Alex my husband is my carer, Alex is writing this on my behalf. I was diagnosed with CBD in August 2018. Prior to being diagnosed I felt something was wrong as I was losing the use of my right hand, my writing was getting ineligible. It’s hard but I try to use my hand as much I can to avoid it being a alien hand. Alex gets me to do easy household chores. If I’m honest, I’m not looking forward to the future, it’s not a nice illness. By profession I was a nurse. Been a nurse I took it upon me that i’ll be the family carer but the rolls are reversed now and I feel awful.
On Friday 1 Feburury I met some lovely people at the Brass Monkey in Victoria London. It’s lovely to know there’re many supportive people who can help me and especially Alex, I feel he’s the one who will need the most help. He tries to be Strong for me but know inside me he feels awful.
I’ve an appointment with Hugh Morris Queens Suare in March I’ll let everyone know how I got on.
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Amth_1948
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Welcome to the group, my wife was diagnosed with CBD in 2013 and I've been her carer since then. Tiring it is but can be rewarding and deepen's the love. Make sure your husband gets a carer's assessment which he is entitled to by law. God bless. Ken.
I'm very lucky I've Alex. Alex gets embarrassed when I say how good he's to me. We've been together for 49 years. We both met in the RAF. Alex is a good husband, like I say I'm very lucky.
Hi Anne thanks for your reply, it was good to read that you and Alex had a good day at the Brass Monkey. I'm also ex RAF. I joined in 1957 as a Boy Entrant. I left in 1963 and married Doreen in 1964.
In July as I was caring for Doreen on our wedding anniversary I kept thinking "I promised to do this 54 years ago today and I won't let CBD cause me to break my promise now".
From reading your mails I can see Alex has the same love.
Welcome Anne itv wás lovely to meet you and Alex at tThe Brass Monkey on Friday, it's such a lovely thing to be able to put faces to names. I know as a sufferer rather than a cater it must have been difficult to listen to some of our stories, especially those who have lost our loved ones recently. I commend you on your bravery at being able to face up to the journey ahead, my husband never wanted to do that, especially at the beginning, it made it very difficult for me as his carer who then had to face things alone. Apart from that, these meet ups are always a good giggle in a very informal atmosphere, especially as the wine flows, I felt in a very good mood on leaving and had difficulty not falling asleep on the train as I carried on my journey to visit my sister, worried that I may miss my stop. If you read back on Kevin's posts you will see that he was often a scribe for his dear wife Liz, I think you will find it interesting. Take good care of yourselves and try your best to do all the things you enjoy to make wonderful memories.
Anne is was lovely meeting you and Alex on Friday, we had a lovely chat and you are one amazing lady, we will all be here for you and Alex, will will support you both, hopefully we will see you both in May, I had such a lovely day on Friday with some wonderful people xxxxx
Me again, also check out Bargiepat who until very recently, was a regular poster on this forum. He is inspirational as he is a sufferer and kept us all informed and amused of his travels and wonderful photos, despite his difficulties of getting from A to B. You sense his warmth and humour and would have loved if he could have met up with us all. He doesn't post now but I know he checks in ( don't you Patrick?) I think things got a little difficult for him as he lived alone and moved to a place where he could live safely. Also check on jillannf6, also a sufferer who is quite a character, she no longer posts but often 'likes' postings so we know she's still checking in. Take a look I'm sure you will find inspiration from them.
Oops also check on daddyt who has written chronicles of his journey that are published and can be purchased on Amazon. There is also mottsie, both are regular posters on this forum and helps careers to see things from their prospective. Xx
Welcome to the site. Dad had CBD, given Dx in Jan 2016. He's symptoms were very much like you are describing. It fact it was the loss of writing ability that prompted a talk about getting a PoA/healthcare in place. I am glad you got to met a few faces behind the screen at the Brass Monkey. Ask any question, nothing is too small or far fetched, someone will reply rather quickly.
I got lightweight vacuum and iron for the old bat and this lengthened the time for her to do things by herself. Keeping normality in life appears to delay the the onset of symptoms. We still go out most days and carry on as usual.Do not give in and just adapt things to suit your needs.
Hi Anne, I found this site in 2016 when my husband was diagnosed with CBD after no relief with Parkinsons meds. My husband and I have lived in New Zealand since 1969.
Our story of CBD here is brief. At the time I joined there seemed to be nothing available that would give me knowledge, advice and support about CBD.
This site has been invaluable and through it I learned how to deal with its effects and understand a little of what was to come. My love did not appear to want to know at any part in his deterioration, but then he often ignored things he could not deal with! He immersed himself in books, adventure fiction, until he could no longer read.
One thing I have learned is that no 2 people experience the same symptoms or timeline. Each is unique. So even though our journey was short, the journey is not always so.
And the reason I am still here is the tremendous support from everyone all over the world - no matter whether you are career or sufferer, or what stage you are at, or whether you have had a bad day and just want to vent, and need a shoulder to cry in or an ear to listen!
Welcome to the site! I hope you find it as informative and as supportive as I have.
It was lovely to meet you at the Brass Monkey on Friday. My hubby has PSP and I have found great practical and emotional support though this forum and our meet ups.
Everyone’s journey through PSP /CBD is a little different , but this site is the place to ask literally anything at all and someone always has experience of similar situations. Do join the PSP Association too they have great info on their website and run Friends and Family days which are really informative .
I got my hubby early Physio and Occupational therapy assessments and the exercise and equipment they provided have really helped maintain our quality of life. Also think about exploring local hospice provision and see what they have to offer many have great day centres where you can go for a break from Alex ( sorry Alex) do some art or music therapy or complimentary therapy, chat with a counsellor etc.
Do keep posting I would love to hear about your forthcoming river cruise the itinerary looked amazing.
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