We have been told they THINK my husband (he is 62) has CBD. We have been going to doctors for a year and had so many test run. He has cognitive issues, can not organize thoughts, plans, make decisions or do math. Became stressed all the time, mostly about work 2 years ago. Was paranoid that he was going to be fired. He is anxious every morning when he gets up. It takes him until noon most days to get moving. He has a tremor in the left leg and jerking/twitching movements in his sleep. Has not been able to work in months. He is tired all the time, apathetic, very little expression and just sits most of the day. The doctor has him on an antidepressant and anxiety med. They don't seem to help much, just put him to sleep. Now he has developed a cough, I told the doctor about it and they tell me the chest is clear.
Any ideas on what might cause the cough?
Does this sound like Corticobasal?
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AliciaB
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Coughing is very common with PSP, for what it's worth, as swallowing becomes compromised, and he may need to see a speech therapist for a swallow study to know. A constant dry cough can be related to heart issues. So sorry about your husband. This is a great community, but it's a wicked shame any of us belongs!
If you can get a Neurology team involved. They will give you day to day advice on how to manage things like behaviour, adaptions to your home and more.
In the early days it is a v e r y steep learning curve and it looks like an impossible task. It's not, but it takes being on the ball and using the support around you.
There will be much very good advice from folk hear who are further down the line with this. Its what got us through. There is a tremendous amount of experience here. With ++ common sense.
Don't be shy, get every agency and resource around you activated.
Wishing you the best and I am sorry you too are having to cope with this.
Thank you Kevin, I would love to get a team involved if I could find one. We are in Virginia and I can not find even 1 doctor that is familiar with CBD.
Welcome to the forum. I have found it a really supportive place to be even though I do not post often. It is so tough being a carer and here are people who really understand. My husband has CBD. He is 66 but started to get symptoms at about 58. He had a very high-powered job but started to be unable to organise his thoughts and plan things. This was probably the first symptom but later he had the symptoms you describe in his left arm and leg. He was eventually diagnosed with CBD at 62. He coughs frequently to clear the mucus in his throat.
He has taken anti depressants since 2012 which seem to help.
I am not sure if this is helpful to you but wish you all the best.
Yes, thank you! This is helpful, I have been thinking the cough is somehow related to the CBD. If he gets any mucus up it isn't discolored. I've been wondering if it has something to do with eating and drinking. Do you notice it more after he eats or drinks?
Yes definitely more after eating and drinking. He is just beginning to have trouble swallowing now and he is having a swallow study on Monday.
If you are in America you will not have access to the community neurological team but actually there are few neurologists here in UK who have direct experience of CBD as it is so rare. It took 3 years to diagnose my husband, although he had had vague symptoms for at least 5 years previously. I take a copy of the PSPA information sheet for healthcare professionals ( available on their website) with me to give to people like ambulance crew if he has a bad fall. I think you probably have the same kind of thing on your Cure PSP website in USA. I don't expect that people will know about it even though it is really frustrating that they don't.
It made me smile to hear your husband say he wanted his brain to work. Whenever I ask my husband what he wants i.e. a cup of tea or coffee he always says 'a new brain' !
Your husband might perhaps be in the early stages but the best advice is to carry on and do as much as you can as normal. We followed that advice(from Eastern Cedar and Heady I think) and my only regret is that we didn't do more while we could.
It is very stressful to be a carer though. Good luck and there is loads of support on this site. You are not alone.
What you have described is mirror image of my mother in law. She started with the anxiety and tickle in her throat. Thye even went so far as to operate her thyroid but found nothing. Is the cough a dry cough????
I think with CBD as opposed to PSP the anxiety hits much harder. The twitching in his sleep is acting out iin his sleep could lead to acting out in his dreams, keep an eye on that, my mother in law fell out of bed and broke her ankle.
Left side jerking and twitching, same thing with us, after all this time she can no longer use her left side.
As easterncedar said the cough could be heart issues, but with my mother in law that was the first sign, 7 years ago.
Can your husband talk for long periods of time without feeling something is in his throat? Is he unsteady on his feet?
We also tried many antidepressants ans anti anxiety pills to no avail. The only thing that is helping her is Trazadone 150mg at night so she can sleep. That has slightly helped with her anxiety. The depression has faded away.
Start now, get all the advise and help you can so your not wearing yourself and your husband out when you actually need it. We have our mother in law in a home, she is 79 and after a year with 24 carers at home, it was becoming too dangerous to keep her there. We could not make the necessary changes to her condo in order to make it safe. So Although I am not hte promary carer for her, I am very involved in her care. Kudos to you all taking care of your loved ones on yor own.....
As everyone else has said, welcome to our group, I only joined in November when I was searching for personal stories about people with CBD. This is the only place where you will get real advise. The doctors dont know the daily struggle. They only know some of the facts.
Thank you, it is a dry cough, his heart is okay. The anxiety was through the roof at first, nothing seemed to help. Now it is better but not gone and it always seems to be worse in the mornings.
He doesn't talk nearly as much as he use to. I will pay attention to when he is talking and see if that is when he is coughing and ask him about his throat. I thought it might have something to do with eating and drinking.
He hasn't had much problem with balance so far. He did fall a few weeks ago but said it was because the ground wasn't level. He stays in the house most of the time.
He takes an antidepressant in the evening and that helped with sleep. The anti-anxiety med he only takes as needed. He doesn't like to take it because it puts him to sleep.
The worst thing about this is he knows something is wrong with him and he keeps telling me he is so sorry. He says he just wants his brain to work. He tells me that sometimes he dreams that he is normal and he doesn't want to wake up.
It's hard to not have friends and family that understand what I'm living with. When they see him they tell me he looks normal and seems okay.
I know the feeling, people would visit my mother I. Law and say she looked drunk and unbalanced. She never drank but did take anxiety meds we blamed them.
seems like he is still in the initial stages, enjoy everyday and do things you have always wanted to do now.
Thank you everyone! It is a dry cough. It started back in June, I took him in and he had an EKG. He was tested to make sure it wasn't his heart. He did have a heart attack in 2011 & had to have a stint.
I thought this came on suddenly last Jan. However when I look back it may have started 3 years ago. There were subtle changes in his personality that I really didn't pay to much attention to at the time. Things like stressing more about work and new management. He would complain about what seemed to me as being little things that he had always just taken in stride. He started going everywhere with me, planning my days off. He would get annoyed if I needed to go grocery shopping or run other errands. He wanted to go bike riding, to the pool, park, run, walks, anything instead. I got to where I would just go along and run the house hold errands after I got off of work before he got home. He was always a type A personality, everything had a place and had to be in it's place. He started slowly becoming a disorganized. I noticed thing out of place and again didn't think to much of it. He was always social and a great public speaker. Somewhere along the way he started withdrawing. I would notice he had disappeared during family get togethers. When I would ask why he would tell me that he didn't have anything to say and no one was interested in what he had to say.
Sorry to go on and on... This has been very difficult. Dec. 18th the doctor (Eastern Virginia Medical) that finally said possible CDB is a Geriatric Memory Specialist. He came up with that based on the MRI from 2011 and the MRI from April and he also had an MRI Hippocampus Study done in Dec., a Neuro Psych test (3 hours long) and physical exam. All blood work has been normal and the EEG was normal. No memory issues except for visual recognition. Doesn't need to see him again until Dec. 2017 for another MRI. Primary care doctor has never seen a case of CBD.
I can not seem to find a doctor in Virginia that is familiar with CBD. Any suggestions on Doctors?
Thanks for all the help and sharing your stories. It's good to know we are not alone.
How far are you from the University of Virginia? University Medical Centers often have experts in rare diseases. Best of luck to you. It sounds like your husband has truly suffered these past few years.
I'm not a doctor but it does sound like a neurological disorder. Push to get a referral to a neurologist who will order an MRI. It took two MRIs and almost a year to get our diagnosis. Good luck and hang in there. I know it's not easy.
My dads symptoms first started 6 years ago...My dad was only recently diagnosed with CBD but not a single neurologist in our hospital had ever actually dealt with a case of it. Just heard about it.
it was a Locum doctor from another country that suspected what it might be after years of unanswered questions and frustration.
My dads coughing has started the past 5 months...now it has progressed. it is all the time, during the night it is horrendous and his moaning and breathing.
we turn him on his side (not the side of his alien limb,arm) this does help a little bit we never sleep properly because its constant worry. His heart was tested and that was fine so guessing it os down to the CBD.
Except for the cough, all the other symptoms sound like the symptoms that my husband started off with. IT took 3 years for a diagnosis of CBD which was in 2013 but since onset of symptoms he is now in his 7th year!
How was he the first few years? We rarely go anywhere, he doesn't want anyone to see him. He worries about what people will think of him. He never liked watching TV and now that is all he does from 6pm until bed time.
Hi Alicia, new to this site, but in reading the posts it makes me want to cry! So many going through what I am going through. Your posts really resonated with me as we seem to have alot in common. My husband had a very stressful complicated job that he did so well, but at age 58 things just changed. I noticed him not able to do the things that he had always done. And he seemed more anxious, and being so smart, it was strange to hear him say "Sometimes I think I'm getting stupider!" He seemed to know his brain wasnt working as it usually had. He was always a fun, funny outgoing guy, and now he stresses over even very small things, and has had some subtle personality changes. Sometimes I look at him, and say to myself, "where did Dan go?" He is so different than he used to be. He had to medically retire, and I miss the old Dan so much! His left arm bothers him immensely, it is flexed in an unnatural pose all the time. He watches TV a lot and he never used to. He seems increasingly dependent on me for companionship and just little things. He is still being diagnosed, but it is likely CBD, as all the symptoms fit and the last neurologist says he is pretty sure of it. Sometimes I wonder what the future is going to hold for us and for me. I feel very alone in this journey, but this site and others like it are a great comfort.
I am so sorry! This is an awful disease! My husband has taken a turn for the worse over the past week or so. Not watching tv, pacing all the time and not talking. I ask him today if he was having trouble finding word and with the usual pause he said yes. The doctors have checked for a uti and anything else that could possible cause the changes. They believe it is a down turn. Now to find someone to stay with him so I can keep working & paying for our health care.
thank you for your reply to my post. May I ask how many years in to the diagnosis that you are? Dan's symptoms started about 3 years ago. Knowing the prognosis, I would say we are still in the earlier phase and I am thankful for that. Sometimes I try to pretend things are normal. We live near a senior living home, and I was surprised by how many resources they have locally, to find care for your loved one when the need arises. Maybe you can find one locally in your area and ask about a caregiver. I am also working just for the health insurance.
Things started 2 years ago when he told me he didn't feel like himself he said he felt down & didn't know why. Within a week of so the tremors started & the severe anxiety. We didn't get an official diagnoses until Dec. 2016. He has also since been dx with bvFTD. Looking back the symptoms go back as far as spring of 2013.
I just got word from our GP that he shouldn't be left alone anymore so I have to find someone to care for him.
I am so sorry that your husband is needing all of this care, but you will get through this, and I know there comes a point when you cant do it all, at least not safely. I know through all of this your husband feels your love and care. Let me know how things progress as I am right behind you on this terrible road. Lisa
In the beginning, I wasn't allowed to tell anyone that he was ill, not even our children, our friends and family.Of course they all realised there was something wrong with him.He would be angry when we went to see any of his doctors or consultants and I told them how he had been. He thought I was telling lies about him.
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