Hi my husband has CBD and I'm not sure I'm on the right chat group. I know they are close illnesses. He was diagnosed in 2015 but I think he had it before that. I noticed changes in him but didn't know what was wrong. He is being managed by many medications and is doing pretty well at this point. He does nap a lot during the day and sleeps very well at night. I'm not sure if it is the meds or his illness that makes him sleep so much or just boredom. He has good days getting around and uses a cane. If he has longer walking he will use his walker. My husband is 70 years old now. He has been having trouble shaving and combing his hair raising his arms up seems to be difficult for him. Is this something that is due to his illness? What should I expect next? I know everyone is different but would like some answers.
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Michigan341
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Dear Michigan341. Welcome to the site no one really wants to be on, but it will help you so much and will mean that you have a great big, international family who will support you and give you advice and answer questions when you need help, and will understand without you having to explain. My husband was diagnosed with CBD in January 2016 but had been having odd, unexplained symptoms for several years before that. He is now 74. The best way to find out what you want to know about CBD is to go onto the PSPA webiste. They have just produced a brilliant information leaflet for professionals on CBD which can be downloaded. Everybody suffering from this condition varies in their progression and how it presents but your husband's inability to use his arm properly certainly sounds as if it is related to his condition. Nigel's mobility is very poor nowadays and he has swallowing and cognitive problems too, and like your husband he sleeps a lot. Nigel cannot write or do puzzles anymore or his photography so he may well be bored but I guess when one's brain is not functioning properly it must make everything you do quite an effort and therefore very tiring. Anyway hope this helps a bit. Good luck and big hug AliBee xx
Thank you so much for the hug and your reply AliBee. I am so thankful I found this group. It makes me sad to know others are going through this horrible disorder. I no longer can read my husbands hand writing and we also bought a child’s puzzle to help keep his mind alert. Even bought Simon Says game. That proved to be a little difficult for him. The very first thing I noticed about my husband was the twinkle in his eyes was gone. When he napped in his chair he would look like he was having a seizure and his face would make all kinds of distortions. He would drool his one hand would shake. It seemed to take forever to get answers and finally a neurologist gave us a diagnosis of CBD. He was told no more driving, hunting or working. It sure was a lot to take in. From what I’ve read they don’t know what causes this disorder. My husband has had two head traumas that I’m aware of and it just makes me wonder if there is a connection and if anyone else’s loved one had any knocks on their head. My husband is doing quite well with the medications he’s on. In fact the last time the neurologist had seen him she was amazed at how well he’s doing. I know we have a long tough road ahead and I’m trying to make the best of every day. I just would like to know just what’s next to help prepare myself. I’m sure that might be pretty impossible knowing everyone is different and depending on what starts to shrink where in his head. I pray this illness doesn’t make him mean. That would be so difficult to go through. Again thank you for taking the time to respond.
Sorry to hear about your husband's diagnosis. My husband also has probable CBD, and I wanted to say, he had one huge head trauma as a teenager--falling out of a tree, which left him out cold til the next day.
Welcome. This is the correct site for CBD and PSP. They seem to be similar. Symptoms can overlap with neurological diseases. Your husband will probably have a slow decline over the next few years. Your caregiving will increase as his abilities decline. Ask any question about anything.
Hi welcome to the site. My dad had a diagnosis of cbd and form of dementia that's consistent with it this year. Like you I've noticed dad is suddenly sleeping alot more. He's 84. He's on parkinson tablets levadopa I think they are called. I'd wondered if it was partly his meds. Now they are considering donepizil as well. This site is so supportive it will really help you. All the best. You are not alone x
Welcome to this very special site, where we can all share the same experiences, I have gained so much help and advice as my hubby with psp has progressed, as a carer you need it especially on a bad day you can have a good old rant and rave, and you will get loads of replies to realise your not alone, as you notice these two illnesses leave a mark on us carers, even to the extent when our beloved have passed on, you still can't let it go many on this site are still helping after years of loss.
I am from Bristol in England, can I guess your from UsA, our medical help do vary across the world.
I am sorry to welcome you, but you are at the correct place and am glad that you found this forum. You will find a wealth of information here as well as emotional support for you as a caregiver. The search functions is very useful, since we similar questions as we manage life with a loved one with either of these diseases.
My wife passed away last summer from CBD. She was only 59 at the time. She too had difficulty raising her arms. Initially she lost the ability to use the left arm and then finally toward the end the right. She was very athletic until the cruel disease slowly took away those abilities. The worst was the slow loss of her speech. Initially she became quieter, until she could essentially not speak, which was her favorite thing to do. She also slept well, but mainly at night. This is not always the case as I have found on this forum. This is a blessing.
So from our doctors and what I found is that exercise is important: physical, verbal, and mental. From a caregiver standpoint, you need to take care of yourself. You need a support structure. My wife’s friends were invaluable having coffees with her and helping me so that I could run errands. Her needs just continued to increase as the disease progress, such that I retired to care for her full time.
Finally, cherish each moment you have with your husband. Even during the difficult times. I realize this is easier said than done, but I wish we could have crammed for life in our 35.5 years of marriage.
Prayers of strength and wisdom as you navigate this phase of your lives,
My husband has CBD as well. He’s 61. Everything you’ve described sounds just like him. He also has a difficult time raising his arms. Trying to help him wash his arm pits while he’s showering is becoming more difficult. I don’t want to hurt him by forcing his arms up—but I want him clean too. And just eating a meal will wear him out to the point that his head is bobbing and he’s falling asleep before he’s finished. The only thing to keep his attention is a good movie on Netflix, but I’ll catch him napping then too.
You’re not alone, Michigan341. We’re out here too, taking one day at a time.
You're not alone in Michigan, either! Detroit area, here. There are a several of Michiganders around My huz is also 70 and a little further along with his PSP.
Welcome to the site. Dad had CBD, just an observational Dx by Neuro Movement Specialist in Jan 2016. He had symptoms 3-4 years prior to that. He wasn't on many medications at one time and eventually taken off just about everything. He did fall asleep a lot but never slept for long periods of time. You'll find yourself reacting to whatever symptom(s) arise, some you can kind of plan for. Cane and walker are goods things to have in advance, almost everyone experiences walking issues. You'll want access to a low/no step in shower, eventually it will become to much to step into a tub.
Ask any questions you have, someone will reply. There are years of collective caregiving experience on the site.
I, too, have been diagnosed with CBD recently. Had weird symptoms for 1 1/2 years. 10/2017 I took a terrible fall in my kitchen . . Broke bones in my face, shattered my nose and broke my upper jaw in 3 places. After 51/2 hours of surgery and many plates and screws, I still have no feeling upper lip. Neurophysiologist feels that was the first symptom of CBD. I walk with a rollator as balance very bad. Painful hands, wrists and forearms. Can't write, vision blurry, short term memory gone. Can't help you with what to expect as everyday is a surprise for me. So glad you joined this group and welcome.
Hello and welcome to the site. My husband had CBD and his experience was a lot like yours. He had difficulty raising his arms which started with stiffness and uncoordination on his left side. Eventually during times of stress his arms would move on their own.
He had cognitive loss, which showed up in his speech loss, writing loss and loss of numeracy. He also could not handle multiple inputs at the same time i.e. the tv on, people speaking and having to answer a question or think of something all at the same time. He also slept a lot and his neurologist said this was necessary, as his brain was exhausted from working hard to keep it all together.
Despite this difficulty, he was able to eat well had some mobility i.e. I could get him in and out of the car and we were able to do some limited things together that brought him enjoyment right until his last day.
I wish you the very best of luck. We are here whenever you need to rant, ask questions or just hang out.
my sister, 75 years old with PSP is now getting worse. she has difficulty in speaking - we don't understand what she is saying, which of course makes her frustrated. she is very lonely, with only two helpers attending her. her two children live far away from her. I took her to the neurologist 2 months ago - he said we should be prepared - because she is just in bed most of the time she might have kidney failure and pneumonia. we dont know how long she will survive coz her heart and internal organs are still functioning well
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