Loathe am I to criticise the NHS in UK as it’s such an amazing privilege to have free health care but following the messages from forum users elsewhere in the world I realise that sometimes we get what we’re given and don’t necessarily get the best healthcare.
I m scared I’m blindly heading towards a rude awakening at some point in the not that distant future unless I get professional help.
I’m 62 was diagnosed about 5 years ago but was being diagnosed since 2014. I take a lowish level of Madopar (100/25 x 3 daily) thiamine protocol, a mixture of supplements that I’m not good at consistently taking but I try ( vit c, d omega 3, cucumin, cinnamon, lions mane, quercrtin or Mac)I try and eat well and I exercise regularly but not consistently ( dog walking, bounce, Pilates) try and do 3x a week plus once a day dog walk.
Got a tremor not bad with meds - hardly noticeable unless stressed- hard to control off meds. Stiffness bad off meds but otherwise doing okay. With exercise I’m okay - without I quickly decline.
Haven’t seen the neurologist since pre Covid - don’t have much faith anyway ( didn’t ever mention exercise at diagnosis as a part of maintenance !)
I follow Laurie Michley’s school and teachings - am following this forum avidly and LOVE you guys. I check out as much stuff as I can.
Is there a Uk Laurie Michley? Someone I can work with - in the past I looked and looked- its a lonely old struggle without you guys - I feel a little professional overview would help but I don’t know where to get it
Any ideas?
Sorry if I’m a bit quiet on here - juggling young kids and work and I’m a quiet sort of person
Thanks
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Annieartist
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Dr. Mischley does see patients from the UK. I've been reading old posts here and happened to come across that information yesterday. Her office has confirmed it by telephone just now. She is not accepting new patients at the moment (and will only accept those diagnosed with PD), but she may start again at the end of this summer. If you'd like to be put on a waiting list, call 206-525-8012.
Best of luck! I sympathize with your search, as I am also on the hunt for a new doctor (primary care though). It can be a bit of a challenge to find someone of like mind, but well worth it.
I’m sure you will find alternaative practitioners in UK perhaps they just don’t promote themselves as other countries do. For instance there is this person in London who has practiced for many years. parkinsonslife.eu/parkinson...
Lucille Leader based in London works with Parkinson’s patients. She does complete blood checks for deficiencies, recommends supplements and diet, as well as excercise etc. She has written lots of books all on Amazon. She is getting older now but last I heard she was arranging a workshop online so she doesn’t appear to be retiring!. Her email is denorgroup@gmail.com
Was thinking we might have a cup of tea but that’s about as far away as you could get.😕. From my own experience Annie, the best protocol is to supplement with selective antioxidants, eat as infrequently (plant based) as you can and exercise HARD every day.
Thanks - where are you based? Pre Covid I traveled around a lot!
Yes exercise- never enough but amazing how effective- I was sick for a week so little exercise- toes began to curl. 10 minutes into a bounce class and it went. I had still been walking
I’m in Birmingham Annie. I hasten to add that while my recommendations are largely sound this doesn’t mean that I’m persistently capable of applying them (especially the eating infrequently 😂).
Yes I can preach with the best of them but in reality- supplementation being my worst. Just about there with B1 5 Daly’s a week but generally rubbish
Shocked me though when I plotted a support chart for my PD that neurologist was way out of the inner circle. Had a good PD nurse but she’s part of a team and don’t respect the others. The forum came much closer to the centre- there’s usually someone with a suggestion.
Do you know what I mean about UK? NHS great but sometimes it doesn’t give you choices. Obviously harder in times of COVID
Best antioxidant?
Best exercise? I do aerobic exercise twice weekly but think I should up it. Was doing Figure8 dance and qigong almost daily for a long while but then life got busy
Just want to make sure I don’t walk blindly into full on PD. I’m better now than 3 years ago but sure I could be better
I think you are on a good track. There is a prominent Israeli neurologist that recommends whenever he is interviewed for people with PD 300 min exercises per wk, which he says would cover aerobic, weight-lifting and stretching. I also noticed that many physiotherapists with online sessions for YOPD recommend to challenge yourself during exercise either with challenging complex movements either with some mental challenge during the exercise execution. Qi Gong, particularly medical Qi Gong is great too, and so is yoga and meditation of course. B1 is very good, mannitol is a powerful antioxidant and has many testimonials of positive effects. A recent safety trial showed no protective effect but as the researchers wrote, it was not designed to do so, and they are planning to move on to next steps in researching it.
I'm a big follower (well I try to be!) of Laurie Mischley. Just wondered whether a few of us would be up for a UK Mischley support/advice Whatsapp group? Drop me a message if you're interested. We could even have a zoom meet-up?
Hello, That’s a great idea. I managed to get a visit with a colleague of Dr Mischley, sharing her Seattle clinic activity, Dr Evans. She is a consultant in gastroenterology if I understood correctly but trained with Dr Mischley in Parkinson’s nutrition. And it’s the same clinic so it’s perfect. The first visit was $200, it’s expensive but cheaper than « private first visit » in the UK.
May I ask what you guys have instead of beef and chicken ? IYou know that per the research cohort it’s associated with « worse » outcome. I speculated that people in the US eat « much » more meat than in Europe and Mediterranean diet. The team of Dr Constantini doesn’t recommend any diet. Personally, I am struggling without meat.
Best antioxidants are those that support mitrochondrial function and this is why the intermittent fasting is a good idea: Alpha Lipoic Acid, Aceytel Carnatine, Coenzyme Q10 and Resveratrol are good opening gambits.
I am actually in the same situation but in FRANCE,if anyone knows any functional medicine Dr/neurologist or a french Laurie Mishley that would help a lot.Thanks!
Hi from neighbouring Ireland, Annie and the rest of the group here. Ill follow this thread and if you decide to zoom together i wd love to join in. I can relate to feeling that free medicine has some lacking. The HSE (irish health executive)is quite similar to the NHS but even lower quality so i have had to figure out lots by myself. It took me 3 years to get diagnosed and that was cause i went privately to a neurologist online.I've been a vegan since 2010 and a vegetarian 4 years prior. I walk doggies like you and do some dance and qi gong. Now i eat some fish and organic eggs...This forum is amazing though, with incredibly smart and wonderful members and sometimes nourish our souls with warmth and good humor as well as information that many so called neurologists ( i had a horrid one) don't have. I think you are doing quite well for what you share. We can all do better and sure we keep learning, tweaking, and discovering things together. Lovely to have you here. Welcome and keep coming back. Stay well.Chelo
An acquaintance of mine after a stroke could not recover and constantly felt tremors. The doctor prescribed her pills, but they only worked when she felt aggression or anger. She also felt tremor when she picked up scissors or a needle and thread when she was calm. She couldn't concentrate. Eventually she decided to stop taking the medication and started taking only vitamins bbgate.com/threads/recrysta.... Tremor is more of a psychological problem and our acquaintance thought so too. She had psychotherapy and had been living without it for a year.
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