diagnosing Parkinsons: My husband has... - Parkinson's Movement

Parkinson's Movement

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diagnosing Parkinsons


My husband has REM and signs of Parkinson's. I have PD my self so we know what to look for, he has been to see the specialist who treats me, but the specialist was more interested if taking the meds for REM were working. How do you convince the specialist to do more test,. how can you explain the situation to them that's providing you can get an appointment.

16 Replies

If the specialist refuses to listen to your knowledgeable concerns it's time for a new specialist and filing a complaint on the current one.

What is REM?

Rapid eye movement sleep - Wikipedia.


Yes, I know that much, but as your link says this is a normal part of sleep, whereas the original poster indicates in this case it stands for some sort of disorder.

Thanks for the clarification.

Thanks park bear but seeing as we are the NHS I think we will just keep trying. PS hubby has got an appointment for December. REM rapied eye movment.see other post on web site.

Upon further reflection you might want to work on your communication skills in order to get better attention from your specialist.

May I ask what ur and ur husband's diet has been for most of your lives?

We both way a good diet.Every day we have veg and fruit.

Is he frequently constipated? Have you tried Mannitol?

I am assuming you mean REM Sleep Disorder. My husband was diagnosed with it a couple of years before he was diagnosed with PD. I knew then he actually had PD but it was another couple of years before they would finally admit it. The one good thing about his sleep neurologist - she got him to take higher dose melatonin as opposed to pharmaceuticals for his sleep issues (hallucinations mainly). It has really taken care of the main problem. His ongoing issues with sleep now are just getting to & staying asleep. "...just ..." :-(

People who have read my posts will see that as well as have a close family member with PD I also work with inventors, and am co developer of a sleep device called the Zeez Sleep Pebble. I don't want to use this forum as a platform to push our invention, although it is very good (!) - I just want to be open about it, and of course I have lots of ideas about things we might do for PD, if we had the resources. So, there is a particular link between a REM sleep disorder in which people move a lot during REM sleep (a stage of sleep when most of us are in a motionless sleep with paralysed muscles). People with this disorder often go on to develop PD. We have worked with lots of people whose REM sleep has been disturbed - they may have experienced nightmares, sleep paralysis, and in one case (just one, this is not evidence!) had the kind pif REM sleep disorder to which the questioner seems to be alluding to. What we have found it that if we ensure that the sleeper gets enough deep sleep, problems with REM sleep disappear. Our device is designed to encourage natural deep sleep, and other things help -- removing things which lighten sleep is a good start - unplugging nearby electrical devices, avoiding night time and evening blue light, avoiding sugar and high glycaemic index foods. Increasing and maintaining melatonin levels in the body (I prefer natural methods rather than supplements). Sleeping pills won't help - they may extend sleep but can't deepen sleep quality. I hope that this is useful. If you want to see how our deice can help someone with PD, search "Linda" and our device name - there is a clip on youtube. I hope that is useful. Anna

All REM disorders need to be investigated, of course. There are different causative factors for REM, in addition to PD. I would recommend seeing another specialist for another evaluation, if you are not pleased. As one who has been diagnosed with Ataxia and PD, and seizures, I know it was not easy for my specialist to evaluate everything. It took a lot of testing and time and patience. I wouldn’t want to see anybody diagnosed with PD, unless the specialist was fairly certain of his diagnosis. Any neuro-degenerative disease diagnosis is a difficult ailment to manage, for many. Good luck as you seek an answer in your quest!

My husband has had REM Sleep Behavior Disorder for over 12 years. It started when he was around 52 and he is now 64. At this time he has no concurrent neurological disorder. A couple of years ago when it seemed to progress the doctor prescribed him Clonazepam. This drug seemed to work, but had horrible side effects. It was shutting down his kidneys and he had to stop taking. This left us in bad shape. After getting in a fight with a lamp and dresser and ending up in the ER for stiches in his face and head I started to do research. For anybody that lives with a person who suffers from REM Sleep Behavior Disorder, you as the partner suffer just as much. Going to bed is a scary proposition and causes so much anxiety.

I read that there was a study done I think in Brazil in which patients that suffered from Parkinson's and REM Sleep Behavior Disorder were given CBD Hemp Oil. The patients reacted very well and slept as soon as taking the CBD Hemp Oil. The CBD Hemp Oil calms the brain.

I then remembered a documentary that I saw in which the young girl suffered from seizures. They went to Colorado and worked with a company (Stanley Brothers) and came up with a CBD Hemp Oil with very little THC and high contents of the CBD. This is now known as Charlotte's Web named after the girl.

Since it is sold as a dietary supplement I could order from them and they ship to us in Florida. I ordered the strongest CBD Hemp Oil they make which the girl with seizures was taking called Everyday Advanced. It is expensive $250.00 a bottle that lasts for a month. If you have a medical marijuana card and live in a state that has medical marijuana you can find something comparable.

Albeit not perfect my husband sleeps most nights. He takes his first dose after dinner and another before he goes to bed. He also smokes marijuana before going to bed which seems to also calm the brain. He continues to sleep on the floor surrounded by pillows but has not hurt himself again.

The link for Charlottes Web in case you want to research is cwhemp.com/

You can read about Charlotte and the other children with seizures this has helped. There is also a recording device that you can buy to help as well. This works that when they lift their head and body up to act out their dreams the recorder (which is your voice) comes on and tells them your having a dream go back to sleep. This helps when I'm out of town.

In closing we are aware of the percentage of people that go on to develop neurological disorders once they have been diagnosed with REM Sleep Behavior Disorder. For now we're just happy that his anxiety about going to bed and sleeping is good. Any questions get back to me and please let me know what happens when he visits the doctor in December.

Here is the link for the recorder. posey.com/products/falls-ma...

Here's the thing, when we go to the doctors. As long as we are paying them for their services, they work for us. There's nothing wrong with asking the doctor at the first appointment, what is his plan?? What tests is he/she going to have done, ect....

Doctors do not like patients who arrive with their own diagnosis. Especially senior doctors and especially argumentative patients. REM sleep disorder is often a precursor of MSA (a common source of Parkinson's Plus syndrome). In this case constipation and falling are also common. MSA occurs in the cerebellum and damages the sector responsible for balance - hence the reason for falls.

The acccuracy of Parkinson's Disease diagnosis is no more than 75% and MSA is typically one of the confounding factors. It is very risky and difficult to diagnose PD on the basis of clinical observation, particularly in the early stages. Of course the more PwPD the neurologist has examined, the better and more reliable his diagnosis is likely to be.

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