This is the reply I wrote today, it's buried in another thread.
Some folk seem to think I am trying to silence others. One poster posted that, "We are all adults and can make our own choices." That is just too simplistic. Damage is being done - People have been walking away.
I am not trying to silence folk. As I write people have told me they are leaving the forum and others that they are going silent. Quite a few are deeply unhappy about the trend of the posts. None of them have felt able to post their thoughts.
This is my last post on this subject. I will not reply to subsequent posts on this thread. I don't want to inflame this matter any further.
Go back and read my posts on this subject - They have been a plea to make this a place which is more inclusive - Not about exclusion.
Please, just think about this post, for a moment:
"Hello ***
I think you have misunderstood my posts because you have explained them back to me missing out the subtleties.
I am not trying to 'silence' anyone.
It is not whether or not folk here are tolerant of others views, such as an Islamic prayer, but whether we have created a space where such a person would feel comfortable posting such a thing. There is a huge difference between the two.
The UK is a very multicultural society. Much more so than many of our American friends here might realise. (Yes, I have lived in the States). Many of us realise that it's important to centre on our common experience of humanity. This gives more space for those with different persuasions. I believe it may be more common in the States to bring Christianity into the mix on a more everyday basis than would be the norm in the UK. And, that is a cultural difference.
Many times I have had posts from people of markedly different cultures who have felt uncomfortable posting on the public forum and have sought help privately.
And, where are the ethnic minority posters on this forum?
As I have said in previous posts: It is good to celebrate that which gives us hope and strength. However I have had a number of messages from people who have said they feel uncomfortable with the extent of the shift toward a particular view and away from our common humanity and struggles.
Three people have told me they are leaving the forum. One of them a very well known poster who is much loved here. Others have decided to remain silent, but they are not happy.
I am not trying to silence people.
I am merely asking for a greater sensitivity.
This is my last post on this subject.
Kindly
Kevin"
Written by
Kevin_1
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No, I am not leaving. Just not posting on this subject anymore.
Thanks for your concern tho'. It's appreciated.
Warmly
Kevin
I sort of miss the whole kerfuffle about the dissension on here. To me this site has always been and will be solely to disseminate information about PSP and CBD. Everything else is an aside.
Please don’t leave the site or go silent. Your input is just as important and meaningful as everyone else’s.
During Larry’s illness I found out so many things on here I never would’ve been told by his neurologist or even the hospice care of people. It was a great help to me.
With his having died I am using this site now as it means to grieve. To also share my experiences having dealt with PSP as a caregiver.
Let’s all take a deep breath and exhale and go on.
• in reply to
Jeff sharing information is so helpful... that is why l am here too. Together we learn new ways to help our loved ones & be supportive to others too. I love this group of understanding friends! Sending Hugs... Granni B
I personally don't know what I would do without this forum. I have written and read posts with tears in my eyes, because this disease that we are ALL fighting, just requires every fiber of our beings to fight with. It simply has been a lifeline for me.
Please, perhaps the Covid 19 quarantine is taking a toll on all of our patience. Let's save our strength to support one another.
I am so sorry that all this controversy has happened in this wonderful group. I haven't been a member as long as many of you and have been away for a couple of years, but I'm back. I had to throw in my 3p worth. Yes we have to be considerate of everyone's faith but we all have free speech and I hope tolerance. I am not a Church goer but I do consider myself spiritual. There has not been a carry on like this since I came on this group. I went and looked at some of this person's posts in other groups. First of all, nowhere does she say she has PSP or similar neurological disease!!! I don't know why she had this big problem of that post in question. . In some of her posts in other groups, she has brought up the name of God and her guardian angels!!!! So what's her problem?????? She appears to be a very sick lady with numerous ailments and I am sorry for that. I saw too that she had left another group because "the people weren't nice to her". As they say it only takes one bad apple! We are bigger than this . We show that every day as we cope and we cope in different ways. OK I'll shut up now
Yes, Kevin, yes. You are wise and kind. I urge folks, please, to stick with the community and to be generous with one another. These are hard times everywhere and everyone is feeling it. There have been fractures here in the distant past; there has even been what seemed to be willful mischief- making. We have gotten through it, together.
Now, what can we do to ease our isolation? I am spending lots of time on the phone and binge watching, like everyone! I am going off to look for migrating ducks later today at a safe distance with a birder friend.
Be well, everyone. Be kind. "We are here to help each other get through this thing, whatever it is." (Mark Vonnegut)
I have to agree with Kevin that the flavour of this forum has definitely changed in the 6 years since I joined. It was full of information of how to get funding, best equipment, getting help and support from carers, volunteers etc etc. It was always full of humour, tears and a place that felt warm and safe, like a security blanket. I lost my husband 2yrs ago and have remained on the site to try to offer help and support to others going through a very tough time. I do believe cultural differences between different countries is to be embraced but not at the cost of feeling excluded. I think we all need to be aware of cultural differences and hence be mindful how we present ourselves. I realise that we all feel the need to express ourselves and our beliefs and I don't think any of us mind soft references to our beliefs, sexual orientation etc etc but I think we should be aware that not everybody has the same religious or political view and that it can feel that certain specific views can dominate and stop people from joining in the conversations. I hope this doesn't upset anyone, it is not meant to hurt or be critical of people's views but I feel it is important to be mindful that the purpose of this forum doesn't get hijack by those with very specific viewpoints that srent always acceptable to others on the site. Thankyou for listening.
Hi Kevin. How I wish I could write so eloquently as you but I hope I can post with some heart felt comments. This forum, as far as I am aware, is for those affected by this horrible disease called PSP/CBD., Whether you are the one suffering it or whether you are caring for them, or indeed, as in my case, who have lost a loved one to the disease. At no time, during the introduction phase, was there any questions on religion, religious views,ethnicity etc etc. The common bond for us all is, the disease. Can we not simply partake of the forum with our focus on that? Ask questions, offer advice or suggestions and relate experiences of the disease. My Dear late Wife was at a fairly advanced stage of PSP when I found the forum and I have not been a prolific poster, but the advice and support I gained through the forum, was immense. My Wife has been gone for two and a half years now, and I genuinely believe I am still grieving, painfully, but I sincerely feel that this forum has kept me sane and safe. There has never been any judgement of any kind over my posts. The comfort and support I have received from members is immeasurable, often from you Kevin and many others. For that, I will for ever be, grateful and in their debt. Please, can everyone here, simply use the forum for its intended purpose. To help, advise, offer support and comfort and share our combined experience of living, and sadly dying from the most horrible disease we can imagine. Thank you all. I don't care one jot what your beliefs are, or your cultural background. Let's stick to what we know best.
Apologies for the rant but that is, simply another plus for this group. We can rant without fear.
May you all be blessed with some peace and comfort.
The different cultures, religions, and opinions expressed on this site, are a great part of why I love it. We come from such different parts of the world and backgrounds, yet our experience and feeling are now So similar.
By best to all of you during these difficult times.
Kevin,I feel I must have missed all the undercurrent on this. Without you and this forum,the info and help I would be lost completely. Looking forward to more from you. Hugs Jayne xx❤️
This forum always offered me the most unbelievable support! From friendship to advice! Understanding about hospices, chc, district nurses, carers allowance, attendance allowance, marie curie nurses and mostly understanding psp! And then gaining lifelong friends!
Organising ‘meet ups’ in London and from that, others doing it around the UK and in fact further afield! Friends travelling far and wide from London, Bristol, Devon, Ireland and Spain! And others doing it in America! Really quite unbelievable!
In one beat I feel pure joy at the simply gorgeous people I’ve met and those around the globe that have made lifelong friendships!
And then.....I feel sad for the necessity to have deleted all my posts! And even worse with how I feel right now , considering the maybe to leave......
If it wasn’t for our loved ones, we never would have met......think.......how sad would that be??!!
Take something good outta of everything that bad
Let’s get over this s**t and get back to what we are......FRIENDS THAT HELP EACH OTHER, DAY AND NIGHT with this despicable disease and with the s**t that everyday life throws at us all
You and Georgeg put this so well. I wholeheartedly agree with both of you. I've always enjoyed the international flavor on this site, almost as much as the help I found here. I am in the US and feel that people in this country are not nearly as tolerant of other's beliefs as we should be, unfortunately. I think this has served as a good lesson for all even if it did get a little uncomfortable.
I agree that the tone has changed recently which I feel must have been uncomfortable for so many of our valued posters. I'm sure there are plenty of other places that we can express our religious beliefs, if we feel a need, that won't offend. We should keep HealthUnlocked for what it was intended, help for people caring for or suffering from PSP/CBD. I found it immensely helpful when I wasn't getting much help from the medical community.
While I almost never posted on my own, I think I read every post for a couple of years until my husband died last May. I only wish I had found it earlier. I hang around now in the hope of helping someone else when I can.
Thank you, Kevin, for all you bring to this site It wouldn't be the same without your input.
I think I should add that I too enjoy the fact that we are international and that the calm wisdom, sound advice and open hearts of many American friends here have been part of the chorus that have got me through some of my most difficult times.
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