CBD diagnosis

[DJP13]

I am new to the site and live in south Manchester

Recently diagnosed with CBD but have no idea of the timeline yet and look forward to any advice ,

[easterncedar]

Hi, DJP13. I'm sure someone who knows something about CBD will reply soon. I don't, really, being a caregiver with a partner who has PSP, but didn't want you to go unwelcomed for long. it's hard to reach out - at least it was for me. It wasn't that easy looking to strangers for help. When I finally tried the US PSP site, (I'm in New England) I had a bad experience, so ended up here, where everyone is great. I am so grateful!

Anyway, the shock of diagnosis is very hard to get through. We have all had that. I can sympathize. We do find ways to carry on and to find bits of joy as we go. This community is wonderful that way.

May I ask how long ago you noticed symptoms and what you are going through now? So many of the folks here were misdiagnosed for a long time before getting the proper diagnosis. You asked about a timeline - that will be an important bit of information for any one who can reply more knowingly. Some one recently said that CBD progresses more slowly than PSP. My guy was diagnosed 5 years ago, and we are still doing pretty well, although there have been some harrowing moments. He is generally quite healthy except for the PSP.

I wish you all the best and hope you will find this site as helpful as I have. I'm sorry you have cause to come here, but I do welcome you.

Peace, Easterncedar

P.S. You are from Manchester - I visited relatives there once, eons ago, and have fond memories of that city and my kindly cousins.

[DJP13 in reply to easterncedar]

Thanks for the post.

[Debbieann]

My Husband has PSP, I cannot begin to imagine how he feels and as hardly I'm always having a go at him, I don't mean to and I know he doesn't mean to upset me, seemsl like a bit of a viscious circle.

So sorry you've found yourself on this site, and I cannot begin to think how it must feel to be in your shioes, I hope you have somebody to take care of you, even somebody as 'horrible' as me!

Love Debbie xx

[honjen43]

Hi DJP13 and welcome to this site.

My husband had CBD, but it was recognized very late so we had very little time to work out where we were heading or how long he had.

From personal experience watching him, he had about 2-3 years after he began to slow down. He had other illnesses too, diabetes and also was given a Pacemaker - all in that same period. Parkinson's disease was suggested by a cardiologist! And then later his mobility deteriorated rapidly and other problems constantly occurred. That period is in my posts. I joined this site late on in the illness and found answers to all my questions here!

I don't think anyone will give you a timeframe. It is a personal thing! You will understand how quickly you are progressing - or slowly!

Think about how you will deal with the progression before it happens! Think about getting help at home, find someone who can fight with you and can continue to fight on your behalf as you lose ability or strength to do your own fighting. Talk openly with your partner. Don't hide how you feel, or don't feel, or how your brain is behaving. It would have helped me if my husband had been more open with me. Instead I was left annoyed when he was 'different' and got cross with him, until I came to better understand what was happening to him.

I don't know your circunstances, but you will benefit from home help, a wheelchair shower, physio, and other aids in due course. I found my husband resistant to getting any help! I tried to keep on top of the progression so that I was expecting the help as soon as required! I found it all takes time and paperwork! So don't be slow in asking for help.

You will best understand how slowly or quickly your disease is moving. Try and keep your assistance up with it!

As to timing! Forget about the inevitable if you feel well! Do as much as you are able - travel, have fun, get out and about while you are able! Share the love you feel with your partner and develop a bond of understanding which will help you fight this beast!

You may want to consider how you deal with what the future holds - be it at a modified home with help or in a Resthome. It will depend on your circumstances now, and whether you find yourself having increasing difficulty and change in your health.

So - there are no timescales, barriers, except those you perceive in your progression. If you are well, GO FOR IT! You have all to gain!

I hope you have a long period in which to adjust.

Will pray for you. Keep in touch.

Hugs, Jen xxx

[DJP13 in reply to honjen43]

Thanks Jen,

I do have a positive outlook and and a very practical wife and we try to see the funny side

[honjen43 in reply to DJP13]

Yes! The funny bits still emerge I found, even in delirium - and often quite unexpectedly! Keep them coming!

[honjen43]

PS. I have a sister- in-law in Huddersfield. She is coming to visit at Xmas. I hope to make at least 1 more trip to see her in next couple of years.

[alibid]

Hi DJP,

I live in Shropshire and had a friend with PSP which led me to finding out more about PSP and CBD. We have a local support group here - is there one by you too? We had a lady with CBD in our group, but she was in the very late stages by the time I met her. If you haven't already, then I'd get in touch with your local leader. What I think is useful is finding which consultants, GPs, Parkinson's Nurses etc other people have used, as that will help you find the more informed and helpful people.

Have you been in touch with the PSP Association? They can help you get started with all the paperwork etc. The sooner you apply for some of the benefits the better as soon get back dated to the date you apply. Also they know who else near you has CBD. We ended up going to visit people in Arbroath to help us get our heads round it. My friend was only 38 when he was diagnosed, and the guy in Arbroath was the closest to his age as that was helpful in terms of sorting your life out. I think PSP and CBD seem more aggressive when you're younger, but that could just be because it was close to the bone for us!

We met people with CBD at an event in London, and what I thought was encouraging was that medication seems to be very effective in managing the symptoms for some people. A spoke to a guy who didn't seem to have any symptoms when I talked to him, but he said he could barely stand if he weren't on his meds.

When you feel ready, share a bit more about your situation, as it will prompt advice and you might find out things you didn't know you needed to know!

Good luck with your journey and welcome to the site. Even though it's an unhappy diagnosis, you'll find some positives in the people you meet and the new perspectives on life.

Alison 😊

[DJP13 in reply to alibid]

Thanks for the info I appreciate your post

[Duffers]

So sorry to hear of your diagnosis. This site is great. My hubby has PSP but there are lots of people on here with CBD who will offer knowledge and advice. Also try and find out from the PSPA if there are any meetings within your area. They are a good way of meeting others who understand what you're saying or asking without having to explain yourself all the time. God bless and take care of yourself. Marie

[DJP13 in reply to Duffers]

Thanks for the post Marie

[smallshaw]

Yes, Like you I have just been diagnosed. I live in Chadderton so not far really.

[DJP13 in reply to smallshaw]

Are you visiting a specialist neurologist near you ? I am seeing Dr Langhenriech at Salford Royal ...next appointment in January, there was no change when I saw him last August ..DJP

[Marg52]

Hello my husband has had CBD now for eleven years and is still going, yes he has his bad days on those days he will rest a good part of the day. His memory is not to bad, the impotent thing is to have a good support team besides me our daughters are amazing and always around. Walk when you feel up to it most important read out loud everyday. Although my husband is doing ok you have to try and find things to do that make you happy. Like getting a pet (dog) they are great company and therapy for you. God bless you. Marge

[DJP13 in reply to Marg52]

Thanks Marge for the post I have a positive outlook and it's early days but we have a plan which will be changed as we go on.

[pzagy]

I am sorry to hear about your diagnosis, my mother in law was diagnosed this year after 7 years of symtoms and a list of specialists that I think, had their eyes closed when they examined her.

She led a normal life for 7 years with her only symptom being the inability to speak for long periods of time and falling backwards without warning. She drove her car until the day she fell out of bed and broke her ankle, that was the begining of her decline.

Doctors will not give you a time frame, no one can as CBD progresses at different rates for different people. What are your symptoms now? How do your feel?

You found the perfect place to get the REAL answers from people that are going through the same thing you are...so much love and support here

[DJP13 in reply to pzagy]

Thanks

[C3northernheights]

Hi DJP13,

I am so sorry to hear of your diagnosis, I was diagnosed with CBD in April 2015 and I must be honest It was a big shock for me, especially as husband was away working in Africa at the time. My Neurologist gave me a site to go to, so on my return home I Googled it and read as much as I could about the cause and since there is no cure I wanted to learn as much as I could in order to have quality of what time I have left. I am writing a book in Journal form which I hope to publish in the hope that it will be of help to fellow sufferers. Since being diagnosed I have had the PEG fitted to stop the reflux i suffer from and am now receiving botox injections in my hand and arm to reduce deformation and the severe pain caused as part of this illness. The fear of the unknown is the hardest to deal with. if I can help you by giving my story, please stay in contact. I would be happy to answer any questions you may have.

[DJP13]

Thank you ..will do

[EFGS01 in reply to DJP13]

Hi I was told 4 years ago that I had more than likely got CBD - never heard of it and did the stupid thing of looking on Google. Frightened the life out of me as I thought omg but my consultant has said I am in very early stages. My neuro consultant and Parkinson's nurse have been very supportive. I joined research programme in January and was told that someone else on the programme has had CBD for 17 years!

I have changed in the last 3 years but mild changes. Mainly my walking and fatigue so decided to take early retirement from work.

Hope we can share and support