I have been diagnosed with CBD, 3 years now. Have had to give up work due to deteriation at age 59. Anybody else my age? All seem elderly,

[tisha1953]

[peterjones]

hi tisha that is young to get this and a great shame because you have all the years in front of you

im afraid that we are a bit older but i think we are young at heart i should not have said WE because there may be people younger than myself no doubt there is i never really ask people there age\\ well mate i can tell you that i do not know much about C.B.D. perhaps you could tell me

your feelings about it i am a good listener if you want to get something off of your chest fire away

i will be here \\ take care good luck peter jones queensland australia psp sufferer

[springbank]

Peter - CBD is virtually the same as PSP but affects one side more than the other.

Tisha - my late husband was diagnosed wirh CBD at 62 although there had been symptoms a couple of years before. Far too young to have this terrible disease.

Take care all of you,

[tisha1953 in reply to springbank]

Thankyou, take care x

[lepman50]

Well....Mine started in 2005, and I'm now 50 going on 51 in june...so that makes you the senior ......LOL.....I don't have CBD.....But that dose fall into alot of the same Symptoms as PSP. ....

[tisha1953 in reply to lepman50]

OK, so i am older, but in my brain, such as it is, i still feel 40 and not ready to give in to it, some days are worse than others, would like some hints how to deal with it.? Hope you keep well, take care x

[JudyJ]

I was diagnosed 8-12 at the age of 54 (youthful in spirit, but my body's betraying me). I'm convinced the symptoms started in 2010, possibly sooner, but that's when they started popping up quietly & sporadically. My vision was especially hit hard beginning back then. I have PSP, not CBD, but I too, understand they're very similiar; in fact, my Neuro considered it as a diagnosis for me for a bit. He did say I'm on the 'younger side' of getting this. But he also stated he believes it's misdiagnosed a lot because Doctors tend to limit their view to these disorders in the elderly.

I, too, haven't worked in a very long time due to my limitations. I'm deemed "permantantly disabled" and my only source of income is Social Security.

I don't know if you've experienced the same, but the generation ahead of me are on the younger side themselves. That generation tended to get married quite young and start having children right away. My father has passed, but my Mom is only 75; many other aunts/uncles are younger than her. And many of them have had serious health problems that side-lined them. So I've seen what "getting older" can be like and it used to scare me; still does a bit; but the irony is at 54, I'm sicker than many of the generation ahead of me. Life is a lot of things; fair isn't one of them.

My biggest challenge right now is acceptance. Because I'm still young. I've been consistently frustrating myself and getting in my own way by having expectations of myself that were attainable 5 years ago, and thinking I'm still at that level of functioning. Then I get upset and mad when I accomplish 10 percent of what I thought I should have accomplished. I'm just becoming aware of this as being a real problem for me over the last few months. I need to let go of the past, get more comfortable in my new normal and accept it, and at least the mental battle I have been fighting will stop; a lot of wasted energy at this point, I've decided.

The best of luck to you and take good care. Most importantly, know you are NOT alone out there or in this battle by yourself.

Judy Johnson

[tisha1953 in reply to JudyJ]

Dear Judy, thank you for replying, i agree with all you have said. I still feel young for my years and i hate this decease with a vengeance, but as you say we must not let it beat us, I feel sorry for my Husband as he now has to care for me instead of the other way round. We want to do so much now i am not working but my stupid body stops me. It is early days for me so i am still in denial, i am not sure of things that can help me yet, i am attending an assessment center but they deal more with MS and stroke sufferers, some of it has been helpfull, like relaxation therapy and exercise. Thanks Judy, take care x

[jean2]

hi tisha

my husband is 65 now and was diagnosed with CBD 6 years ago although he was having symptoms before that. I have never written on this site before although I read it nearly every day and I have gleaned a lot of useful information from it for which I am very grateful. If you want to ask anything specific please feel free although I don't want to write anything to upset you as everyone progresses at a different rate and appears to suffer from different things at different stages

Jean Dykes

[tisha1953 in reply to jean2]

Thanks Jean, every site i have looked in focus on PSP mostly, they say symptoms start at 60 for both, thought i was on my own? Have had the symptoms mildly for years, the last 2 i have been getting gradually worse but not admitting it. I am used to caring for others all my working life, now i have to depend on others. Thought i could work till retiring age, how wrong was I !!!! never even heard of this decease untill i was told i may have it. Its the walking i hate and not being able to get my right hand going, it refuses to do what i want it to do, my right side is affected and my balance. Hopefully the other symptoms will stay at bay for a few years yet, i have a lot of living to do. Take care Jean, thanks for replying x

[LyndaP]

Hi Tisha, my husband also had to give up work at 59 due to CBD, he is now 60 and we believe the first symptoms appeared when he was about 55. I read this site daily but up till now have not contributed much however I also have found it very helpful

Best wishes

Lynda

[tisha1953 in reply to LyndaP]

Thanks Linda, i had to give up work last month as a care team manager in a care home, i have been off sick since an episode i had last August. I have gone from caring for others to be having to be cared for by my husband and i hate it but grateful too. I get so frustrated with it all, i think i am in denial. How does your husband cope? I have had the symptoms for a few years but only got bad this last year, i wouldn't believe the specialist when he told me, i thought it was a trapped nerve in my neck! I would like to hope that it will still turn out to be that, i don't like the prognosis ! Thanks for your reply, good luck to your hubby x

[LyndaP in reply to tisha1953]

Hi Trish, It also took quite a few years for my husband to be diagnosed, he initially had symptoms in 2007/2008 but we initially put those down to stress at work. He does find it hard as he was a very active, ex military, man who enjoyed sport, especially rugby and cricket. In fact the final straw before we saw a neurologist was at a cricket match when he was bowling and all of a sudden couldn't release the ball. He is coping extremely well, we decided at the beginning that we would talk about it and take each day at a time. It can be very frustrating for him (and me!) but we are still here. I won't go into detail as you have indicated that you don't want too much information yet. I would just say that i have found this website invaluable as a reference point, but if you do need any more information on how we have proceeded just let me know.

Take care

Lynda

[jimandsharynp]

To those with CBD I'm wondering if any of you have read the book "Finding Meaning with Charles". It's a personal story of a woman with husband diagnosed with CBD but later or after death she found out is was actually PSP all along. Great book because she tells all the things they tried to combat the disease, unfortunately with success. I don't recieve anything from the sales but have purchased the book and read it and found it VERY interesting. Lots of tips on coping with the disease.

Jimbo

[tisha1953]

Thanks Jimbo, will look out for it, but i think i am in denial at the moment, not sure how much info i want x

[SharonAB]

Hello Tisha, My husband John born in 1954 has PSP - had it for eight years now. In the 'earlier' years I was extremely lost & unable to find anyone in a similar predictament - went round and round in circles trying really hard to find someone to speak to. We have a nine year old daughter & I wondered who/what/where etc other people were handling things & how I could 'better' our situation. Fortunately through forums like this, books I've now read & recording I've listened to (used The AFTD.org & CUREPSP, PSP org for info) and bits of support I've picked up along the way I now have a grip on things (well most days - fingers crossed I'm not teary or over angry) and are able to provide support for our daughter. However, what really fell apart was my relationship with my husband. I did not fully appreciate how his coping strategies would be so different to mine. John wanted to deny what was happening to him for a while, I did not. In hind sight I should have given him the breathing space he needed. So what I'm getting at Tisha, give yourself the space you need. And, then when you're ready then call on as many resources as possible for you, your family and friends. Regards, Alana Western Australia.

[tisha1953 in reply to SharonAB]

Hi Alana, i must admit i am in denial, i have been fit and working looking after others all my life, i have a lot of goals to fulfill before my end. My stupid body is stopping me from doing a lot of them, there are still a few i may be able to do if i get the right support. I don't discuss it much with my husband, he supports me in everything, he seems to have come to terms with it more than me. We are planning a holiday in the sun later this year or early next year, i am hoping i will stay well enough to make it? Not sure about insurance? We were lucky enough to fulfill one of our ambitions 2 years ago, visiting my brother and his family in Scone, Australia, you live in a very beautiful country, you are so lucky, take care.

[marytea13 in reply to tisha1953]

Hi Alana Another from Western Australia like me (with PSP) & Strelley! Lets hope we can pool our resources & get a W A site going too.

[pamela2103]

Hi Tisha,

My mum has been diagnosed with advances CBD at the age of 49. She has been permanently placed in a care home, and her symptoms are very severe. It just shows it can affect people of all ages

[tisha1953 in reply to pamela2103]

Hi Pam, i am sorry to hear about your mum, it makes my problems sound pathetic, but different peoples symptoms are different, hopefully mine are slower in coming to a head. I do not want to live in a care home, i worked in one for 14 years, although it was a good care home, it isn't home. On the other hand i would not want to burden my husband or son's!!!