[Clive Varejes]

Hi John,

I was diagnosed just over a year ago now, and I have not taken C/L at all.

My Neuro suggested that I wait to see the progression before I start taking it.

He suggested I ensure that I exercise at least 4 times a week and see how I go.

I now go to gym 2-3 times a week, doing weights, and cycle( about 16 kms), 9-10 miles, twice or 3 times a week. I have found this helps me tremendously.

It does keep my tremors down to a minimum. The only additional medication I take now is 1000mg of Vitamin E a day, again which he suggested.

I also have seizures, which are under control,and am on medication for that, so I really do not want to take anything else unless and until I really have to.

But of course we are all different and different things work for us.

[Clive Varejes]

Hi,

I was also exposed to Round Up on a regular basis.

I had a small holding, 42 acres, where we used to ride and stable horses, and RoundUp was our go to ‘formula’  to kill off all the weeds and dangerous shrubs.

Strangely enough, after reading your comment, somewhere in the back of my mind I semi recall that there was a class action against RoundUp ( Beyer?) in this regard.

 

 

 

 

[Clive Varejes]

Hi all,

Yes, I do find that after gym & cycling I do feel ‘weak’ as well.

I’ve been told by my neuro that it is actually fatigue, and that is fairly common. It’s not that you want to go and sleep, but you feel  totally ‘nackered’ for lack of a better term, for an hour or so.

[Clive Varejes]

Hi Mary Beth,

 

I believe that magnesium helps, but please let him try taking potasium.

I do a lot of scuba diving  and I am Dive Master. One of the really scary things that happens underwater, at any time but especially when you are fairly far down, 15, 20 metres and below, is the problem of cramping.

What we have found is that Potasium helps enormously with aleviating/stopping cramps. There was the old wives tale that you lacked salt, that really is not true.

 

 

[Clive Varejes]

Sorry, contributing factor…

[Clive Varejes]

I have complex partial seizures of the left temporal lobe, however they started about 15 years ago now, and my Parkinsons was only diagnosed about 12 months ago, so whether that was a contributing factot, I really don’t know.

[Clive Varejes]

I had my booster about 3 weeks ago, and had no adverse effects at all.

Although I must admit, a few of the “Novac’s”, informed me that if I waited a few days, I would without a doubt experience side effects.

I waited 2 days them phoned them and told them they were totally correct, waited until they had said their  “told you so etc” then informed them I was growing wings.           Most of then did not think that was funny.                                                                         Go figure.

 

 

 

 

 

[Clive Varejes]

I participated in a PPMI study in New Haven in early December, however apparenty my symptoms were not pronounced enough for their purposes for me to continue with the study.

[Clive Varejes]

Hi Mary,

I go to gym and cycle 4-5 times a week.

Not only does it give me more energy, but it seems to somehow negate a lot of the symptoms of PD.

Perhaps that is just the endomorphin, however whatever it is, it does make me feel better.

[Clive Varejes]

Absolutely.

Every year I vow not to have any resolutions whatsoever, and so far I haven’t broken one of them.

But seriously, no I never make New Year resolutions, they are too easy to make and break.        The fact that you want to spend more time with people you love is really amazing, and I think we all should take that as gospel.

If we are to get through this, we need all the friends we can have. Not just acquaitances, everyone has very many of them, but real friends who care for you as you care for them. They are not easy to find, and if you do hold onto them.

I heard a great saying the other day: “A real friend is someone who will hide you when you need it.”

B-)

 

[Clive Varejes]

Hi guys,
Wow, thanks so much for the contributions, it makes me feel better that I’m not the only one experiencing these aspects.

Alan, so far I haven’t experienced the burning sensation in my eyes, although “dry eye” does appear to be happening more often, but maybe it’s simply a sign of ageing and getting p…ed off with myself when I drop things, and knowing it is a result of PD doesn’t really help.

Robert, the fact that you can’t find your phone etc is not unusual.

I  have had that hassle for years now, but it probably has nothing to do with PD.In fact the one time I was searching high and low for my glasses when I found them on top of my head.

Ok, oK, laugh, it may happen to you one day.

My wife who does not have PD, has her phone/eyeglasses/bag being ” stolen” at least twice a day, that is until she finds where she put them. What can I say.

Karla, these people you “grab onto to steady yourself”, can you choose who you “stumble upon? Asking for a friend.

I suppose if we don’t laugh about it, it would drive us totally nuts.

[Clive Varejes]

Hi Robert,

Thank you so much for your novella, it certainly brought a smile and occassional laughter, well perhaps more than occassional.

” In fact, my hallucinations are downright cheap–no sound, no color, no plot, and very brief. So wimpy are they that I don’t even find them a nuisance.”

I’m so sorry to hear about this, if you are going to have hallucinations, they should at leasts have the decency to be interesting. Have you tried contacting them to state your displeasure?

Thus far, I have not experienced the thrashing about in bed, and kicking various objects, however I shall keep this aspect of PD to myself as it may just give my wife an ephinany of why she needs the bed totally to herself.

I also have no problems driving, however I have experienced double vision on the occassions when I find that a good single malt, an armagnac, or great wines tends to cause this particular afflicition.I would like to assure members of the forum that this is not my choice, however I find and that these various liquors tend to gang up on me and, despite my vigirous protestations, force me to imbibe.    I shall continue the good fight.

I do have the ‘visual field’ problems, however I have had those before the onset of PD, and have been informed by my neurologist that it is one of the symptoms of my seizures.

I was diagnosed with ” complex partial seizures of the left temporal lobe” about 14 years ago now.

Touching on that subject, my wife who does not have PD, is convinced that her mobile, sunglasses etc are stolen at least 3 times a day well until she finds where she has left them.

And yes, I do experience the emotional side of PD, however again my Neurologist explained to me some time ago that I would experience this, again as a result of my seizures, so I have a double whammy.

Clive

[Clive Varejes]

Yea, absolutely, I do.

Although of course it could never be that my brain and muscles have lost their coordination,  the only logical reason is that an alien spaceship flew out of the ether and the people/animals/things thereon knocked the objects out of my hand just to drive me nuts.

Well that’s my story and I’m sticking to it……

[Clive Varejes]

I took the booster jab a week ago now, and had no adverse reaction whatsoever.

[Clive Varejes]

Thanks Toni,

Thanks for the reply.

My problem seems to be more a spacial hassle. I used to be able to park my car straight away with, I not sure where you are from so, 2cm/1 inch, to spare on either side, however I now find occassionally, I have to go back and forth a few times before I get it right.

I do have seizures, although totally under control, so it may be a combination of the 2.

So far, although now and again my dreams are more vivid, I haven’t started acting them out.

 

[Clive Varejes]

Hi all,

I live in Cape Town, South Africa

[Clive Varejes]

I know the feeling.

I actually force myself to go to gym or cycle, and that actually makes me feel more energetic.

[Clive Varejes]

I do weight training at gym 2-3 times a week, specifically depending on how lazy I am.

Cycle twice a week, as I live in Cape Town across the road from the beach and promenade, it makes it a pleasant and easy going ride. No competitions or anything like that.

I have also taken up golf, and am really too bad at it to curse when I play a bad shot, which happens fairly often.

B-)

 

[Clive Varejes]

Cape Town

South Africa

[Clive Varejes]

Yes, I accepted the diagnosis after a bit of shouting, screaming, laughing, running,.kicking………………

I did realize, that no matter how much I railed against the situation, it was not going to change, so acceptance seemed/was the only option.

As Michael Fox stated:   “Acceptance does not mean resignation. It means understanding that something is what it is and there’s got to be a way through it.”

Of course I did, as do almost all, shout ‘But Why Me??????’    Then I realized, ‘but why not me?

So yea, I have accepted the situation.

 

Clive

[Clive Varejes]

Hi guys,

I have not experienced cramping as yet, but what I do know is that a lack of potassium is a primary cause of muscles cramping up.

I am a Scuba Dive Master and when I first started diving I was under the impression that it was a lack of salt, however I learned that is totally incorrect. As you can imaging when you are diving, the last thing you need is for your muscles to cramp.

I always advise my students to eat a banana or 2 every day to avoid the cramping. Bananas have about 500mg of potassium. As long as you are eating properly and having foods that are high in potassium like fish, red meat chicken etc. you should have no problem.

I know they recommended about 3500mg of potassium a day, however I have never had that amount and I very seldom have cramps.

I just hate taking additional vitamin pills unless totally necessary. As any good doctor/nutritionist  will tell you, all that does is make the manufactutrers really rich and cause you to have very expensive urine, as your body expells the additional vitamins as urine.

That being said I realize that PD is a totally different situation and we do need additional potassium, manganise and others but please remember not to waste your money by taking needless amounts.

[Clive Varejes]

Sorry different coping , not comping….

[Clive Varejes]

Strange, I’ve never heard of that before, but as we have slightly differing symptoms different things work for us.

[Clive Varejes]

The is a PPMI study in Lagos.