Lack of understanding about PD


#1

When I meet some one and they ask how are you you're looking great it's usually a long drawn out affair.

my tremor at the moment has all but gone , thanks to right meds dosage.

what folks don't see is sitting on the toilet with severe stomach cramps.

night sweats at the deep end

night time paralysis 

overwhelming fatigue

fingers and toe cramps which are excruciating 

falling in the street

folk thinking you are drunk

I just wish more was explained to the public that PD is not just a tremor

 


#2

Hello gcy

     There will be many of our friends here on our Forum will know exactly what you mean, for instance, I cannot touch any form of alcohol but I can eat, a few weeks back my daughter took me to one of our local Pub/ restraunts for a meal ,I only drank orange, but after 30 mins I started to panic, as I often do in crowds, I told my  daughter and son in law I had to go ,as the panic grew worse, my blood pressure dropped and I followed, down on my knees in a crowded pub, Great not in anyway embarrassing no no  not at all, I could hear people saying "Disgusting cant hold his drink" and worse, this whole episode was so terrifying and then old parky decided he would take a piece and I shut down 85%, I had to be carried to the car. I have not been  back as I do feel ashamed, no one had any Idea what was happening to me, my daughter was asking for help  but only one young lady came to my aid, she was a district nurse and could see it was not the drink causing me to  shut  down, she thought I was having a stroke, so yes my friend I understand your frustration but  as the saying goes Dont let the B""""""d get you down

                                    Kindest Regards                   Fed


#3

Yes i can relate to that  most of my family and friends are aware i have pd , it was just after my diagnosis and i was feeling pretty low trying to come to terms with pd  so my cousin suggested a night out  , i became aware of my cousin staring at me  when i asked her why she was staring she said  ' your hand is shaking' to which i replied  rather sarcastically ' is it  really , i am so sorry  i will  ask it to stop ' she took the hint and apologised ..you really have to develop a thick skin with pd many times i have been in shops and people stare when they see you shaking  , or the person behind you in the queue is getting impatient because i cant get my money or debit card out of my purse quick enough, i now take no notice  my son on the other hand is far more outspoken than me and he will turn round and ask people what  they are staring at a trait he inherited from his grandmother neutral

Fed you should never feel ashamed , the ones that should be ashamed are those with a total lack of understanding and those that are so quick to judge without knowing the challenges that we go through on a daily basis


#4

Hi gcy

 

for me, the problem is pd is one of thousands of diseases of which the public are ignorant. but if all the organisations try to educate the public at the same time it might test the public's threshold of learning. only 1 in 600 get pd, why should joe bloggs care? it important to us - but not to the rest of the world. and how much do we know about MS or schizophrenia or bi-polar? i agree it would be a better world if we all understand each other's diseases, but is that likely?

i've posted on this before and its not generally been popular! can't think why


#5

I think  joe public look on PD in the same way as they do with UFOs and the Loch ness thingy , they have heard of it but never seen or had any involvement with it so behave indifferently towards us, its a shame but a fact of life, folks dont concern themselves about a large meteorite crashing through their roof until it happens.

                                       Happy New Year , maybe a cure this year             Fed


#6

 

 

I experienced my first near collapsing session just before Christmas. It happened in front of my grandsons class of eight year olds at a grandparents afternoon . Sat there wondering whether to move or not without causing alarm to the children, we waited until the children were engrossed in their singing then my hubby guided me out, horrible to experience! went to GP and he said my blood pressure had dropped and was feeling a classic case of fainting, if it happened again I was to lie down on floor even if I was in the middle of M&S (which made me smile). He then explained if I had fainted someone might have thought I had had a heart attack and started ressucitation on me ending in breaking my ribs with the pressure.

 

I agree that more should be known about PD by the public!

 

Sheila


#7

Hello  Shefinn

     Thats a good screen name but if you dont mind I will address you as Sheila, its my cousins name? anyway Im off track again, the awful situation you found yourself in happens a lot with PD some of the drugs taken to combat parky lower your blood pressue, and all of them have unwanted side effects but what do we do, its essential that the right combination of medicine is given  or we would be totally  immobile , I have tried every drug  available to slow the advance of PD but its not until I was lucky  enough to be offered Duodopa that I have stabilised, even the blood pressure problem has cleared up, hopefully a cure will be found soon and it  will give all who suffer the pain embarrassment and indignity associated with BLACKHEART, the blessed relief we so desperately long for.

                         I wish you well in the coming New Year Sheila and hope you soon put the blood pressure

                         problems behind you  Kindest Regards                Fed

              


#8

Turnip

i don't disagree but I don't have MS or schizophrenia ,

we live in a very selfish world and I have had the experience of folk thinking I am drunk, I recently began to use a magic mobility scooter

it was amazing I became invisible going through the shopping centrebig grin


#9

 

 

Thanks for your post Fed, what happened with my BP was the fact that I was taking tablets to lower my BP(because I have been treated for high BP for twenty years) but was'nt aware that the ropinirole XL also lowered it, and no one told me that I would have to alter my dose, but it has been sorted now thanks!

To explain my screen name it's partly my christian name and partly my surname!

 

Cheers Sheila


#10

Good morning Sheila

                           I hope you are safe from the battering Mother Nature is handing out, and I am pleased you have sorted the blood pressure problem, I also had BP problems caused by my drugs but ok now, it did  create a few problems at the time, the worst involved a Emergency  Ambulance and a unwellcome  two day stay in N T G H  I  had been on the way to the bathroom in the early hours( these things always occur  early in the morning)  and I collapsed if I had fallen to my right instead of left I would have gone head first down the stairs as it was I had split my head and was severely concussed and to this day have no recall of the trip to Hospital even though I was chatting to the medics ,or when I was admitted when my wife had to give my details as I could not remember my name or address, I did not know my wife or sister it was very upsetting. but its all in the past now and we have to go forward, so take care Sheila. Kindest Regards.

                                                              Fed

 

 


#11

 

Hi Fed

 

Sorry to hear of your problems with your BP and hope the experience did'nt traumatise you too much, i've not had too much trouble with my BP all the years i've had it, not until I started my PD meds, sods law is'nt it.

 

Changing the subject, going back to my screen name I never thought I could have called myself KITCHENER because I work for a catering company, ( well they accomodate me put it that  way) until I retire!! 

 

Regards Sheila