5HTP, precursor of serotonin ; that's my excuse anyway!) and a couple of biscuits per day. I've been making more of an effort because my 'intelligent' self knows I should but at the point when I need to organise a meal I often just can't be bothered and toast is so easy! I also know I don;t drink enough liquid - but then there's the bother of constantly going to the loo!
I realise that it's probably because actually I'm almost past caring what happens to me , though luckily I'm good at disguising this in public. I really wish I could get a sensible regime going. I've contacted chewexpert and I'm very interested in his PiP. Normally - or perhaps I shoud say 'in the past' I was a highly motivated enthusiastic person so I'm hoping to find some of that again and organise myself to stick with the PiP programme.
Depression and anxiety are often the first symptoms of Parkinson's disease. Prior to diagnosis i was diagnosed with an anxiety disorder and depression but unknown to me and the health professionals i was in the early stages of Parkinson's. Because Parkinson's changes the brain chemistry it not only affects the body but also mood and thoughts. Depression can affect the way one eats and sleeps, the way one feels about oneself, and the way one thinks about things. Depression is not the same as a passing blue mood. It is not a sign of personal weakness or a condition that can be willed or wished away.
When my depression was at its worse i couldn't sleep, would wake up around three or four in the morning and then when the alarm went for some bizarre reason i could sleep. I think it was because i didn't want to get up and face the world. I often would feel quite happy and then all of a sudden burst into tears and would be inconsolable.
Depression is identified by a combination of symptoms that interfere with the ability to work, sleep, eat, and enjoy once-pleasurable activities. Mood swings can present as a persistent sad, anxious, or "empty" mood or even irritable often causing loss of interest or pleasure in hobbies and activities that were once enjoyed. This may include lack of interest in eating, social interactions, exercise, or sex. I became very withdrawn and found it very difficult to come in contact with anyone. I started having panic attacks and before i knew it i felt extremely vulnerable and lonely. Feelings of hopelessness and pessimism, guilt, worthlessness, and helplessness, decreased energy, fatigue, and being "slowed down" can come and go through ones day. I found it difficult to concentrate, remembering, and making decisions. Like dotty, thoughts of death or suicide crossed my mind and i even attempted suicide. One night i found myself down stairs at four in the morning with a knife to my wrists another time i swallowed a load of pills but fortunately my partner woke up and made me vomit.
My stomach became very upset, i experienced terrible IBS, chronic pain and backache which didn't respond to painkillers. I was referred to a psychiatrist who assessed me and diagnosed chronic fatigue/overlapping fibromyalgia. I was put on a course of amitriptyline but this unfortunately didn't help me and i become more withdrawn and isolated, didn't want to face the world. It was then that the psychiatrist diagnosed an anxiety disorder and depression and suggest cognitive behaviour therapy. This gave me the skills to understand my feelings, thoughts and behaviour and gain control of them. Sometimes though the chemical imbalance needs correcting and this is where medication is often needed.
Eventually after six long years of being pushed from pillar to post due to developing a resting tremor Parkinson's disease was diagnosed. I tried a few different medications for Parkinson's and once i got on the right combination the depression lifted.
Parkinson's and depression come hand in hand and is it any wonder when living with a chronic progressive illness. But i believe knowledge and sharing experiences with other people with Parkinson's helps us to become stronger and able to deal with the forever changing challenges that Parkinson's can present.
Welcome to the forum Wobbly and i hope you find the support and comfort i have found from exchanging and reading posts.
Wobbly, might I also suggest grieving on a big scale? You are not only 'losing' your husband but also your previous life which included health. It is terrible to have to come to terms with the thought that you may never feel/be healthy again, and I think everyone on this Forum would know what that's like. Don't worry about crying, it's good for you, and it will stop. And I also think many on the Forum would back me in saying that one day you WILL feel better, hard that may be to believe now.
Thankyou, Tamsin, for such understanding and wise words. You are absolutely right; I am devastated by the loss of my 'old' way of being and am very, very unhappy. But thinking about it, it would be peculiar if I could make the transition without missing a beat. I take great heart from your assurance that things will improve. Thankyou for taking the time to reassure me.
With very best wishes
Best of luck with chewexperts PiP programme,I know its hard but I'm sure you can do it.Remember,YOU ARE WORTH IT.
Take care Dot x
ps.I love freddos to lol