mary1947 2,071 Posted January 13, 2021 Author Report Share Posted January 13, 2021 Just a little more to members who wish to know Parkinson's UK they are our life line you can get in touch with them any time day or night you can always speak to a nurse if you are really worried no matter what they will help. If interested see there web site. A few more facts. I may have a Tremor. I may suddenly be unable to move. (its called Frezzing) I may be slow or unsteady on my feet. I have difficulty speaking or writing. I can hear and understand you. Please give me time. Parkinsons UK do a lot of Fundraising which is spent on trying to find a cure, and the above so PD people, careers, and family's can get all the help they need. I myself have arranged two bowling days with Prize's donated by Aldia, Tesco and Morrison's There where winners who had prize's but these were all donated and prize's for the rallel also given by fellow bowlers. Of cause this is just a plug for if any of you would like to help there is lots of things out there!!! OXFORD Hundreds Cycle unique cycling challenge LOCHS LEGENDS AND LANDSCAPES opportunity to experience amazing panoramas breath-taking scenary Trekking Scotlands legendary scenary Great Glen Way or Northern Lrelands Causeway Coastal Path. Most of these you just have to get a sponsor or donations. Give a Garden Party open your Garden to friends or public information for Parkinson's UK These are just a few fund raising we do if any one would like to know more then contact "Parkinson's" UK Also they did a treck to base camp Himalayas. Or if you would like any more info please send a pm. Thanking all members who have taken time to read this post. 1 Quote Link to post Share on other sites
loppylugs 8,424 Posted January 14, 2021 Report Share Posted January 14, 2021 I appreciate the info you've posted Mary. I have a cousin diagnosed with it. Many of my stroke symptoms mimic some of what you described as Parkinsons. I don't think I have Parkinsons as well. A nasty illness. I'm glad to learn what I can about it. Forewarned is forearmed. Quote Link to post Share on other sites
mary1947 2,071 Posted January 15, 2021 Author Report Share Posted January 15, 2021 On 1/11/2021 at 4:16 PM, Jill Sparrow said: She will be better now, Lizzie. Lovely photo. That little bridsmaid looks so sweet and innocent are you sure it's you Lizzy? Quote Link to post Share on other sites
mary1947 2,071 Posted January 15, 2021 Author Report Share Posted January 15, 2021 Sorry OZ but i must just post a little more on PD. "Parkinson's is when your dopamine cells start dying ot have died. This is the chemical messenger in your brain, that controlls movement. When you first see your nurse she will start you on a very low dose of medication, increasing them when needed. drugs for pd act as a subsititue for dopamine by simulating parts of the brain where dopamine is lost. these dtugs do have side effects (which I will tak about later) as not every one gets them. There is not a real test for Parkinson's as yet there is no cure just drugs to help. It doe's not just effect elderly people it can happen to any one young or old. One of the hardest thingsis having to explain to you family what will happen and how it could effect them, it's even harder if you are a young wife/mother/daughter/husband young enough to be at work or pregnant. if our last PD mag there is a young woman who was dianosed with PD age 29 then found out that she was pregnant . She now has 2 children and with help manages her PD quite well, her name is Ellie she tells her story of how it is to live with PD and have children. 1 Quote Link to post Share on other sites
Jill Sparrow 10,269 Posted January 15, 2021 Report Share Posted January 15, 2021 Although it sounds quite fantastic, the research from this lady's extraordinary ability might make diagnosis much more scientific and put an end to those who don't actually have the condition suffering the horrendous side effects of the powerful levadopa drugs at medium to high dosage. Quote Link to post Share on other sites
MargieH 7,594 Posted January 15, 2021 Report Share Posted January 15, 2021 We have PD in our family tree - in at least 3 males and one female that we know of in the last century. My brother and myself both lost our sense of smell when we were about 40, with just fleeting returns of it very occasionally. He is ain his mid eighties now and is still the same but now exhibiting some signs of PD. Strangely, my sense of smell and taste seems to have permanently returned now. Very odd. We have known (thanks to researching on the internet) for a long time that smell is often lost before someone develops PD. We were both contacted by someone doing research into PD at a London hospital about 15 years ago but after much thought, decided not to go ahead. It think it involved injecting radioactive dopamine and tracking it as it entered our brain. We did fill in all our details of famil history and sent a blood sample which she also requested but that was all. Quote Link to post Share on other sites
mary1947 2,071 Posted January 16, 2021 Author Report Share Posted January 16, 2021 They say PD doe's not run in familys but last year my bother was dianosed with the condition. At the begining of the year I lost my taste which to be honest is worse than losing your smell (thts only my opinion) I can reconise textures of food but if I close my eyes i could not tell what I'm eating, They have been saying for quite a while that you can smell People with PD but some times I think they just don't no what to say, it still seem's up in the aiir to me. They know what the cause is, but have not any test to prove it, each time you get say ache/pain loss of taste/smell, dizzyness, and more you speak to your GP or nurse and ask iif it's PD answer well maybe or might be. The best thing is to get your meds right, and to take them on time as they only last approx 4 hours and if you don't your symptoms can becom uncontrolled this is called wearing off symptoms. Also there is a downside to your meds you can get side effects, in a small number of cases some people have problems with impulsive or complulsive behaviour, ex gambling.shopahlic, binge eating and more. To be cont............. Quote Link to post Share on other sites
nonnaB 4,893 Posted January 16, 2021 Report Share Posted January 16, 2021 We have just heard from a very dear friends daughter that her father is in hospital with covid and pneumonia. He is also suffering with Parkinson's disease. Absolutely shocked. Quote Link to post Share on other sites
MargieH 7,594 Posted January 16, 2021 Report Share Posted January 16, 2021 So sorry to read about your friend, nonna. Does he live near you ? Mary, when I said I’d lost my sense of smell, this included a part loss of taste as well ((the two senses are closely linked). My taste as well as my sense of smell have both returned over the past few months after years and years of absence, although my taste is still not as acute as I think it should be! But i must admit, it is good to have both senses back again - long may it last. 2 Quote Link to post Share on other sites
nonnaB 4,893 Posted January 18, 2021 Report Share Posted January 18, 2021 Margie our friend lives in. Arbroath, he's had a difficult last few years and gradually through his stubborn attitude we sadly lost touch . We had lost his phone contact but we managed to get in touch with his daughter who is actually my husbands god daughter. We wanted to phone his daughter to ask for an update yesterday but she wasn't answering. We were very worried but eventually got in touch with her husband who said he'd contracted an infection but couldn't pin it down to why his temperature was up and down. We haven't heard today but it doesn't sound good. Our thoughts are always with him and his family. Quote Link to post Share on other sites
Jill Sparrow 10,269 Posted January 18, 2021 Report Share Posted January 18, 2021 Don't give up hope, Nonna. My 90 year old auntie has the virus and on top of her other underlying health conditions, was really struggling for breath last Wednesday. I spoke to her this morning and she seemed improved, despite having fallen out of bed last week and being carted off to hospital for the fourth time in a couple of weeks, for x rays. Nothing broken. We're a tough lot, us Sparrows. Sadly, her daughter, my cousin, also has the virus and is much worse than her mum, despite being only my age. Quote Link to post Share on other sites
nonnaB 4,893 Posted January 18, 2021 Report Share Posted January 18, 2021 Sorry to hear that Jill, it seems not a single family hasn't got someone with the virus. Quote Link to post Share on other sites
mary1947 2,071 Posted January 19, 2021 Author Report Share Posted January 19, 2021 Sorry to her you can't get in touch with your friend nonnaB hopefully you might just hear from daughter. Jill keep your pecker up no matter how hard it gets we will give it a run for it's money (so to speak) nonnaB / jill Stay Safe. Quote Link to post Share on other sites
nonnaB 4,893 Posted January 21, 2021 Report Share Posted January 21, 2021 Sad news this morning my husband ( in hospital) heard from his god daughter that her father had passed away during the night. I won't know anything else until husband comes home because phone calls to home are a bit noisy . Quote Link to post Share on other sites
LizzieM 9,497 Posted January 21, 2021 Report Share Posted January 21, 2021 So sorry to hear about your friend nonna, poor man. I’m sure his family is devastated, may he rest in peace. x Quote Link to post Share on other sites
Jill Sparrow 10,269 Posted June 26, 2021 Report Share Posted June 26, 2021 Are these Parkinson's meds, Mary? I noticed a bottle of Madopar on the pharmacy shelf yesterday when I was picking up my thyroxine. I well remember what that stuff did to my mother who didn't even have Parkinson's as it turned out! Some of these medications are worse than the illness! I'm glad you're feeling better. Quote Link to post Share on other sites
mary1947 2,071 Posted June 27, 2021 Author Report Share Posted June 27, 2021 Thanks Jill yes one of my meds is Madopar. It is unbeleavable some times what these PD drugs can do to your system and family life, I have to see a PD nurse or doc every 6 months, they are always changings my meds, but it is all trial and error, most time they get it right. The thing is we can always get in touch with our nurse or Parkinson's uk. Not sure if yout mum is still with us but like you say they can sometimes get it wrong, which is not very nice for them selves or family. Many thanks Jill for your post. Quote Link to post Share on other sites
Jill Sparrow 10,269 Posted June 27, 2021 Report Share Posted June 27, 2021 My mum toddled off into the wide blue yonder 11 years ago, Mary, and was glad to do so. After her diagnosis with a disease she didn't have, she was given 6 monthly appointments with a consultant at Mansfield Community Hospital. There were 2 Parkinson's specialist nurses there and, from the beginning, one of them insisted that mum didn't have Parkinson's but would the consultant listen? He tried her on all the levadopa medications. They were a nightmare. The nurse clearly knew more about the subject than the consultant and was eventually proved correct. Mum had Multiple System Atrophy. Untreatable and incurable. My experiences of talking to patients at that clinic badly damaged my view of consultants. I would not be inclined to believe a word they say in future! Quote Link to post Share on other sites
nonnaB 4,893 Posted June 27, 2021 Report Share Posted June 27, 2021 Jill did your mum never think of getting a second, 3rd or even 4 th opinion. The choice is always in favour of the patient. Quote Link to post Share on other sites
Jill Sparrow 10,269 Posted June 27, 2021 Report Share Posted June 27, 2021 At the time, Nonna, MSA and PSP were little understood and few medics had even heard of them. It speaks volumes that the specialist nurse had a greater knowledge than several consultants. The diagnostic test for Parkinson's involved watching the person walk up and down the corridor. As low tech as you can get. It is still much the same. MSA and PSP fall under the Parkinson's umbrella of disorders of the substantia nigra of the brain but the medication that can benefit a Parkinson's sufferer has no effect at all on those other maladies, except horrendous side effects. In the not too distant future, there will be a more scientific test for Parkinson's available. I suspect this test, which involves detection of a unique secretion from the skin, will prove that many patients don't have Parkinson's at all! 1 Quote Link to post Share on other sites
mary1947 2,071 Posted June 27, 2021 Author Report Share Posted June 27, 2021 Jill just logged on I am so sorry about your mum , your right about the PD test my first consultant did just what you said. Walk to that door humm well he said I 'll tell you now what you have got you won't die from you have Parkinson's, and I must admit the nurses do seem to know more and when you see them each six months they get to know you and you get to know them. they are like a friend and with seeing them each time you feel as though you can tell them any thing. 1 Quote Link to post Share on other sites
nonnaB 4,893 Posted June 27, 2021 Report Share Posted June 27, 2021 Like oncology new discoveries are appearing all the time. Having recently lost a dear friend with Parkinson I hope they work quickly to find a cure, although it was covid that took him. He was such a lovable character, played the guitar and loved life. Quote Link to post Share on other sites
mary1947 2,071 Posted June 27, 2021 Author Report Share Posted June 27, 2021 Sorry to hear about your friend nonna yes your right about finding a cure but there are so many streets to go down its not just tremors having said that you have just got to get on with your life. I know that I am nearer that end than i was 5 years ago. But Hay HO come c come sar. not sure of spelling but you get the drift. Quote Link to post Share on other sites
LizzieM 9,497 Posted June 27, 2021 Report Share Posted June 27, 2021 My sister-in-law had PSP for a couple of years, she fell down stairs (blamed the dog) ended up in hospital where her illness was diagnosed, then eventually into a nursing home. We visited her several times, which was difficult to witness and it was a relief for everyone when she passed away. I didn’t like her anyway, and perhaps the feeling was mutual …… but that’s beside the point! Quote Link to post Share on other sites
Jill Sparrow 10,269 Posted June 27, 2021 Report Share Posted June 27, 2021 PSP usually begins by affecting the eyesight. The mother of a friend of mine had it. The friend was a nurse who then had the double misfortune of her husband being diagnosed with Parkinson's. He suffered from hallucinations, one of which was Jerry the mouse from Tom and Jerry! It used to dance on the kitchen worktop but only he could see it! Fortunately for him, his hallucinations were very benign. They aren't all. Levadopa is powerful stuff. I reckon magic mushrooms are sweeties by comparison. Quote Link to post Share on other sites
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