[clive-varejes]

Yea, I find that occasionally I do have the same problem, however I’m not sure it is related to PD.

[clive-varejes]

Hi Ally,

I really do find the forum interesting and the feedback from people in various stages of PD, be they PD sufferers themselves, or care givers is really amazing. The way people open up stating their fears, problems, difficulties, & highlights  as well as suggestions for others to follow is wonderful.

My problem is that I have had a few of my comments deleted as well as some edited by, I can only presume one of the moderators for some obscure reason. I have asked why, as I obviously would not do anything that may cause distress however was met with a deafening silence. If I said something wrong I would like to have known what and why.

I just find it incomprehensible that someone would delete/edit my comments without having the common courtesy or gumption of saying why however, I have no doubt I am not the only one this has happened to.

I am on a number of differing forums as well as consulting for Suicides Anonymous and Depression and Anxiety groups and have never had this type of asinine situation before.

Thank you for the forum, it is really interesting and informative.                                  However Que sera sera

As I feel there is a more than fair chance that this will be deleted/edited as well,  I will say my goodbyes and remove myself from this forum.

[clive-varejes]

Hi Patricia,

I have no doubt that your gastro has recommended the life style changes necessary as well as H2 blockers and Proton pump inhibitors, but a new study that has come out is Acupuncture.

“In one study, treatment with acupuncture stopped reflux in the test group better than PPIs, with results that lasted longer. We need more large studies to confirm this, but early results are promising.”

I must admit I am skeptical however they say it does work. I suppose there is no harm in trying.

Good luck.

 

[clive-varejes]

Hi Patricia,

Botox into the forehead would be totally useless for Migraines, although it will help with wrinkles.               🙂

One of the primary causations of migraines is muscle tension in the jaw, when you clench your teeth, perhaps while you are sleeping, I normally get hammered at about 03:00, and the muscle tension into the muscles of the back of neck and shoulders and surrounding area.

Of course I am not talking about chocolate/coffee/etc, although none of those affect me at all, different things affect different people.

Tell your neuro to inject the botox into your jaw lines and shoulder muscles.

I promise you it will make an enormous difference. Just remember it takes 2-3 days for the botox to work.

[clive-varejes]

Hi Cynthia,

I have a similar situation, however I do know it is related to my migraines.

What I suggest, and it has worked for me, is to have your doctor/neuro give you botox into your jaw muscles.

 

[clive-varejes]

Hi Patricia,

I’m so sorry that is horrible, and usually chronic.   Is there no medicatioon that your gastro can prescribe?

As far as I know it has nothing to do with PD, however as we know it affects different people in differing ways.

[clive-varejes]

Sorry Troy, how I typed ‘today’ instead of ‘the’, is a mystery.

I can only put it down to old age. That’s my story and I’m sticking to it.

[clive-varejes]

Hi Bob,

Yes, the keystroke situation I can identify with.

I feel it is simply as a result of my slight tremors and either hit the wrong key, hit the same key twice, or simply miss one letter totally which I thought I had touched.

 

[clive-varejes]

Hi Gauri,

Yea, that is very weird, are you sure this is a symptom of PD?

I’ve never heard of it before, but perhaps someone on the group who has experienced something similar can help.

[clive-varejes]

Hi Troy,

 

Please don’t keep today ballet to yourself.

Love to hear the wailing and gnashing of teeth.

[clive-varejes]

Hi Troy,

That heightened creativity really is a plus.

Being able to sketch, or paint or create someting must give you an enormous sense of pleasure and achievement.

Unfortunately I have always had a problem even drawing a straight line with a ruler so that is a no go for me, but it does cause an inordinate sense of amusement to my so called nearest and dearest. Unfortunately there are no laughing icons on the site so you’ll just have to imagine me laughing.

As regards the crying myself to sleep, it is only because of the lack of chocolate, although I must admit I do occassionally grab a bite of one or two, just to find out if my taste buds have regained their sense of logic. Thus far no, but I shall not give up…………….

B-)

B-)

🙂

[clive-varejes]

Hi Troy,

Sorry I missed your loss of weight syndrome.

No I haven’t had that problem at all.

[clive-varejes]

Hi Troy,

Thank you for your reply, it fits with my coffee dislike perfectly.

However what annoys me even more is the fact that I have started disliking the taste of chocolate like Lindt, Toblerone, Ferrero Rocher, Lindt & Sprüngli, Toblerone, Cadbury .

At times I cry myself to sleep…………..

 

[clive-varejes]

Hi Ally,

Thanks for the info, the article was interesting. The loss of taste, smell etc symptoms seems very like the symptoms experienced by those who contracted covid badly. I wonder if one or two of the receptors are affected the same way.

However my senses of taste and smell are still good, it’s simply that I just do not enjoy the taste of coffee at all any longer.

[clive-varejes]

Mary Beth, I have a very weird symptom, which is in all probability not related to PD, and everyone is going to think I’m nuts however as you will not be the first ones to totally believe so, I’m going to mention it anyway.

Ever since I was in my late teens, I used to enjoy coffee, which I drink black and with no sugar, usually espresso. I always had one first thing in the morning and another 2 or 3 during the day.

I have a Swiss Nivona, bean based coffee machine, which allows you to make espresso, latte, cappuccino, etc. The reason I mention the machine is because about 2 years ago, now that I think about it, just before I was diagnosed, I started disliking the taste of coffee. I tried all the varients to no avail.

After that lengthy and totally unnessary description , could this be a symptom of the PD?

[clive-varejes]

Hi Kim,

I’m not sure if ours is the same, but I get that sort of feeling as well, but mine is almost as if a hot “wind” was blowing through my head, and sounds became muffled and everything became blurred. I initially thought it was a symptom of migraines.

It was finally found to be a symptom of seizures. I have “complex partial seizures of the left temporal lobe”, yea, I know it’s a mouthful, but that’s the technical term.

It is not as bad as epilipsy but a sort of first cousin. B-)   …    Luckily it is and has been under control for some time now.

Of course, as soon as that gets under control, PD happens.  Someone is out there to get me. I must start looking around for Voodoo dolls that look like me and have pins sticking in them.   At least I can laugh about it.

Kim, perhaps let them look for that.

 

[clive-varejes]

Thank you Richard, it certainly seems as if she is really one of the unfortunately too few genuine doctors who actually do their research and act in the best interests of the patients.

[clive-varejes]

Hi guys,

Yea, I also find music relaxes me, and when I’m relaxed I find my tremors ease a lot as well.

I enjoy a myriad music from Classical to Jazz, Rock, the Rat Pack, the music of the mainly 60’s, 70’s  and bands, diva’s and individuals to many to mention.

I used to play the guitar and saxophone, however unfortunately my voice leaves a lot to be desired, other than if you enjoy the sound of a vehicle gear box about to give up the ghost.

And I must state with Jazz I love specifically New York from Soho, Greenwich Village, Upper West Side, and of course the Lincoln Centre. However as I live in South Africa it is a long trip.

Sorry just reliving.

 

[clive-varejes]

Wow, the responses have been amazing and incredibly informative, thanks to all.

Charles, there are actually no words, however it is amazing to see how well you are coping, that takes an extremely strong mind and will. I’m not sure how many people would have coped as well as you have.

Please remember that anxiety and depression are basically first cousins and if you suffer from one, the likelyhood that you will suffer from the other is virtually 100%, as they feed off each other.

As regards the anti depression medication. obviously it affects each of us in different ways as does PD. The “basis” is the same but there are always differences, in the medications themselves as well as how different people react to the effects.

As I suffer from seizures, not as bad as epilepsy, but again first cousins, I do know that the body builds a tolerance to any drug and in time you have to increase the dose, and eventually, once you have reached the limit for that one, go onto another, where you need to decide which ‘side’ symptoms are the easiest to handle. I have had to do that a few times already, I have had seizures for about 20 years now. So I go onto another for about 9-12 months, then can go back onto my prefered one.

So as I said, I will keep away from any anti depressants as long as I am able.

As I stated before, I am excercising, gym 2-3 times a week and cycling around the beachfront 2-3 times a week.( I alternate, depending on how lazy I am.) I do not cycle far maybe about 15kms /9.5miles at time, but it does allow me to watch the waves in the sea, swelling and abating and crashing against the rocks and it does calm me down.

I used to scuba a lot around the world, and being under the sea, usually at about 15-20 metres/ 65 ft down, (and about 30m-35m/100-115ft for wrecks), watching the myriad vibrant colours of the fish and corrals, and occassional crabs, lobsters etc and at times, if I am lucky dolphins & manta rays & sharks &………………. Forgive me, I am trying to relieve something I obviously cannot do any longer…………………..oh well.

I do find that the exercise definitely helps in mitigating the symptoms, in that the tremors honestly do abate a lot. I find the tremors increase when I am hassled.

I also counseled for Suicides Anonymous and Life Line, and so realize that perhaps I am not as “badly off” as I may think at times.   B-)

I do take 1000mg of Vit C and 1000 mg of Vit E a day, which I think help.

[clive-varejes]

Thanks Toni and William, appreciate the feedback.

As I said I was not aware of the slurring, but I have asked that when I do they tell me about it so I can understand what I am doing and when.

I haven’t noticed any ‘softening’ and my wife continually tells me to stop shouting at her, and I apologize profusely but explain thats part of the DP progress…., but maybe it is intentional ……… ok, ok just joking…………..

 

 

 

[clive-varejes]

Hi Glenn,

I agree with you 100%,

I will only start taking medication when I basically have no choice.

I also much prefer excercise while I am still able to and it certainly does reduce my symptoms.

The one other problem of course, as I know from my experience with my Seizure medication, is that the body builds a tolerence for any medication, and over the years you have to increase the dose.

Thus I will wait as long as possible.

Luckily my Neuro, actually both my Neuro’s, I used to live in Johannesburg and moved to Cape Town, ( both cities in South Africa) agree that it is preferable, if you can to delay.

[clive-varejes]

Sorry my spelling is disgusting:

Suicides Anonymous………

[clive-varejes]

Hi Ron,

Right up front I am not a doctor, or a health care professional in any way.

I have counseled for suicides anonimous and life line, and I do understand the enormous placebo effects that suppliments or other agents, if trusted, can and do have on one.

Naturopathic suppliments comprise of a myriad different ‘natural remedies’.  I would suppose solutions that contain the normal vitamins etc cannot do any harm, and of course may, in instances help.

The one thing I am totally against, and I can already hear the roar of disapproval from others, is homeopathy. I honestly and truly believe it is simply “snake oil”, that claims to cure anything that you can think of.

Homeopaths believe that the lower the dose, the more powerful the medicine. In fact, many of these remedies no longer contain any molecules of the original substance. They claim that water has a memory and that is why total dilution is acceptable.

 

 

 

[clive-varejes]

Hi Mary Beth,

Although,  as I stated, my musical ability was severely limited, I did enjoy the sax, however bowing to pressure from my neighbours who started a crowd sourcing division to raise enough money to buy the sax from me, and facing life ending threats I decided to sell.        Ok, perhaps that’s not exactly how it happened.

It was simply that I found that the tremors were hindering my limited playing ability.

I still, very occasionally like to play around with a guitar.