Survey


#1

I have just completed the Parkinsons on line survey.

It asks some fairly basic questions, and to give anyone an insight what parkinsons can cause, could go much further.

My Parkinsons is not causing me too many major problems. But it has caused many irritating side effects.

I take four sinemet Plus a day.

I never had high blood pressure, or high cholesterol before Parkinsons. I also have numb feet, and take great care moving around. I have also had two minor strokes, one before I was diagnosed, and one a year ago.

The worst effect is at mealtimes. I can easily choke, so eating slowly and small mouthfuls is the order of the day.

Of all, the most annoying is a continuous nose running throughout the meal. It sometimes takes a slight cough to start it off, so eating with a box of tissues one side, and a bin the other, is normal. Not so good if you go out for a meal though.

But my Parkinsons has not caused me as much trouble, as my deafness. I have a profound loss, after losing my hearing thirteen years ago. I can`t blame that on Parkinsons, but it has had a more serious affect on my life, than anything Parkinsons can throw at me.

Mentioning these symptoms to the Parkinsons nurse does not get much of a response. So I assume not many people suffer in this way…


#2

Hi johnnyD
I think many of us have more than one problem, and it is always difficult to decide which comes from Parkinsons, and which is just another thing we have. we just have to cope with whatever life has thrown at us, and keep soldiering on - there isn’t much choice!
Audrey


#3

Hi JohnnyD,

I was diagnosed in March 2018, I have had a runny nose when I eat for a long time. I have never read that it is a symptom of PD, in fact I am now going to Google it. I take Sinemet 4 times a day.


#4

Hello Johnny tom from USA. Parkinson’s is a learning experience for all of us that have the disease.
I noticed you said you had a stroke before diagnosis. Did you have PD symptoms before the stroke.
I was told I showed signs of mini stroke upon examination of my eyes. Also before my PD diagnosis my blood pressure had the doc’s stumped. My blood pressure was all over the place. No medicine got it under control. My symptoms at that time were( Constipation, some lose of smell,muscle cramps,right side slight foot drag that was intermitent, stiff neck and right shoulder, change in handwriting and also a heart rate that was slow to increase speed with exercise, rem sleep disorder) No wonder my doctors were confused.

On the USA forum one person talked about parkinson’s caused by stroke. From what was said some how the stroke hit the area of the brain respouncible for dopamine production. A dam stroke alone can cause many physical and cognitive problems.

That same person that had the stroke the doctors said caused his PD. Sinemet dose did not work well on his symptoms. I am no doctor but I think sinemet works by letting l-dopa cross the the blood brain barrier. Once it crosses, there are cells in the brain that change l-dopa to dopamine. In his case he indicated that the stroke targeted the cells that change l-dopa to dopamine as well. IT is rare in occurance.

I am different as well. In that once I got to a Movement specialist.She prescribed Sinemet. My blood pressure became STABLE. My symptoms improved. I asked her about the blood pressure and she said PD is weird on how it effects the autonomic system. The vagus nerve. Fight or flight. She kinda said a cloudy area PD the automatic system.

I think you should see your consultant to get their advice they are best trained.

Also my older brother has had three strokes and I can tell you from observing my brother. Allot of brain cells must be kinda stunned for awhile for my brother gets along better than I do. Because his Physical Problems got better as time went on. To add my brother IMO would of most likely only had one stroke if he would have followed his doctors orders. (did not take meds all the time, ate too much, stubborn as a drunk in a pub).

It all works out. Listen to your doctor,exercise,and install in your heart that PD will not defeat you. Good day


#5

Hi Margs.

I think this answers your question.

when they cure Parkinsons, it will cure most of the other things we suffer with.


#6

Hi Omahatom.

I was diagnosed the end of 2016 I think. I had numb feet at least three years before that. After diagnoses, I was told I had had two strokes. One I remember as it has affected my right hand. I don`t remember the first, but I lost my hearing in 2005. The ENT specialist said it was a heart attack of the ear. I am beginning to wonder if that was the first, but may never know.

My blood pressure is very stable now, but my blood sugar level has been all over the place, especially when I was in hospital with a chest infection. I was classed as diabetic, but not now, as I managed to reduce my sugar intake.

I cant say if Sinemet is actually doing anything for me. I only hope its helping the brain somehow. My doctor thinks it helps my walking, as my left foot sometimes has a mind of it`s own.

I have a physiotherapy appointment next month. Not sure what that will tell them, as I can still walk reasonably well, and don`t need anything to prop me up as yet.
So in spite of PD we still struggle on regardless….


#7

Hi Audrey.

I know PD didnt cause my deafness. But its had a go at most other parts. But I am thankful I can still move about, and am not in any pain.
I don`t have time to worry, I just keep going. That is the only choice, as you say.


#8

JohnnyD Hello again I looked into the archives of Dr. Okun USA.(one of the top USA parkies doc’s) What I found on nasal drip. Studies show that people with PD have a higher % of the problem than the population as a whole. Sorry I didn’t mention that I have seasonal nasal drip my doctors all get together when it comes to meds. My EARS Nose and Throat Specialist prescribed Triamcinolone Acetonide nasal spray. It works well.

Sorry to hear that the sinemet does not seem to do much for you symptoms. So Hang in there. I would look into Rock Steady Boxing Classes. It has shown to slow down PD. I believe I read that the frontal lobe of our brains tries to compensate for our loses. PD or STROKE the brain must adapt. RSB classes put all our senses and balance to test and raises our heart rate to boot. More blood flow to the brain. Give it a go can’t hurt.


#9

Hi Omahatom.

I tried a search for Triamcinolone Acetonide nasal spray. It`s called Nasacort Allergy Nasal Spray in the UK. It contains Triamcinolone Acetonide, and I will ask my doctor at the next appointment.
Thank you very much for the information. Not too sure about boxing classes though, I thought hitting the head did more damage than good…


#10

It is non-contact. It is world wide. I know UK has it as well. The Parkinson’s Association Accredits Trainers. The program is also recommended by the Micheal J. Fox Foundation. I think if you mention it on this forum you can find out about the UK’s program and locations.


#11

Thanks Omahatom.

I will see what I can find out. I just didn`t want to sget my head knocked off!!


#12

JohnnyD I Boxed in my teens and early 20’s. Had 26 bouts. The doctor and I talked about chemical exposure,genetics,and things that might have cause my PD.
One I added was That sometimes when I throw my left, that I dropped my right. LOL When you do that there is a good chance of getting you head knocked off! And I did. LOL


#13

Hi Omahatom.

Unfortunately, there are no RockSteady classes anywhere near me. So I will have to do some gardening and a bit of walking instead.

I expect you soon learned not to drop your right, to save your head.