Reticence to talk

About me Introductions and personal stories
1

Hi Folks,

I was out bird watching recently when I met a chap who said he had been to speech therapy I assumed that he had maybe had a stroke, but no he was a fellow PD sufferer, although I said that I was also a sufferer of this disease he did not seem to want to talk about it.

The a few months ago I attended a meeting in Loughborough and no one seemed to want to talk there either, in fact I only spoke to one lady very briefly.

So I am asking this question of fellow forum members is every body ashamed of having PD and if so why?

All my friends acquaintances and family know of my condition, as I feel this is a good a way as any to improve peoples knowledge of the disease,helps them understand why some times I cannot spit my words out.

 

2

Its a mystery to me too.  I would talk about it to anyone who would listen. My problem is lack of listeners!

3

 

I talk too my fishing friends about it when they ask,but i wont wont push it down their throats,

 Really they have no understanding of it, to them it is something old people get or MJ Fox, they seem too think it is something simple a few pills will or could fix  there is a lot of stigma and Gov propaganda out there demonising anyone who is ill and on benefits.

so i'm not surprised  sufferers don't want too talk about it especially too complete strangers, the stares i get at check outs because i'm taking too much time or i look drunk standing or walking,or if i have too repeat myself over the fone or talking as my voice is quiet or slurry i cant push the words out or expand what i want too say.

 

4

I have recently been in hospital,nothing to do with PD,I was shocked that this was not ,took into account I was just left  on my own to struggle When I mentioned that I had problems getting in and out of bed . I was told I had walked on to the ward unaided. I was even 1 hour late with my medication, It needs to be made more aware in hospitals,I was  so upset.I totally agree with you  all luv  A4Ux

5

 

Believe it or not I belong to a parkinsons support group and everything else gets brought up in social chatter but no one mentions their parkinsons or their meds regime!! It's as if the problem does'nt exist, not many of my family/friends mention it to me either. I feel as if it's a taboo thing.

 

Sheila

6

Hello, nikobins and all!

When I was first diagnosed, I was among those who didn't want to talk about PD.  It wasn't shame keeping me quiet; I just had to assimilate the diagnosis by myself first before sharing it with others.  It's so shocking to be told you have a "progressive disease" that cannot as yet be cured and that will, therefore, continue worsening!  After a couple of weeks I had accepted the diagnosis and felt quite comfortable talking about it.

From that point onward, I've been like Turnip:  I'll discuss PD with anyone who'll listen.  I have even done some volunteer work with newly diagnosed patients.  And if I'm slow at doing something in public, such as getting money out of my wallet, I clearly announce that it's Parkinson's at work.  So far, I have never met with hostility or the inexcusable rudeness angel4u encountered at the hospital.  If I asked for help at a hospital and was more or less told to take care of myself, my response would be loud and unprintable, I'm afraid.

My best to everyone!    J

7

Thanks for your email that is how i feel we can help each other so much by talking about it Take care 

8

Hi Everyone,

Thanks for your replies and interest, I have not met any hostility, but was once laughed at because of my slow speech, however after giving the person an explanation he now shows concern instead.

I feel this is the way forward, and intend to shout it from the roof tops if needs be I have in fact told all the members of my local neighbourhood watch which i coordinate, and now I am getting used stamp from them to help fund research.

George

 

9

Hello all,

I was diagnosed 3 1/2 years ago and find some weird attitudes out there too. I have noticed how people don't want to talk about it.  Because of this I am reluctant to tell people and even now only family and some friends know.  Am I being a coward?  I don't know.  What I do know is that I can't stand the look on some people's faces when I tell them.  It is like I said I'm a mass murderer.  They just look at me in stunned silence.  I have been to our local support group with mixed results.  Most people first think I'm a "carer" but then when I tell them the carers in the group are almost too sympathetic.  I prefer the attitude "I have Parkinsons, it doesn't have me," I don't want to be treated like I'm under a death sentence because I'm not.  But at the same time I DO want to talk about it.  I don't want people to look at me as if I'm a poor sad soul.  Am I being unreasonable??

10

 

Hi smuggums (like your choice of anonimity names big grin), read my last post #5, I feel the same as you do, and no I don't think we are being unreasonable in people needing to understand what we have and what we are going through because of it.

Sheila

 

11

Hi Sheila,

Thanks for your reply.  I think my family and friends are afraid to talk about it, as though that would somehow make it worse.  I am a pretty positive person, but when I'm low it is nice for someone to understand why.  Maybe you can only really get this with someone who is going through the same thing. I think, three years on from diagnosis, that the best thing to do is be honest, be positive, live life and cry a little if you want to. I was amazed to hear when I was diagnosed that one in 500 people will get it.  There's a lot of us out there.  We need to stick together!

12

 

Too right smuggums! Stick together, and be positive, you have the right sort of attitude towards this horrible thing we are afflicted with.You will or should get a lot of support from this site. I attended the local parky support group today where I made a point of asking or just talking to other members about how they felt, and to my surprise they were all willing to talk about their own trials and tribulations to do with themselves about parkinsons, but it still does'nt tackle the problem of other people with out parkinsons taking an interest and talking about it to us. This is the what we are aiming for in the parkinsons awareness week.I was diagnosed a year before you, but I put off taking any medication until I really needed it, which was another year later. I was prescribed Ropinirole XL slow release of which I take 14mg once a day, they suit me well with not many side effects,but they don't suit everyone. 

Take care   Sheila

13

Hi Sheila,

I'm on Madopar 25/100 four times a day which suits me too, like you not too many side effects.  Not sure how they determine which one is best but I like my neuro guy and trust him. 

I wanted to say, I still get fearful, especially when I read some heartbreaking posts from carers.  Selfishly I think to myself, is that me one day?, even though I am assured by my consultant I'm doing well.  Anyway, I push these thoughts away and go unstack the dishwasher, cook supper, go to work.  That sorts it usually!!

Thanks for the posts.cool

14

Hello again smuggums

Yea we just have to grin and bear it, we're stuck with it and that's that. I said to my hubby (quite morbidly) I hope I die before get too much of a handful!!  He told me not to talk rubbish, he'll still love me....

I get tearful and fearful of what the future holds, but having said that, like you, I am progressing slowly so perhaps we belong to the group of fairly lucky ones! smile

Enjoy work......I retired last November, it's bliss.......

Sheila.

15

Shefinn & Smuggums --  That's right!  Keep thinking positive thoughts.  Why worry about a future scenario that may never come?  Remember, I have had first-stage PD for 18 years now!  My case is not typical, but neither is it unique.

J

16

 

Hi J

You've coped really well, what meds are you taking, if you don't mind me asking? I know when I was first DX the neurologist said not to worry too much as it could take up to ten years before it took too much hold on me.But it still does'nt stop you from wondering.

How is the States, hope the weather is good, sometimes we get  the tail-end of it!

Regards Sheila

17

Hi All,

Listening to your posts I too feel very selfish and think about myself and what's going to happen to me but it makes me feel so depressed and can't stop crying so I try to put it to one side and divert my attention to something like baking a cake or do some paperwork.  If I'm "off", I'll put my CD on to listen to a story borrowed from the library and do breathing exercises.

It's so hard to do when I'm "off" but I can only try. 

I do tell my friends what is going on but they get so emotional (the ladies) I end up having to say something funny to get out of the gloom and doom.

I do belong to a local Parkinson's group but never go to the meetings because I'm working but I retire next month so will hopefully have the time to go.

All the best to everyone.

Casie

18

Hello again from Oregon!

Casie, congratulations on your retirement!  You'll love it.  The gift of time is the greatest part of it; when you can use your time as you choose, it becomes a joyful freedom instead of a measurement for obligations.  Life begins at retirement, in my opinion.

By the way, your tendency to cry easily and to feel depressed can be a side effect of one of your medications.  I have forgotten which one it was, but one med made me very weepy when I first started taking it.

 

Shefinn, of course I don't mind your asking about medications.  That's one of the reasons this forum is so valuable: exchanging info about our meds.

My first med was Mirapex or Pramipexole.  It eliminated all my symptoms within a couple of weeks.  I'd noticed my shrinking handwriting, change of gait, lack of coordination, stiffness in arm and shoulder, inability to move my legs to swim. All were gone!  My doctor added Amantadine, but it didn't seem to have any effect at all.   I still take it anyway.  As soon as rasagiline (Azilect) came on the market here, my doctor added it as a way of delaying the progress of PD.  As my symptoms emerged again over the years, we increased the dosage of Mirapex.  I'm now at 6 mg. per day, the maximum.  The last med we added to the mix was a small dose of carbidopa/levodopa about three or four years ago, I think.

To these prescription medications I add otc supplements.  I am not sure which, if any, are helping; but since I'm doing so well, I continue taking them.  Why rock the boat?  My supplements are vitamin C, Ubiquinol (the active part of CoQ-10), oil of oregano, glucosamine (for my mild arthritis).  Because my case of PD began with gastric problems (gastroparesis), I also take Domperidone (Rx) and Omiprazole (otc).

You asked about the weather in the U.S.  While the East Coast is getting pounded by storms and buried in snow, we on the West Coast are having sun and very spring-like weather.  Temperatures are too warm for February, really, so we expect to have a cold March, perhaps with some snow.  The climate around Portland is quite similar to the climate of southern England or northern France.  It's a great gardening area!  

As always, I wish you well.

J 

19

                My wife who has PD dose not get upset and weepy since she as been on antidepressants,she started on 10mg went up to 30mg but is now on 20mg and they work. Also can anyone tell me what 1st stage PD is  and how many stages  there  are and how do you know what stage your at ?

                  Billywhizz

20

there are 4 stages. ignore them! they might never happen! concentrate on here and now.