Parkinsons: Hello My name is Lesley and my... - Cure Parkinson's

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9284 profile image
9284
19 Replies

Hello My name is Lesley and my husband has Parkinsons and he is 74

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9284
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19 Replies
9284 profile image
9284

I just wanted to join as i like to get all imfkrmation i can

Bailey_Texas profile image
Bailey_Texas

Hello Lesley

Welcome

Just type some key words in the search box in the top right corner and you can information about just about anything concerning Parkinson's. Or just ask a question here and someone will answer.

9284 profile image
9284 in reply to Bailey_Texas

Thank you for replying

My husband Les was diagnosed problem 15 months ago but some of the symtoms I'm sure have been around a long time

The powerful dreams would have been around 10 years Les has dragged his foot for quite a few years Would this be related

He gets in a muddled with his words but can remember things 40 or so years ago

cabbagecottage profile image
cabbagecottage in reply to 9284

Very similar to my husband , he could go back to a boy he was troubled with acting out dreams . That can happened with children but he continued to do so .

Hello and welcome to the Movement. My name is Roy and I was diagnosed a little over four years ago.

Beckey profile image
Beckey

Leslie, I think most of us would say we had perplexing symptoms before we got the diagnosis we were hoping not to hear!

Here's a question: Does your husband get much exercise?

9284 profile image
9284 in reply to Beckey

Hi Beckey

You know he has good intentions but is worn out very quickly

9284 profile image
9284 in reply to 9284

He seems to have deteriorated so quick maybe in last 6 weeks

moonswife profile image
moonswife in reply to 9284

Hi Beckey, ...my husband has fought the battle for nearly 20 years and he is just a few years younger than your husband. He has had periods over the last decade where he deteriorated, and with resolving a non PD problem (like a UTI) he perks up and goes back out to his shop. He and I laugh that is called a "Disease" as if there is a cure. It's Parkinson's Deathknell" and since there IS NO CURE you just keep your activities of daily life going for as long and as best as you can. Adjust your meds, your exersize, your diet, your rest periods, and make sure there is no low grade fever.

And welcome.....moonswife

windhorsepixy profile image
windhorsepixy

Hi - My husband is 69 & was diagnosed about a year & a half ago & I am also sure he has had it for much longer. He has REM sleep disorder which preceded the diagnosis. Gait, postural issues, minor shake.

9284 profile image
9284 in reply to windhorsepixy

Thank you for replying and for helping me realise it is possible that he has had it for a long time

Not sure what that means though

moonswife profile image
moonswife in reply to windhorsepixy

.windhorsepixy...Just like I said to newbie Beckey..my husband has fought the battle for nearly 20 years and he is just a few years younger than your husband. He has had periods over the last decade where he deteriorated, and with resolving a non PD problem (like a UTI) he perks up and goes back out to his shop. He and I laugh that is called a "Disease" as if there is a cure. It's Parkinson's Deathknell" and since there IS NO CURE you just keep your activities of daily life going for as long and as best as you can. Adjust your meds, your exersize, your diet, your rest periods, and make sure there is no low grade fever. Find a good movement disorder specialist, as your neurologist and you have part of the long battle won.

And welcome.....moonswife

park_bear profile image
park_bear in reply to moonswife

I like to think of it as Parkinson's Adventures in Neurology.

closer43 profile image
closer43 in reply to windhorsepixy

Hi-my husband has had REM Sleep disorder since he was 52. He is now 63. He has been taking medical marijuana, CBD oil and CBN capsules. Most nights he sleeps the entire night without the dreams. He has slept on the floor with a matt surrounded by pillows for the last two years. We both sleep easier. He was on Clonazepam for a bit but it was causing kidney problems. He hasn't been diagnosed with PD, but I wonder? I think I see minor tremors but maybe I imagine it. He is more anxious as he ages, but maybe having such a sleep disorder would make you anxious. Anyways, just thought I would reach out to you. Everything we read and have been told is that REM Sleep disorder is a pre-curser to PD and that you will see symptoms a decade later. Anything you can tell me is appreciated. Thanks

windhorsepixy profile image
windhorsepixy in reply to closer43

My husband nearly died in 2001 of bacterial meningitis (listeria was the bacteria - from an unknown food). He had few long term "souvenirs" - but the almost seizure-like jerking in his sleep never really went away. "Scarring on the brain" they have told us. Your brain & spine just cook with meningitis. It is quite horrible. My feeling is that the PD is the real souvenir. The REM symptoms for him started about 2-3 yrs before his PD was diagnosed. He was presented with a nightly parade of mostly small wild mammals that visited him - either on the bed, or on the floor ("see that fox walking out the door with his tail up ? ") (the room was pitch black) - he would be absolutely terrified - even though most of the animals if real would have been harmless. After a sleep study (a raccoon visited) the neurologist has him taking 9-12 mg. of melatonin. It has really stopped the zoo for the most part. He still gets agitating dreams but at least he's not seeing things. I had already diagnosed the REM sl.dis. (& PD !) by the time he had the sleep study - but it too another 2 yrs for them to diagnose the PD. His symptoms have been mainly with gait & slowness & a little tremor. I would like to look into the cannabis possibilities - at this point he only takes Carbo/Levo. Keep in touch ♥

closer43 profile image
closer43 in reply to windhorsepixy

Cannabis has saved my husband!!!! We tried melatonin, the Clonazepam and on the last visit to the neurologist she said they had a new seizure medicine that didn't effect the kidneys. The side effects were still the same brain fog most of the next morning, loss of balance, and seemingly out of touch.

We went to Colorado to find out more about what alternatives we had with Cannabis. He was already taking Charlotte's Web Everyday Advance 5000, which was the CBD oil a lot of children take for seizures. He has been on this for over a year and this also helped with his anxiety, depression and REM Sleep Disorder. He takes this twice a day.

The real life changer for us was when we learned while out in Colorado about CBN capsules distributed by Mary's Medicinal. {there is a website} We were told take two capsules every night two hours before bedtime and he would sleep all night.

We have tried everything else so we thought why not. Guess what it works. I'm not a doctor just a wife who wants her spouse to sleep. There is something about the Cannabis that soothes the brain.

If anybody is suffering from sleepless nights or suffers from REM Sleep disorder and you live in a state that has medical marijuana or recreational do yourself a favor and try the capsules.

He wakes up in the morning happy. The fear of going to bed is gone. Does he still have bad dreams once in awhile, but nothing that wakes him. If he does go on to be diagnosed with PD, which everything were told because of the REM Sleep Disorder holds true, well I believe that the Cannabis is helping protect the brain and I'm glad we have passed medical marijuana here in Florida.. Thanks, Laura

windhorsepixy profile image
windhorsepixy in reply to closer43

Thanks Laura ! And welcome Leslie ! There are some amazing minds & souls here.

JohnPepper profile image
JohnPepper

Hi Lesley. Join the club! If you would like to know what he can do to positively deal with his Pd then go to my website - reverseparkinsons.net and contact me. I will tell you what I have done to reverse my Pd symptoms, which has allowed me to live the past 14 years, medication free and not needing to visit my neurologist anymore. I do not charge anybody for this information or my help. I am not selling any product because everything I tell you to do costs nothing, only some effort on his part. It is not a religious approach either.

I look forward to hearing from you.

cabbagecottage profile image
cabbagecottage

hello Lesley . My husband was diagnose at 70 , he is now 83 .

In hindsight I know he had suffered many symptons for many many years before but stoically carried on .

first and foremost everyone is different , apart from different ages , different stages .

I belong to another site which is excellent for newly diagnosed ..

very friendly , administration excellent as is this site .

It's called Parkinsons support chat and information community .

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