Sadly my wife was diagnosed with CBD few months ago. My wife & I attended the family & friends conference in Windsor. At this meeting there were 4 people with CBD. I spoke a male who had CBD at the break from Thornton in Somerset, at the time I didn't think to ask him his name or details, now I would love to get in touch him. If you contribute this forum and you're that person I would very much like to speak to you.
My wife is very tearful and anxious although I keep positive and reassure her that I'll be there for her come what may she worries about being paraplegic. I need help, If someone out there could give any guidance how to help my wife and her anxiety I'll very much appreciate this..
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Amth_1948
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Prepare for what the future will bring but don't forget to enjoy life now. I'd work on getting your wife's wishes on what she'd like done on paper. You will probably be playing a waiting game to see what symptoms arise and then react accordingly.
He tells me by email that he has responded to you but had said last night that I can send his details to you but I have got to find out how to do it privately so may take a bit of time till I get advice from my daughtger. AliBee x
My wife just took CBD by the scruff of the neck and has kept fighting. You just take everyday as normal. If you hit a hurdle find a solution and just live your life to the maximum.
Is the Windsor you were in the UK or Canada? Depending where you are there is different kind of support from your health public agency.
No one wants to find out they have a progressive incurable disease. There is an adjustment period. If she has no other major health issues she could have many years before her limitation take over.
Exercise is important. With PSP it is use it or lose it. I assume it is the same with CBD.
You and your wife are lucky (!) to have an early diagnosis. Anyone who has a terminal disease faces the same very scary road!
Face facts, put your affairs in order, write your bucket list, and enjoy life together! Plan and fill life with memories while you are able!
There are stories of inspirational love and companionship on this site! The more you conspire together against CBD, the greater is your understanding of its effects and of each other.
So tell your lovely, frightened wife she has more friends here. Tell her about us too and tell her to join. She will find others who have CBD too who will help her - as well as you!
And try and change the fright feelings to FIGHT feelings! Be ANGRY! Prepare for a hard battle! Take all the advice from here and elsewhere and take action!
Live, laugh and most important, love! Be transparent with each other so you know how you are thinking without speaking.
I did not have that opportunity and we did not talk much. Nor did we know or understand what was happening until diagnosis was made close to the end.
So make the most of life whatever it throws at you! Enjoy your journey despite the circumstances!!
It was almost certainly me who spoke to you and your wife at the family get together. I am more than happy to talk or e mail but I haven't got any details. If you phone the PSPA help line on Monday they can send through your details to Somerset an we can get in touch. All the best
Hi Retired; You can private message any member on this site by going up to the little "chat bubbles" icon on the top middle of the screen. You use the member's member-name: you don't need to know their private email address. The website will send the message tio their private email.
I am so glad that I was right about the person I thought that it would be. I understand that he has now responded to you privately. Hopefully your wife will be able to join this site too and find the love and support that I find from it. It is a lonely place otherwise fot the person with CBD and the carer. Love AliBee x
Used the help button and went to security to see how I had to do it and have now done it and sent you his contact details, so you may need to use the help button too to see how to read it. So glad I was able to help AliBee x
I agree entirely with the comments made by Longen43. If you look on the PSP web site Personal experiences you will see the bucket list safari trip we did a couple of years ago and we are at present booked to visit Peru next year. Keep fighting. Once you have got over the first few months after diagnosis then fight it all the way, All the best we will be in touch via the help line
Dear Amth , I'm pleased you were able to make contact and am sure you will find his advise and support invaluable, I also met up with a lady on this site whose husband had PSP, we have both lost our husbands now but remain firm friends. Our friendship was a great comfort to me, she was also a very positive person and it taught me a lot to watch how she managed their/her life, her husband was towards the end of the journey when we first met and watching her made me realise that I too could find the strength and determination to manage life with these challenging diseases. I wish you and your wife well.
Can you contact me on site need more information. I in dark. Or Emloyees thunderlighting13@yahoo.com. I show up as zenith I disguise I female. My hubby has this. Chokes trouble swallowing now problems speech. I newby. Can u help I appreciate it.
Our GP recommended Ruth went on an SSRI tranquiliser from early days and I encourage her to keep taking it everyday. She is on Sertraline 50mg, but there are many other options - Citalopram is popular. It does not seem to affect her negatively in any way. My view is that there is no point being depressed on top of everything else and it definitely seems to help.
Hi. Did you get my private response sending you the details of the man you met that you wished to contact? I think we might have met you once at Wherwell? Kind regards AliBee
Dear Alex. I am so glad I was able to help and that you are now in touch with Mike. I have not found your response as I am not very good at walking around chat lines. You can ask Mike to give you my email address if you want.
I’m getting use to the forum myself. I’m amazed how helpedful people are. It’s a family at a distance. My wife & I are leaving for Palm Springs in California tomorrow to get some sun. We’re going to do much as possible before it gets impossible to travel.
Amth...my sister too has just been diagnosed with CBD...we live near Guelph, Ontario and have found a 'support group' in Burlington which meets the last Monday aft. of each month...My husband accompanied my brother-in-law there in December and they are planning to go again Jan. 28th...I think this support group will be very helpful to us and I plan to learn as much as possible about what to expect for my sister's future care as I will be trying to support them both as much as possible...Perhaps there is something like this in the Windsor area? You will need lots of support and already I feel blessed to 'talk about' my sister and get feedback..I hope you will find the same...If you would like me to ask about possible support groups in your area at their next meeting..please let me know...I know this will be a very painful journey for us all...but if we can support each other...even if it's just expressing our fears ...then we will be comforted at least to know we are not alone...so sorry for this terrible diagnosis for you and your wife....
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