Hi I was diagnosed with CBD last year but reading the messages here everyone seems to initially have problems with their left arm. Am I the only one whose right arm and now my right leg is effected. There is so little known about this condition that I don’t know what is to do with this, something else, or just old age! It is so easy to blame CBD for feeling unwell or anxious 🤪. Although I have a Neuro Nurse visiting me who does what she can, but she is as much in the dark as I am, as she has no other patients with CBD. I live in South Norfolk, England and would like to be in touch with anyone locally that has this awful condition. Thanks for any help you can give.
Yve
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Dad, CBD, was first affected in the right arm. In fact it was his hand writing deterioration that prompted me getting PoA for him. Eventually his right arm became locked in place crossed over his chest.
I’m waving to you from the US. We still aren’t satisfied with hubby’s diagnosis but he did have a lot of trouble swinging his right arm and his right leg dragged/shuffled. His hand writing also suffered to where he can no longer sign his name. He’s been on Levodopa for 3 months now and his mobility and stiffness has improved dramatically. It’s like night and day.
You’re right though, not everyone is the same. From other posts it looks like some people experience rigidity on their left side while others are affected on their right.
I’m sorry that you had to join this forum for CBD but I’m glad that you found it. Welcome! You’ll find a lot of support here.
Interesting SewBears - as I HATE the term Old Bag. Its considered offensive here in the UK but people get away with it when used in a joking manner.....ugh!
Hi LoveWinter, I’m sorry you were offended. My parents celebrated their 60th wedding anniversary shortly before my mom passed away in 2009. I lost my dad in 2013. My folks would constantly tease each other in a very loving way about each of them being the other person’s “old bag”. Here in the US it’s not an insult. At least not from where I’m from. Anyway, the term gives me very fond memories of my parents goofing off with each other and I miss them so much.
I am so sorry SewBears for my unthinking comments about 'old bag' especially on a site like this where there is no criticism only heartfelt advice and encouragement in the midst of all our difficulties. Again, I'm an idiot. Apologies everyone.
We all have trying times and are sensitive about certain words or subjects. Please don’t beat yourself up.
Idiot reminds me of something funny too. My children were caught passing a note ‘with force’ between each other. This is when they were little, just beginning to read and write. The note said “You’re an IDGIOT!” They would shout “no you are!” and pass the note back and forth, each time shouting “no you are!”. This would last for hours until I intervened. My head goes here when I hear the word idiot.
I have a warped sense of humor. It’s what gets me through the day. Thank you for understanding.
I live just outside Norwich. Diagnosed with CBD 2 years ago at age 59. It did start with the left hand side. Have you seen a consultant at the N&N? If so who? I have seen three now and the one I last saw worked on research at Cambridge which I am now helping with.
There is also a support group that meets every 6 weeks or so. There is also lots of info here and on thePSP association web site. There is no cure but I am on Madopar which has helped with movement. CBD is very hard to diagnose as it has very similar traits to other neurological diseases. Also very rare in comparison to the likes of Parkinsons . Sorry for asking, but how old are you? Hope any of this helps,feel free to ask anything further. Jayne
Thank you Jayne for your reply. I am 74 and no I don’t mind you asking. I first saw Dr. Woodward but now I see Dr. Dostal, at the N & N. Though there is not much they can do other than monitor me. Fortunately I don’t have a great deal of the symptoms yet other than loss of use of my right arm and hand, shuffling when I walk due to a weakness in my right leg and loss of balance. We don’t mention the times I have used the wrong word in a sentence. I know what I am trying to say but I just lose the word. Can’t count the number of times I have had to apologise! I spoke to my GP about the Madopar you are on and he is going to look into it to see if it would help me. I will let you know how I get on.
Hi Yve, just seen your reply. I was under Dr Dostal but recently saw the new consultant Dr Coyle Gilchrist. He was involved in the CBD research at Addenbrooks and as I’ m on several research projects there it makes sense to be with him. Do you get any internal trembling? I do most of the time,and feel as though my legs aren’t strong enough to hold me up. Please keep in touch. If you want to come to a group meeting, let me know. Jayne
Hi..my mum has cbd diagnosed 2 years ago..its also her right hand..but her speech is all gobbledy gooch now..her legs are fine..no problem walking thank god...but her left hand has no strength in it at all..so everything is done for her....she is tired and fatigued though all day long.. her right hand has the uncontrollable shakes..she takes sinemet 4 times a day and it does help..
Hi, I also have been diagnosed with CBD and my right arm is the one that is affected. My left arm is still fine (thank God) but my right arm was the first area where I had symptoms and continues to be the area I have the most difficulty with.
Anxiety is also something I’ve experienced and I’m now taking a small dose of Sertraline (Zoloft) and that has helped tremendously.
I completely agree with you that it is hard to sort out the cause of different things we may be experiencing! I have issues with my spine also and recently my husband convinced me to go to a chiropractor and it really did help with my walking and balance.
With my husband, possible CBD, it's just the right arm as well. We just saw several old friends and this is the first time people noticed his issues with stiffness, holding it at a weird angle, difficulty with silverware. And a new tremor.
I read somewhere there's a chance it affects maybe the dominant side more but I can't find that source at the moment.
Yve, there's wonderful people here to wall through this with you.
Hi I was diagnosed with CPD 5 years ago aged 68 and I had an 'alien hand' looking like a claw. I was unable to write or touch my thumb and finger tips. My physio suggested a hand brace (used for hand problems) and made me a half a plaster cast t wear at night. After wearing this for 2 years and intensive hand exercises my hand straightened out and I can now right although have little grip. I was recommended Tai Chi for balance which I do twice a week plus gym work. I would suggest your GP gets your mother to see the Parkinsons nurse at the Hospital. I find this a great help. Also contact the PSP Association on their web site. They are fully aware of CPD and are great. I live in Somerset and you are not the only one in the dark.
I am now on 8 Sinemet a day plus other drugs.
Fight it, find out all you can about CPD and don't give in to it.
Hi...my mum also has an alien hand with a claw..but we cannot touch it as she yells in pain..even if u tip off the fingers...waiting also on a splint from the ot...is your hand painful also
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