Am I getting worse


#1
Yes, PD is a progressive disease but just of late i've become quite concerned and i don't mind saying frightened by my sudden onset of symptoms. I've started choking on my own saliva and often find medication is getting fast in my throat causing me to cough and bring it back. I know there are other alternatives, dispersible forms of medication and little tricks like putting medication into yoghurt to help swallow it but the issue i'm looking at here is am i advancing into the next stage at a pace i'm finding quite alarming? I've been referred to a speech therapist and am waiting for an appointment to come through.

A few week ago i was watching a programme on tv when all of a sudden i started choking and although i feel quite embarrassed to say, i lost control of my bladder and had a little accident. This as happened a few times since. I've informed my neurologist and he wants to see me again in a few months time to monitor it. I'm wondering if anyone else is experiencing similar symptoms?

I've also noticed i'm forgetting to swallow and find myself panicking because i can't swallow. I know i'm probably making the situation worse because of the raised anxiety levels but it is so bloody frightening.

I also feel my breathing is starting to become more shallow and i find myself coughing and sighing.

I know people are now able to see the effects of Parkinson's on me and quite honestly i've learned to accept that but seeing myself in the mirror the other day while engaging in a telephone conversation made me realize how i now hold my left arm and how my voice is starting to become quite monotone.

Sorry folks, just posting my thoughts and anxieties. I know we're all in the same boat and there are many folk experiencing much worse symptoms but sometimes it's quite overwhelming.

Cutiepie

#2
hello cuitipie - Sorry to hear that you are struggling , I know exactly how you feel and it is very very frightening I wake up in the night choking and some times in the early hours of the morning and I am actually physically sick. Now when I go to bed I take a bowl with me to leave by the side of the bed.I have my tonsills out on May 11th and I am scared to say the least incase it makes it worse, I am in two minds to cancel but I`m also having a biopsy of the cyst that is in my throat and the Doctor and consultant say that it needs to be done. As you say it is better if you try and relax and not to think about the swallowing and your throat but sometimes this is easier said than done. Have you tried having just tiny tiny sips of water? Also practising your breathing and as I said before just try to relax. As for bowels and bladder - well they are all over the place. Hope things pick up for you. try and have a good Easter break - take care and very best wishes.

#3
Sorry cuitipie - got the spelling of your name wrong

#4
and again - I think my brain is funny today as well - should be cutiepie. Love speedy

#5
Hi Speedy,

Thank you so much for taking the time to listening to me moan. Sounds like you're going through a tough ordeal yourself. I had my tonsils out when i was ten years old. I remember it well, not memories of pain but it being bonfire night and i recall listening to the fireworks while laying in bed recovering, lemon moose springs to mind too, didn't taste that good i recall but soothing to my throat. I can well understand your anxieties but i would strongly think about not cancelling it, easy for me to say i know but you've got to think about how you will benefit in the future from the operation.

I don't tend to suffer with my bowels but am having problems with my bladder. When i was on the dopamine agonists, particularly ropinerole i recall having terrible bowl and bladder spasms, to the extent i couldn't even sit down because i was in so much pain. I ended up at A&E and had to have an injection in my bladder to relieve the spasms. Since I've been on sinemet i find the urinary retentions gone the other way and now i'm almost running, so to speak in order not to embarrass myself with an accident. When i first introduced sinemet i was on sinemet plus but they caused extreme incontinence to the extent i had no control over my bladder. In desperation i cut the sinemt plus in half and took them more frequently though the day, this seemed to help quite a lot so then my gp prescribed sinemet 62.5mg 6 times a day but i managed to reduce the sinemet to 4 x sinemet 62.5mg by introducing selegiline 1.25mg and this made a world of difference.

In fact i made a boo boo this easter holiday regarding my repeat prescription. Not realizing the chemist would be closed for good friday i fell short of selegiline. It made me realize how effective selegiline is in my drug regime. I found myself having to take sinemet a hour earlier and i had much less a smoother day. Wont do that again, not if i can help it any way.

Don't worry about my spelling of name, just put QT, its easier.

Best wishes
QT:smile:

#6
Oh and thanks for the tips about swallowing and breathing. I will try sipping water. Anxiety and stress certainly do play a role too but i think understanding this helps because at one time i would of had a full blown panic attack

Have a lovely Easter

QT:wink:

#7
Hi qt (thats easier)

Just read your post about hallucinations, you seem to have so many symptoms the same as mine - its quite good to know - that sounds awful but you know what I mean - someone to connect to. How long have you been diagnosed, and when were your first symptoms ?
Take care Speedy.

#8
Hi Speedy,

I've had symptoms since my late twenties, i'm 42 now, 43 on the 3rd May. I've been diagnosed just over five years and started medication shortly after diagnosis. It took six years to diagnose me and within the first few years of diagnosis, the neurologist wasn't sure if i had MSA or Parkinson's because i had terrible problems with my eyes along with poor balance and urine retention. He said its very rare for someone of my age to have MSA and it can only truly be diagnosed after death by examining the brain.

One of my first symptoms was dizziness and double vision and i had problems with focusing on people when talking to them. I started to feel extremely tired and kept having to rest. I then noticed a weakness in my left shoulder which passed down to my hand. This lead to me seeing a hand specialist who diagnosed carpel tunnel. I had a carpel tunnel release operation and of course it failed because unknown to them i had Parkinson's. Several diagnosis were made prior to the final diagnosis of Parkinson's. It was the resting tremor that finally pinpointed the diagnoses. If anything it was a great relief, a shock.... Yes, which lead to great anxiety and panic attacks but i got through this with psychiatric help. Last year was a very trying time for me and my family and friends and for some of my friends on this forum too due to suffering from dopamine dysreguation syndrome caused by the dopamine agonists, which in return also caused hallucinations, sleep deprivation and paranoia and nearly cost me my life, sounds like i'm exaggerating but believe me it did. But i believe i've become a much stronger and positive person because of it and am determined not to let this disease dictate my life.

Now it's your turn Speedy to tell us a bit about yourself.

#9
Hi CutiePie
Sorry to read about your difficulty with swallowing.I occasionally have this also and it can of course tend to feelings of panic.I read somewhere on thissite that a doctor recommend that one swallows tablets by putting one's chim down on the chest.I also bite the big tblets in half.And I try to remain calm although it is not easy.Take careand i hope it works.
Michael

#10
Post removed

#11
Hi Michael,

I'm feeling more positive today. I know this is a progressive disease but like you say, sometimes new symptoms are quite alarming and frightening. Just have to watch they don't stress you out too much because we all know what stress and anxiety does to us. Glad i posted about it though, helps to write things down sometimes and it's comforting to know you're not alone. Thanks Michael for replying.



Hi Poker,

Yep it certainly is a bum**r that we've got this progressive illness to live with. How are you? Not only do you have PD to contend with but diabetes too, must make controlling symptoms challenging. Does diabetes run in your family? My grandmother had type two diabetes, she was diagnosed shortly after she fell down the stairs and broke her arm. She fell because she kept going dizzy and had problems with eyes, unknown to her symptoms of diabetes.

Well better log out, Lewis is poorly, been poorly for quite few days now, not even touched his easter eggs so he must feel bad. He's at doctors this afternoon so we'll see what he's got to say. Had a laugh with gp receptionist.....I said 'my little boy needs to he seen asap', she said?' and i said 'he's not been well for few days, off food, temperature....not even eaten his easter eggs.' She said 'well that is serious, but we can soon sort that out, bring him down at 3.40pm today and bring the easter eggs with you, lol.'

Nine easter eggs are sitting staring at me, god its hard work ignoring them, i've even put them in the bottom of Lewis's wardrobe out of sight but they keep shouting eat me, been tempted, picked one up and put it back. I've demolished mine, whoops:fearful:

QT

#12
whoops, done a Weedy, lol. If you're reading Weedy, how are you?

QT:wink:

#13
Hi Cutiepie, sorry that you have been suffering, but glad you are feeling more positive. I too sometimes find it hard swallowing but a worse problem I have is I often swallow too much air which makes me feel really uncomfortable and nothing seems to help clear it instantly, unless I do a big burp which I can't usually do either, and that is embarrasing. Take care. Jem xx

#14
Hi Jem,

Thanks for sharing your thoughts with me. Sorry to hear you're having problems with swallowing too. I guess the trick is not to panic and get overly anxious about it because that alone can cause similar symptoms.

Hope you're having a good day. Did the easter bunny bring you any easter eggs?

QT:wink:

#15
Hi QT, yes I ate far too much choc yesterday. Should not have got on the scales this morning! Hope you have a good day. I am just off to walk the dog, then go for physio. Take care, Jem x