I’ve just joined this community, so hello to all. I’ve been diagnosed with corticobasal degeneration. I live at home with my husband who takes excellent care of me. I’m still walking in my home despite occasional falls and using a wheelchair outside of my home. My right hand and arm are, so far, the most severely affected. No meds except for a low dose of anti-anxiety medication.
Just hoping to connect with others who are dealing with the Parkinsonism diseases to share coping strategies.
You’ve come to the right place; everyone here has so much insight and hands on knowledge / experience. This is my go to when I have questions or concerns. I take care of my Mom, and she was diagnosed with CBD a couple of years ago, but the symptoms started a couple of years before diagnosis. We thought she had a stroke. Her writing started to change, and her gait when walking started to shuffle, and then she started having trouble finding her words. She is still walking with a rollater, but not for long distances. Her right hand has issues and her right leg ... no meds. Are you in the USA or UK? It seems like a lot of people in here are from the UK.
Hi, thanks for sharing your experience with your mom. I’ve had symptoms for about 4 years but didn’t seek help until 2 years had passed. I’m in the USA, how about you? All my best to you and your mom, I so appreciate all the caregivers!
I am in Ohio (Cleveland area) ... how about you??
I’m in the Miami, Florida area and we’ve lived here since 2000. But I lived in the Cleveland area during the mid-80’s, in Medina. My son and his family now live in your area, my son is a professor at a college there. I loved my time there, very friendly people plus the only time I lived somewhere dogwood bloomed!
I live near Medina, in Richfield/Bath Ohio ... small world! We are looking for a home in the Naples area ... so we will be moving as soon as we can sell our home (which is on the market) 
Ah, so you’ll be a Floridian soon! Good luck finding a home! I love not dealing with winter weather though I did miss the seasons for awhile.
Detroit!
HI, I'm newly diagnosed with CBD but it took two years before they knew what it was. Like many I thought that I had had a stroke and early on I was diagnosed with PPPD we thought that my left arm and leg were to do with something else happening. I still fall but I have such good care from my partner who's getting up in the night to walk me to the bathroom . He is taking the diagnosis quite hard as are all my family. I'm taking comfort from the fact that all cases are different and the life expectancy is an average.
Hello knitting and Welcome!
I came across your post/reply and want to encourage you to do a new post to introduce yourself ( maybe something with CBD in the title?) Tell us where you live if comfortable with that. More people see and respond to new posts than replies on older strings (though the older strings are a goldmine of information!!)
I offer this suggestion because it was made to me when I was new! 😄.
You will find a warm and supportive community to help you through, here.
❤️❤️❤️
Anne G.
Thank you I have now rewritten my message
Welcome! Dad had CBD and I was his caregiver. Dad started out with a few falls and his right arm/hand were affected first. It fact his ability to write was lost before a Dx of CBD. Ask any questions you have or search through old posts.
Ron
Thank you for responding, your Dad sounds much like me. Thanks for the tip, I wouldn’t have thought of that.
Hi, I’ll keep this short because I’m exhausted, but if I have anything to say it’s, “live in the now. Love what you have time for, ignore the rest. Dx’s change. No two people are alike. Don’t worry about tomorrow for today is precious”. I don’t even know if that makes sense, but you aren’t alone. Sending hugs.
Xoxo ❤️
Thank you for that, it does make a lot of sense. Sending hugs to you. ❤️
Hi my hubby has CBD, he has no right hand/ arm movement at all it slowly has taken away from him his ability to eat, drink,talk, breave write and a lot of his reading capabilities .and is now slowly taking his ability to walk. He used to work 14 hour days and was a fit healthy guy!!!
The last 6 months have changed him so much he had a fall broke his hip and it seemed to fasten up... We thought he had had a stroke when the speech difficulties began but after nearly 3 years we finally got a diagnosis he is in his 4th year now
He is young (47)
Everyone is different though so don’t think the worst stay brave and close to your loved ones, our lives have changed so much we have lost a lot but strangely have gained a lot too..
We are in Australia not many people here have heard of CBD it’s rare just like him
Sending you a big hug all the way from OZ
Thank you for your response, we also have gained a lot so I understand what you mean. Your husband is lucky to have you. Sending hugs to you both.❤️
Hi Birdlover!
First: If physicians agree that there is a Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while.
Recently (08-2018) and apparently with good results, Rock Steady Boxing exercises applied to PD patients are being tested to newly diagnosed PSP patients.
Rock Steady Boxing for Patients with Parkinson's: youtube.com/watch?v=XC1h4yg...
At this moment most of the types of PSP disease have not a scientifically proven pharmacological treatment which even slows progression but there are several experiences in progress in different hospitals that have not yet reached definitive conclusions.
Hug and courage.
Luis
Thank you for your response. I do exercise within my capabilities at this time and I agree, it does help tremendously.
Hi,
Like Luis shows in the video - exercise exercise - only thing that helps. Ruth has a cheap static bike she goes on everyday, a cheap cross-trainer that she can sit on (no balance) and Iyengar yoga couple of times a week using the bed for balance.
Richard x
Thanks for sharing your experience.
Hi my father has just had confirmation that he has corticobasal syndrome and a dementia that's consistent with it. It's taken a long time. He had to have a Dat scan and neurophyscological assessments and has been taking parkinson tablets for ages because they said they can help improve mobility by changing the dopamine levels in the brain. They worked for a time but now his balance and walking is worse. He props himself up with furniture won't use a frame goes mad at me if I ask him to. His right hand and arm seems to hang loose. Now we've been referred to hospice to manage his symptoms and wellbeing. We are in the UK. We all seem to have different levels of support with this journey. Sending hugs to everyone out there dealing with this x
Thank you for your response. I was prescribed the Parkinson’s medication at first also but it never helped at all! I hope hospice has some helpful suggestions for dealing with your Dad’s issues. I find it difficult to use a walker because of the issues with my arm so I understand your Dad’s resistance. I use padded shorts, like athletes wear when practicing, when I’m at home to help minimize injuries from falling.
Padded shorts is something l never thought of... Thank You Birdlover. You are brillant!
Sending hugs... Granni B
I’ve fallen several times since starting to wear them and I feel they have really helped minimize impact on my butt (I usually fall backwards). I bought the brand I really like (tortoise pads) on Amazon and I see they are out of stock in smaller adult sizes right now. I like this brand because they just pull up, no fastening together like other brands. Glad you like the idea!
I just looked on amazon... there are soooo many! What is your favorite brand?
The brand called “tortoise pads” is my favorite because they have a size that fits me well and they just pull up, no messing around with zippers or Velcro! I just did a search for that brand and you can buy them directly from the company also but their smaller adult sizes are back ordered until the end of the month. I hope you find something that works well.
Thank you so much... l will give it a try.
Welcome Birdlover
My husband had CBD. He has now passed, but he kept a degree of mobility, sight, appetite, ability to eat and communicate until he died (age 79). I wish you the best of luck and will attempt to help answer any questions you have!
Sew Bears nailed it though 😉
XX. Anne G.
Thanks for your response, your experience with your husband is very encouraging!
No one wants to be needing this forum but you will get more help, advice and understanding from the others who are alos on it so good luck and welcome. AliBee x
Thank you, it’s very helpful just to not feel alone in coping!
Welcome! I too have CBD. Cane inside . . Rolling Walker out. Coping for me has been difficult. It's the frustration of not being able to do simple tasks. I cry . . I get angry. . Take a lot of deep breaths. Having good friends helps a lot too. Keep active . . Best medicine. I'm here if you need me! 😍
I agree! I never realized how I much I enjoyed cleaning my house!! Are your hands and arms affected? Thank god, my left arm and hand are still functioning, I am amazed at how I’ve been able to learn to do things left-handed. It’s a lot of the things that take 2 hands that is so difficult and frustrating. I’ve had to rely on my husband for a lot of things.
..and so valuable to have an actual experiencer (patient) participate here! I think of you, Bargiepat, April Fool, Taihde, Val4521, mamapiggle, Sonia1970, cameoboy, efgs01, brenB, Brian219.... CBD patients all - and appreciate so much that you give your experience here to our group! XXX
Anne G.
Welcome to the site lots of knowledge, advice, love and support here for you. Do keep in touch and ask anything at all someone will have answers.
Wishing you well
Love Tippy
Thank you.
Why I’m moving to assisted living
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