After reading this then please do not put in any law suits, I really am one of these stubborn annoying women that I would also actually grow to hate, Ataxia to me was another nail in my coffin!
That said, I want to help anyone that I can and at my tender age of 56, oh apart from the deliver guy that really did say to me and I quote “I thought I was only delivering to old people” I could not resist that!
It seems that the people that know me actually think I have something called a Sunny disposition; I actually have no idea where they got that from.
I have pretty much gone through the total lockdown on my own and I really am more than happy to talk to any of you that would just like to talk,
I actually tried to sign on with my local council as I couldn’t deliver shopping to people that I was actually included in! Then I could be no help at all!
I will admit that I would really like to see an actual person other than a delivery driver, but I love to chat!
I really am not sure what else to say! xx
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DeniseLB
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A very good post and thank you for being there for people that may be struggling.
Welcome to the group, DeniseLB . Thank you for introducing yourself to the group members. Please feel free to continue posting, commenting, asking questions, participate in our word game puzzle postings, poetry, book postings, trivia postings, artwork, etc.. If you have any questions, we will be happy to try to answer them to the best of our abilities.
The Moderators and Administrators let the Members decide if they want to join a group. HU has a lot of different groups to join and pick. There's groups for different health issues. You can click on the search box at the top of the screen and enter what health issue you're looking for,
Denise my lovely.... Activity2004.... is an actual person, as am I....... if you want to chat, you can message me, I live in the Uk.... Activity2004 lives in the USA!
I’m doing ok darling, still in lock down, not been out for nine weeks, but have a face shield(not a mask) to wear when I eventually go out..... Activity2004 is a lady, she is an admin team member for a HU community(but I didn’t tell you)lol 😀🌈
Hi there, I see you have Ataxia, I bet when you go to see a locum Doctor, they get worried. I notice you say, you have pretty much gone through lockdown on your own. This community is a supportive community and we are all real. There are plenty of post's to get involved with or post a topic of your own. We are here to help each other. xx
You have no idea that I love you for that, but I am guessing that you are not in the UK?
I do agree that we are out to help each other and my post was meant to be for new people to our condition and I really could not help myself as a really annoying person, Have we just passed into another time zone?
thank you for sharing, but does that actually have any meaning? And given the little fact that I am in the UK and you are not it is starting to feel a bit weird!
Now sit down quick, I don't want you flaking out, I am in the UK. Episodes of ataxia can be very debilitating and affect each individual in many ways and can also be caused by many conditions. I am a complex patient myself so it is very easy to identify another person with complex health needs no matter the diagnosis. I am very glad you are joining in and maybe your next post could be how your Ataxia affects you and if lockdown has had an effect on that. You will find some discussion and support on here, so just join in. xx
Is there any other way, I tend to try and have chairs close, but! there is always a but I did actually break a garden chair doing that and it took a helping hand to get me off the floor! I have worked out that I put out a bad post but I really am annoying! About 2 years ago I fell over on the common opposite my house and I really did sit there for nearly 3 hours until I did work out that I could get up, I guess I am still not doing it, but I am okay and to me it really is just another thing in my life that I have to cope with, I guess part of this is that I don't want to be depressed about it and in my own way I am trying to reach out to people that feel the same!
Everyone is here to encourage and support each other with their respective medical problems and questions, and even to chat, joke, laugh, upload photos, music or whatever it takes to help each of us through this lock down..... I for one find it keeps my brain active, and makes a change from reading, watching tv, or listening to music..... have a lovely day Denise! 😀😘🌈
I am in the UK, on a couple of other HU sites, for my diagnoses of Asthma and Crohn's Disease, just enjoy reading how other people are coping and getting hints and tips. You might be able to help with some charities who have people who telephone others on a regular basis to check on them, I have had weekly telephone calls through Age UK for some time, as have been house bound for a few years and this has helped no end. The time zones on here are fun, as someone who often does not sleep well I am often on here more when America and Australia are. If you click on the Avatar picture, you will find out more about the people who are talking on here.
Okay I really am not a arse and yes I have been looking into those things and it seems that I might be joining another group! My Ex by the way which is now my best friend is from America and my other best friend lives in Sidney so I do actually sometime never go to bed, actually what is a bed!
I am responding to you as I know about Ataxia as my son aged 39 was diagnosed with Friedreich's Ataxia at the age of 20 whilst at university.There is a great deal of help from Ataxia UK which is a charity supporting people with Ataxia.If you look on the website you will find information there including a helpline to ask questions. Also Health unlocked,Ataxia is quite a good site.
It is a rare condition and when research was carried out it was estimated that only 9% of the population had heard of it.Hope this helps but please message me if you want anymore information.Take care Ann x
Oh my dear I am so sorry that I put out a really arrogant post! I do understand the condition and I have been living with it for 5 years now and possibly longer as I also did not know what it was. I am a bit of a shouter, but I really do mean well and my heart is with you for your son.
Good morning DeniseLB, firstly I come from the chat company group Due to the current crisis and another health issue I have become housebound, all my normal groups and freinds have been locked at home for safety. I have been on this site i.e healthunlocked for a long time prior to that I was a member of BLF forum. It is unusual to find someone who only wants to chat. So chat away , I thought maybe a chatline for the isolated might be good till we can meet again. You are around the same age as my daughter. I've just done my first virtual meeting with Arthritis Action but its not the same as going out and socialising. Like yourself my movements are limited, till I can have an op and recover. It is amazing how isolated people can become when forced to stay home. What are your hobbies & pastimes normally? Do you have pets? Do you go out at all? I like music, theatre, holidays in England, gardening, food, socialising, TV, computer actiivities and I did used to represent older people to the authorities. I can still do jigsaws, reading is a bit more difficult, I have a pen pal in Essex, I am a member of the Yours magazine forget-me-not group, secretary of two groups for older people. This virus although very dangerous as caused numerous other problems don't you think. ? Hope to chat when you are wanting to .
Thank you for your honest, straightforward post! I certainly can relate to your situation. Having Cerebellar Ataxia and Parkinson’s, is a daily challenge for me. The frosting on the cake was having to sequester in place, for months on end, cutting out most human contact, physically, because of Covid-19. The lethal aspects, combined with the contagion ability, in the air, and on surfaces, along with the lack of being able to contain the spread of the virus, and those who are most vulnerable, makes for a major adjustment, for most people, one way or the other!The people sharing their stories, and practical advice, have truly been my biggest source of support. For me, the lack of help, understanding, and concern for well-being, within my surrounding medical community, is most disappointing! For example, for 2, fifteen minutes sessions, per year, seeing the neurologist, just doesn’t seem to help much. Other than getting prescriptions, I get zero advice about how to manage the practical aspects, of daily living with these ailments. I do get good practical advice, and understanding, and support, from contributors to HealthUnlocked.com! I’m sure you will find this a good resource to have, especially when frustration and rough times occur, as they are bound to do, with the uncertainties of living with Ataxia! Welcome to this forum/blog!
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