Be careful what you wish for!!!

How I wished I cou!d stop working after I had a bad day at work. Well wish came true as I had an Occ Health appointment for work and not fit to return and going for medical retirement (am 55 in a few months). I was planning to continue working till 60 but not able to. Money will be tight but also I don’t know what go do with myself!! Feeling inadequate and somewhat lost! Anyone else in same boat?

I would suggest you find a PD gym class near to you, you make friends with people who are the same as you. Or what about just your local gym not PD orientated.

Also, I go to the WEA classes where there are courses on all sorts of things - I like the history classes, but like I said, there are all sorts of courses.

What about looking for a knit/sew and coffee/tea class. There are lots of things like that if you look around, Once you break the ice at one ‘club’, it is easy to join something else. And, they are not expensive - I am assuming you are female !! But a man has it so much easier, not only the WEA, but there is bowls (and for women), fishing, anything and of course there is also the ‘local’ at lunch - there is always someone there to get to know.

I know what you mean about money problems though. Why not get in touch with Age Concern - they will be able to advise you on what you are entitled to.

It is a bit daunting to begin with, but you have to get out there - it is so easy to sit at home and watch tv. If you do that, you will get depressed and feel even more inadequate.

Get out there - you would be surprised what there is. It will bring your self esteem back too. Let me know what you have done - I know someone who has PD and does just sit at home feeling sorry for herself. Life is too short and you have to kick PD in the but - don’t let it win, find a hobby, but what ever you do, don’t let PD win.

go, go, go……………….

Thanks for that. Sorry but what is WEA??

Yes, I guess I will have to make an effort, all rather daunting!

Hi, It means Workers Education - don’t be put off by the name - people of all ages and abilities go. I was introduced to it years ago before I was diagnosed with PD. Have done all sorts of courses, from painting to history.

The link is

At the gym, newcomers all say they were nervous coming though the door, and some say they were pushed to come by family. We do all sorts of exercising and even practical things like getting up off the floor, should you ever freeze and fall. We also have loads of laughs too which we think is as important as the exercise bit.

One word we have banned at out class is sorry - it seems it is the favourite word for anyone with PD !!! We have learned, that we have nothing to be sorry for. Daily, we fight this blinking illness so we are warriors and do our very very best to fight it - our physio who takes the gym class builds our esteem too, he seems to know if you are on a down day. Sometimes you don’t want to go but you do, you will come out ‘flying’ really does work and of course they say that exercise slows it down. It certainly does. One chap who was chair bound and then went on to walk 10 steps. He has moved away so we don’t know if he has been able to walk further. Another chap is doing a 25 mile bike ride to raise funds for Parkinsons he too has improved - don’t think he would have got there without the class. Do let me know if you do join anything. Another thing our physio says is that we are HIS inspiration and he uses us as examples to others.

Hi just wondered how you are getting along.

Its been a lovely summer so far. How have you been and if your retirement has happened. One of my friends along with her husband have retired. Her husband first and found he quite liked the time he spent alone doing just what he wanted to do and when. He had got into quite a nice routine. Then, his wife retired, and spoilt it !!! After all, she wanted to do things together and also walk and exercise the Puppy the have bought.

Her husband has found it extremely hard to suddenly share his time with her - he had got too used to doing things his way - even as far as eating during the day when he

She waves up all her grievances until she see’s me and then vents her spleen !!!

Morning. Not too good, bored stiff, depressed. Hope you well.

Sorry to hear that. Depression is a terrible thing. I know that first hand - my husband has suffered for over 20 years - I can often see an attack coming. In the early days, my local GP was brilliant - because my other half had mentioned to him he felt like going away somewhere on his own……… my GP arranged with me that I could call him and tell him how things were with my husband - he had phoned me up at work and told me to get home asap as my husband was talking about going away on his own - . Trouble is he left and moved away.

Please promise me you will seek some help - perhaps try your PD Nurse. But don’t just live with it on your own. People do care you know.

Things haven’t been good with me either …. My neurologist seems to have lost interest with his role - several people who see him who attend the PD Gym Club I go to have all voiced the same thing. I have some new symptoms that I want to speak about I emailed the PD Nurse 4 weeks ago and still haven’t heard from her so have booked an appointment with my GP. Only trouble is, she is not ‘up’ on PD.

The symptoms are drooping eye lid and muscle cramping. The neurologist said they have nothing to do with PD - BUT there on the leaflet in the med boxes both say these are side affects to the drug and tell your doctor or neurologist hmmm. I am also getting
warm glows (very mild)my stoop has got worse and the warm glows come on when I bend forward - more they too are mentioned as a reaction so wonder if I need to change my meds!!!

Now haven’t I cheered you up with my moaning ha ha.

Seriously speaking please promise me you will see someone about your depression - the other things you can change once you are not so depressed. That is the main thing to deal with I really do know from seeing my husband come out of the black cloud.

Please feel free to rant and rage to me, its all I can offer, but I mean it. You can say anything, swear, whatever. You are not alone, I can’t meet up with you but, I am here write to me say what ever you want. I won’t be embarrassed, I don’t condem, promise me you wont just sit there and get more depressed.

Years ago we were abroad on holiday and I sat in the shade reading when my husbands voice caught my attention, he was in the pool talking to a woman - I could hear him telling her things he had never told me about his depression. It turned out she was a nurse and worked with mentally ill people - she had picked up on his voice and conversation that he was depressed. I learnt from her the need to get depressed people to talk. She told me she had ‘worked with’ people on the Jamie Bulger case and cases like that - I have always been thankful to her. Sorry for going on and on.

BUT don’t deal with it on your own.

I have just read through my note to you. When I said he had left and moved away - that was my doctor not my husband ……………………

Bless you and sorry to hear about your symptoms. I am on anti depressants already, and am waiting to do CBT but waiting list horrendous. Can’t afford to do anything. Anyway due to see DBS Nurse on Friday so shall tell her. Hope you get help too xx

Look my friend, promise me you will ‘speak’ to me if you are realy down - I always check in early morning (around 5 - 6). So would be able to read any message. PROMISE me you will do that if you are down. Like I said, it doesn’t matter what the subject, what the language. Just contact me. Now I am being thick here what is CBT and what does the DBS Nurse do?

Yes, I do get down especially with this muscle cramping but, JD who takes the Parkinson Gym Class seems to instinctively know when one of us is down last Monday one if the chaps daughter was getting married JD let him practice his speech to us (we all agreed) as one of his symptoms his voice. We are like a family all there for each other.

My cleaner Mandy has just graduated from Open University - she is studying to be a Counsellor and is now going on to do her Masters so is always there to chat to me.

PROMISE me you won’t just try and cope on your own. I am here for you

Take care

Just wondering how you are. Hope the depression is beginning to subside a little. I often think about you.

Hope I don’t upset you with the rest of my message - on the other hand you might find it hilarious !!!

My visit to see the neurologist was a waste of time. As soon as I walked in his room I just knew he wasn’t with it and not in the least bit interested and I was right. I tried to talk about my PD as it is now and queried about the muscle spasms I have in my stomach. Even though I have found out from various people they too have these same spasms and are mentioned as a side affect of the meds I take, he cut me short and said my problems were not Parkinson related but he did increase my medication - last week I went to see my own doctor - she had received a letter from the neurologist but when she tried to call up the revised meds/strength to print me off a prescription to take to the chemists, there was no such pills or reference to the pills.

So am still on the original meds- still waiting for the Parkinson nurse to call (5 weeks now) - my GP said if she had Parkinsons she would in no way see the two neurologists in my area - she actually suggested I talk to the people who go to the same PD classes as me and find out who they see. So far of the 4 I spoke to, two see the 2 who I could/can see and the other two - 1 travels to Nottingham and one travels to Liverpool where they lived when they were diagnosed.

So Monday, I will again try and contact the PD Nurse to ask for help. I promise I am not pullig my hair out ha ha.

Take care, like I said before, hope you are on the mend depression wise.