Tired of it all

A funny thing happened to me about 2 weeks ago, I had a symptom free day! Since then I have had about 8 or 9 symptom free days. If I don't eat anything except fruit, I have no symptoms at all. 

Diagnosed by a Neurological examination in 2005 whilst working in Dubai and confirmed by a DAT scan in England in 2006 and then undiagnosed by Prof. Erle Lim in Singapore in 2014. Now I am beginning to think that I am going to come out of this (Parkinson's). Prof. Erle could find no symptoms at all during 3 visits with him, at the time I thought that he was wrong, how could this be? After all, I had been told by a bunch of Neurologists that I had Parkinson's Disease.

About 8 months ago I thought that I was approaching the end, falling asleep in such pain, thinking that I would never wake up again. I accepted my fate as inevitable.

Approx' 2 years ago I suspected that certain foods made my symptoms worse and so I eliminated the offending foods, I began to lose weight. In those 2 years I have lost almost 25 kilos (almost 4 stone). Gradually the list of "safe to eat" food became smaller to the point where fruit was the only thing I could eat without feeling like shite. Then 2 weeks ago I did not eat anything at all, the next day was unbelievably good, no symptoms, I thought this must be a fluke. I have experimented with food a little, having fruit for breakfast, nothing during the day and then having food just before going to sleep at night. This has been a little hit and miss, if the effect of eating arrives before I am asleep then I will suffer for 3-4 hours until the food has done its dirty work by which time I am absolutely knackered and will finally fall asleep. I have to say that the need to eat has overcome the suffering it causes but, I will find a way through this, I will become a food detective.

I remember the Neurologist in Dubai telling me that I would have some difficulties with protein and that eventually I would experience side effect of the medication (on - off) I have been unable to tolerate eggs since the beginning and for the last 18 months the medication did what the Neurologist said it would do. I have had no "on - off" nonsense for about 3 weeks. Get this, I take Madopar Dispersible only, it is all that I can find in the local pharmacies here in Indonesia. 2 years ago I was working in Malaysia and was able to get hold of Sinemet CR. A year ago the Sinemet CR became intolerable so, I stopped taking it and hoped that the Madopar would be enough to to keep the symptoms away.

The Medical profession does know what causes Parkinson's, they are clutching at straws for the answer. They are able to recognise certain symptoms and diagnose the condition. 

I have experienced the following symptoms at one point or another.

Cog-wheeling, Balance difficulties, Gait difficulties, Extreme muscle spasms (jaw & feet), No dreams, Sleep difficulties, Anxiety, Restlessness, Poor coordination, Arms stopped swinging.

In 2004 my Mum came to visit me in Canada for my Birthday (October), I had good health at that time. Six months later I had to tell my Mum that I had Parkinson's. I have read that Parkinson's reveals itself symptom by symptom (one at a time). In a period of 3 months I went from no symptoms to full on Parkinson's. 

Yesterday I cycled 16 kms, the third time in the last fortnight.

It is difficult to gauge my symptoms against others with the condition as I have only met 1 other guy with the condition, they say that everyone's Parkinson's is "unique", mine certainly is. 

Anyway, you're probably getting bored now.

 

 

 

No worries Kev.

 

Kev,

Me and the missus are off to Jakarta tomorrow morning (Friday the 16th of December) and so, I will be out of touch until Saturday. Hope that your visit with your Neurologist is ok, I look forward to hearing from you when you return home and have the time.

Take care.

 

HI sorry I've not replyed sooner . I've had all me scans now and now I'm a waiting a follow up appt for the results but the consaltuant I was under has since left so I'm now waiting to given another one . Like many pepole it's the waiting and not knowing . Although I have been told that if it's not parkinsons then they have said I definitely have a brain fictional disease. I do hope your well and all your test and check ups were ok . Funny you saying about going deaf . I've been wearing hearing aids for nearly 2 years now lost 110% of my hearing in both ears so that don't help when my brains on a bad day . Well I'll keep you posted about my appt and any results take care x
Hi just.popped in to wish you a very merry christmas and everyone on the parkisons fourm hears to 2017 cheers xx

Good god kev and I thought I had it bad!!! If I sit am no bad how are you sitting down ? 

Ian 

9th January 2017

Hi Kev,

Thanks for writing, don't worry about taking so long to get in touch, I did not see your letter until this evening.

Food is a mystery to me, for example, I can eat rice one day and have no problem at all, then eat the same type of rice another day and will be unable to move for 3-4 hours. Taste is fine but, the after effects are unpredictable. I try to avoid rice.

I began having difficulties in late 2004, my symptoms appeared almost overnight. The Doctor that I saw at that time gave me medication to calm me down. The medication was a little helpful but, after a couple of months I was a complete mess, the same Doctor advised me to find an "easier" job. I found a job with a previous employer as a supervisor however, my health did not improve in the new job.

I consulted another Doctor who referred me to a Neurologist, he diagnosed Parkinson's before I had sat down in his office. Since that initial diagnosis I have seen many Neurologists, the longest was for about six years whilst I was living in Dubai.

To answer your question, no I do not have a full time Neurologist. I figured that I was wasting time and money, none of them able to give a clear diagnosis. In 2014 I saw 3 Neurologists in 3 different countries and had 3 different diagnosis, one of them saying definitely not Parkinson's.

I never had tremors at any time, I would shiver as if I was cold, I stopped dreaming for a few months which, apparently is not normal. I still have balance problems but, I just lay down until I feel ok again.

Stairs are ok if I am going up, coming down needs more time. 

I try to avoid stressful situations and stressful people.

Like you, I will become a mess if things become too much to handle.

My handwriting has always been small but, quite neat, it used to take forever to write a sentence so I change to a computer and used a voice recorder to remember stuff.

I am going to have to read up on Graves Disease....

Kev, please ask as many questions as you like, if I can help another guy in any way it would be wonderful. You are certainly an inspiration to me.

Take care,

Paul

 

 

 

 

Thank you, Thank you, Thank you for kind reply.

Best wishes,

Paul