Managing hidden Parkinson's symptoms
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- Опубликовано: 13 сен 2017
- There is very little existing data about non-motor symptoms for Parkinson's. Yet things like depression, anxiety and constipation can cause more distress to people with Parkinson's than more visible symptoms. Parkinson's specialist Dr Robin Fackrell explains how we can manage these symptoms better.
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His comments at the end are really good to hear. The non-motor symptoms wearing off is something I’ve never get validated
This information tells me my sister had Parkinson's years before her diagnosis and then sh died 7 years later.
Really informative and helpful. It's so important for us to mention these hidden non-motor symptoms when we're seeing a consultant. I will keep a note of them and take that note to each appointment so that I don't forget to share them with the neurologist or PD nurse.
The best explanation ! After many this is the one what we need to ear , great doctor,thank you!
I was diagnosed withf Parkinsonshis 12 yead ago and this lis one of the best presentations I have ever heard.
Lack of emotion for example is never spoken about. by doctors or
Consultans 0iI diiid not bring it up because in reiation to balance and mobility problems it seemed trivial
What a helpful presentation. I wish my brother had a caring doctor like you.
My neurologist for 7 years fought the diagnosis even though just about every symptom box was checked and I was deteriorating every quarter. I had to go outside the system I was in, to an independent neurologist who specializes in movement disorders to get a signed diagnosis.
The in system doctor tried 12 different medications to fight the symptoms but would not try Parkinson medication. It was a frustrating, depressing and scary time. If it wasn’t for my family I would have given up years ago.
Way to hang in there! Good job.
Hi, we're so sorry to hear that you went through so much with your diagnosis and you are so lucky to have such a great family. Unfortunately we've heard from others with similar stories of diagnosis, which can take far too long. Remember that our website has help and advice for anyone affected by Parkinson's www.parkinsons.org.uk
Your presentation is excellent. You covered everything that affects me and not recognized by any of the medical people I’ve seen over the past year. I’ve had a year of physical and mental hell. I can only pray the new year will be better.
Brilliant presentation
Very well organized speech. One of best on Parkison's. Thank you.
Thank you for explaining it so well..
When you go to see a doctor you get a 15 minute slot and they only want to discuss one problem and so you never get to discuss all your issues and this is why you never receive a proper diagnosis. The symptoms are never linked to each other and when you keep visiting a doctor you feel like some sort of hypochondriac turning up with individual complaints
Job well done.
Thank you very much for this educational video.
Great information.. It has been so helpful..I have warched many videos but this one is best I’ve seen My husband has Parkinsons
Helped me understand what I'm going through.
Excellent presentation explains many of the questions that crop up with Parkinson's.
Excellent information and a great presentation👍
Very useful. Thanks for your clearcut information 🙏🙏
This presentation has answered many of my questions.. Thank you for this
I’ve been suffering for a year with many symptoms associated with Parkinson’s. I’m passed back and forth between doctors and I feel like I’m being used as a fee tool. Dr Fackrell,s video was the closest source that hit upon many of my symptoms. I don’t know what to do next. I have major falling episodes, Hugh pain in my head, neck and shoulders. I can’t stand still without dizziness. I’m constipated and have a low energy level . On occasion my arms shake.
When I tell all these things to my doctors I’m told to drink water and see them in three months.
Hi, so sorry to hear that you've been suffering so much. The best thing we can suggest is to call our helpline on 0808 800 0303 - they should be able to give you some advice. Wishing you all the best and hope your situation improves as soon as possible
😊ô
I'm having the same problems as you, except no falling yet
Do a Castor Oil pack for constipation. My mom hasn't had any issues since applying castor oil on her stomach.
Great info..i live well with some slight symptoms n don need any further medication. Tq.
Will pass your info to parkinson,penang,malaysia.ok
This was great it just told me of what i have and what i need to do
THANK YOU
Thank you so much.
Muito obrigado.
Excellent recapitulation of Parkinson’s symptoms that
pathetically seem to elude most neurologists.
This is very interesting I have dealt with all these symptoms for years and i drink huge amounts of coffee, four liters of carbonated water a day and also crave salt and so use a load of high quality sea salt. I eat as little sugar as i can and walk at speed for about an hour at least per day. this keeps me going. Recently the shaking has got worse though, its really helped with my vibrato in my guitar playing. Seriously though I think the thing you have to do is keep going, fight harder and never say die. well, till you die.
Great speaker
This is the best presentation for patients and caregivers that I have ever heard. I well bookmark it!
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Thank you so much for this video which I thought was excellent. Very clear, very informative, very well presented. I am currently involved with research projects to do with identifying bio-markers and in a long study of NMS. Thanks to you all for the work that you are undertaking.
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Tremor In Parkinson’s
“It also appears to be the case that tremor is the only symptom of Parkinson’s disease that may improve on its own - some who had severe tremors have seen them virtually disappear over the period of a decade. Tremors also rarely continue to worsen beyond a certain point - at some point the tremor will plateau.”
It’s 2021 and I believe I might have parking and so does my doctor. Initially I was diagnosed with fibromyalgia after so many years of them not finding anything. And my doctor recently looked at me and said you can’t see fibromyalgia but I can see this, you can see this. I shuffle walk and it looks like I have Cervical distonia in my neck and i look crippled 😔 my right leg is almost useless. It started there first. Foot drop and then it progressed really slowly through the years and now here I am a complete wreck and no diagnosis and before doctors were brushing things off. But now that you can clearly see a severe problem they are taking me more seriously. Everything being discussed in this is me to a T
Hi, thanks for your comment and I'm sorry to hear this. You may find the information non our website useful www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons Best wishes
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Great video!
Thanks - we're glad you found it useful :)
GREAT INFORMATION AND VIDEO THANKS this has HELPED a lot. ENJOYED THIS INFORMATION.
Motivation Generation Boom
I have Parkinson's and coping with this. Thank You, thank you.
Hi Troy, so happy that this helped. There is also information on our website if you're interested www.parkinsons.org.uk/information-and-support
any chance of getting a copy of the presentation? Couldn't see the penultimate slide.
Nice.
What about physical exercise? Is it a positive, and which are the most positive?
Very well said
Great
Also I do isometric body and facial exercises. which help keep things going.
Very good presentation - Thank you. BK
I have it and I knew something was wrong with my health when I was 12. I was slow in movement and couldn't learn at school. I live in the Netherlands but my brother and sister in Afghanistan has it too now. I am now 38 and they are younger then me . They couldn't be helped diagnosed and medication in Afghanistan. It is in our family. I would like to know if there is any idea of how to help my family in Afghanistan.
Unfortunately my mother was told she didn't have Parkinson by the specialist. Has all the issues listed. After seeing this video I will definitely look at getting a second opinion armed with this information
Hi David, we're glad you found this video useful and informative. If you need any more assistance please give our helpline a call on 0808 800 0303
Re: apathy and fatigue. I think apathy could be mostly related to having extreme fatigue. I play 2 instruments and I can practice when tired but I have to fight fatigue to get through it.
Re: meds. Sometimes I adjust my meds, due to feeling the levels are high. So, for me, taking meds at exactly the same time can make me very uncomfortable.
Treatments: this is where focus should be made. What is happening at the cellular level? What can be done to eradicate free radicals? Exercise has been well researched and proven to delay the progression of PD. Alternative treatments have a place and should definitely be researched to see how these may fit. It is NOT just med management that helps improve quality of life for people with this disease. I have heard that most neurologists, even those with movement disorder training, do not recommend or know much about alternative therapies that can improve quality of life. The patient with PD needs holistic treatment. To tell a patient there is nothing else that can be done except adjusting meds is not well managed. At the very least, intense exercising regularly can greatly improve symptoms of PD. I find that I have been finding out about treatments on my own, and when I ask my neurologist, she reports she doesn’t know anything about any alternative therapies. I wish I could bill for my own research! I am a health care professional who retired early due to extreme fatigue related to PD.
My mo
ther is parkisons and she live further area in africa and she can not have proper treatment so how can help
i have PD(at least thats what ive been told by my neuroligist....)
i wonder tho i had NONE of this symptoms..absolutly none of them...my smell was great(i always was the one that noticed there was a gas leak of someone left the gas on) no constipation..no sleep disorder... no sexual problems(well i had but that was the wifes fault :P) always had a low blood pressure(close to perfect)
the only things what happened to me that i can tell looking back...about 3 years before i had more problems taking risk(playing EVE online where risk if a real problem and i noticed i took a lot less risk as i used to) a year before diagnose, there where struggles in my relationship and i started noticing i had problems getting arraused..and i noticed that during social interaction like talking to one of my kids teacher i started shacking in my arms nad like a half year before diagnose of PD i split up with my girlfriend(17 year relationship) i started noticing while walking i had feeling of my knee of one leg felt if it wouldnt stretch all the way strait..wich i found wierd and i even told my daughter that it felt wierd walking..
now it was a bad split up so all the sudden i started shaking more and more and by then my sleeping problems began while i used to just sleep well i couldnt get into sleep due to the shaking, i was send to a psychiarist(becuase they tought all the skaking and bad sleep was becuase of stress due to a broken relationship of 17 years.) but the meds he gave made it only worse(i got mirtzazipine and that gave my livid dreams i still suffer from even tho ive only taken it a week then stopped)
by then i was feeling i was going to die i had not had any sleep for a few weeks by now and shaking very badly i had a appointment with another docter i normaly have(older man ill guess he seens to be more experianced and he said...it looks like you have parkingson...i was rushed to a neurologist got a nuclear scan of the brain and was told i had most likely parkinson and was given medicine(sinemet/levadopa/entacapone)
as you can see and so far i can see i had NO indication at all that there where problems...also since ive been diagnoced i have given dna samples and i just got a the result back that i dont have any gene mutation in GBA1 or LRRK2 genes.
so im just about clueless atm whats going on....
i hope for a cure fast(dont we all) becuase it such a horrible desease :(
So am I man my grandmother have this disease how old are you? and what these genes that increase PD
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Agreed with many comments below. A superb presentation. Love to hear more videos from this man. NMS are so varied and more often than not they are misunderstood or simply not recognised. The general public has no idea about Facial mask, bad speech, terrible handwriting, drooling, posture and many other symptoms
Testimonial:
By the time I discovered Philip at the MBS festival in Sydney 2013 I had given up the idea of walking comfortably or for any substantial distance.
I had been diagnosed with Parkinson's Disease in Jan 2011. I was on regular medication but the effects were often unpredictable - making me dependent at times. I was determined not to take a stronger drug unless it was absolutely necessary.
I was drawn to Philip's stand at the MBS despite the fact that I had decided not to have any more healings because of disappointment. After a kinesiology/Kinergetics treatment I was able to walk more comfortably and without my cane.
After months of being a hermit with no social life, I had regular treatments and as a result was able to:
• travel alone
• go camping
• travel on buses, trains, planes, and overnight coaches
• go to the theatre
• walk 6km
• deal with past trauma
• feel more independent at home.
Main corrections: BNT, TMJ and Kinergetics Trauma.
Initial dramatic improvement was after a 30 minute session.
Jackie - Dec 2013.
How doI know if I have it?
Thank you great information, I have Parkenson' and having alot of problems with it. Watching your video
tonight I found out that I have about 90 0/0 of everything you said.
Debra, great information
I have very little of moving, my memory is getting worst, I was a nurse for 33 years in a EMERGENCY ROOM. I had to retire because I was having problems holding on to things and trouble walking because of my balance was not good.
My husband helps me to do anything I need. I can still feed myself. I have to do voice typing; Because I don't have much feeling in my hands. I take it one day at a time.
Very interesting talk, but who was the speaker? What are his qualifications? Where does he work?
Hi Chris, because people's jobs and job titles change and also because there's limited space, we have taken the decision not to include researcher's job titles or positions either on a name card or in the RUclips description boxes. A quick Google of the researcher's name will always bring up the information about them, their qualifications and institution so we hope you understand our reasoning here. Information about Robin can be found here www.circlehealth.co.uk/consultants/robin-fackrell - we're really glad that you enjoyed this video and please do explore our other videos, available on the channel homepage bit.ly/ParkinsonsUKRUclips
May I suggest that the doctor's name and institution be added as a sub-title the first time he appears in the video. This is very helpful for viewers. It can easily be done using RUclips. Many thanks!
Not all disabilities are visible!
Very informative ,however there was no mention of the difficulty in articulating words , is this a symptom or just coincidence? Thank you .
I have that problem also, and I think it is quite common. www.parkinsons.org.uk/information-and-support/speech-and-communication-problems, shop.parkinsons.org.uk/collections/symptoms-and-side-effects/products/communication-and-parkinson-s, www.parkinsons.org.uk/information-and-support/speech-and-language-therapy
My mother is 80 getting good care including diet. After 2 or 3 pm she is very irritating, like after every 20 to 30 minutes she wants to sit or lay down . Really difficult to handle n she is nt co operative at all. Help me plz. She is on sinemit n Ronirol. For depression she's on 4 different med.
Hi Shahina, really sorry to hear about your Mum. The best thing to do is call our helpline on 0808 800 0303 and they will be able to advise with your mother's case specifically. I hope this helps, wishing you all the best
Hi, i'm really obliged .plz give me some time I'll definitely contact you. May i send some videos of her when she is in this condition. May God almighty protect and bless all of you. Regards.
Great things Dr Madida on RUclips has being doing for mankind, I undergo his Parkinson disease treatment plan for weeks and my Parkinson Disease was completely reversed...💫💫
I like the information re listing symptoms...but find the treatment recommendations appalling
Spiritual knowledge change our mind and body it will cut down moody behavior so we feel happy and positive .body start working perfectly change eating habits like eating fruits in morning evening vegetables cut down sugar praise god daily
I have Parkinsons.. the most common non motor symptom i
experience is light headness.
How do I treat it.
S
These things happened from our moody behavior lack of spiritual knowledge people doesn't obey other soul their body and mind doesn't feel greatful that's natural of law natural gives you happiness if you follow in the natural follow but stubborn behavior people never obey anybody so our own body turns evil and feel afraid all the time. anxiety , depression these all belong to mind. mind need spiritual knowledge who serve ourselves and others happiness start from that time selfishness never give happiness
I'm spiritual and have this maybe you should research before unleashing your sanctified , uneducated , unjust opinion on others that have enough to deal with , with this awful and yes scientifically proven diagnosis, parts of your brain are destroyed from making dopimine , the feel good chemical and had you bothered to actually educate yourself you would be clued into that. If you know not what you're talking about or have this then your spouted off hypocritical off handed and judgemental remarks does no good for anyone . The only thing you have done is possibly turn people off of spirituality that is anything but.
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Parkinson disease is a very terrible illness, my Dad suffered from it for 19 years until we finally got a help and a medicine that truly works that helped treat, cure and reversed all his symptoms. My Dad is well again//
What medicine is that?
@@debbiealesko5892 it is Dr Madida Natural PD cure
Dissolve calcium from brass shower head
I have heavy breathing problems after taking my madopar
I hyperventilate
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Seems that he/we pretty much know what we are dealing with, question is how to live well? Make it great.
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Parkinson’s Foundation
Funny how you limit you comments on some of these video. I wonder why. Is it because we know that cbd can give relief to people with Parkinson’s and the UK officials refuse to accept this? Hiding the truth? How can anyone with care for other humans want to limit something that has been show to help with symptoms? Greed, money, and materialism will be the downfall of us.
Great things Dr Madida on RUclips has being doing for mankind, I undergo his Parkinson disease treatment plan for weeks and my Parkinson Disease was completely reversed..💫