My husband who was diagnosed in Sept 2016, but had some of the symptoms in 2012. I read the posts, but have only replied a couple of times when I felt my comment would be useful.
He suffers with fatigue which is overwhelming. He can sleep all night and most of the day. He has no energy at all. This has been on going for a while. The GP has checked to see if anything else is going on, but has not found anything. Other Health professionals have witnessed the extreme fatigue and not able to confirm if it is the PSP
We have a meeting with the Neurologist in a couple of weeks and will raise it with him again. Last time he told him he should do things instead of saying in bed. Unfortunately he cannot as he has not energy.
I wondered if anyone has similar experience. It would be interesting to know. I would be very grateful of any comments or information as it may be useful when we see the Neurologist.
Kind regards
Brenda
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Bobaroony
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Interestingly my husband is about 6 - 12 mos behind yours (2013 symptoms/2016 dx refined from PSP to CBD in 2017) and he is 85% of the way to your husband's description in respect to fatigue. He has apathy, impaired mobility, severely impaired speech and increasing fatigue. He is in bed about 12 hours at night and dozes frequently through the morning and afternoon. (In the evening he watches tv programs and seems to stay awake.) He can just get himself up from a sitting position and his walk is a very slow shuffle. He is doing less and less: he doesn't or can't read; he can't text or look at a computer; he can't focus on audiobooks; he did about 1-2 tasks around the house (emptying dishwasher) but has now given those up.
I've never searched for a reason for this other than the CBD. He is otherwise healthy and all these impairments, lacks etc have come along progressively since the first symptom.
Thank you for your reply, sorry to hear you too are witnessing the same problems.
Bob also is apathetic, he is taking escitalopram 20mg but does not have an affect, but he may be worse if he did not take them. His mobility is impaired uses a stroller in the house with me assisting and a wheelchair when we go out. Speech is slurred and very quiet.
He needs help get into and out of a chair and bed. He does not do anything now. He can't read due to the eyes being fixed although he has a prism lens which helps converge his eyes, but become very tired. He does listen to audio books but only for a short while. His diagnosis is PSP but interesting you mention your husband also has CBD. Bob falls backwards on a regular basis and we have an inflatable Mangar Lift so I can get him up from the floor. He is also urine incontinent. He struggles with some food and drinks so have thickeners and on a soft diet. Unfortunately he is not able to co-ordinate cutlery very well so I always have to help him.
As many have commented on this site it is an awful disease which affects the whole family. Bob is involved with a Study which measures all the aspects of the disease every 3 months. Sadly this shows the progression very clearly. The study is hoping to have findings that may help a drug company to produce something to help in the future.
We take each day as it comes and manage the changes which is probably the same for you.
Yes, pretty much exactly the same. Though G can swallow ok, he's starting to cough as lot more. Also can't use a knife but can manage a spoon. Has to be guided onto chairs, into bed etc. They sound pretty close, with your hubby a little ahead. I'm going to follow you Brenda (though I know you said you don't post often
Great that he's in a study: that should give me a sense of purpose and meaning. Good work!
CBD is corticobasal degeneration: a disease very like PSP and often misdiagnosed as Parkinson's or PSP. This site serves patients and caregivers of both PSP and CBD.
Well, thanks Staff, but my husband WON'T get better, as there is no cure for CBD as there isn't for PSP. I hope you are not hearing this for the first time.! But although there is no cure Today, there is every reason to hope for a cure some day, flowing from all the research that is being done on neurodegenerative diseases.
It could be worse - I'm grateful for every pretty good day.
My husband is having a tuff time with the TV remote now😕The phone, laptop, his crossword puzzles have all faded to the sides. But, he can still manage to get upstairs to bed. I don't think he wants to sleep in the living room😐
So hard to see the decline...Give him an extra hug for me
Anne G.
I had read elsewhere and on here that the healthy cells in the brain are working overtime to take up the slack of the ones that have died. That causes the fatigue. The brain is exhusted.
Thank you for your comment. I had also heard this explanation. It is interesting that the fatigue does not seem to affect many sufferers hence my post to try and see if there were others. It appears that the brain certainly becomes exhausted very quickly with this disease.
Thank you for your response. It is sad to see someone who was very active and energetic suffer so much with the fatigue. It is very frustrating for the PSP patients too.
Agreeing with the others posters PSP and CBD bring with them fatigue.
However it's important to check than another condition isn't causing it as well.
Fatigue hasn't yet, as far as I know, been researched in detail for PSP and CBD. However if you look at the research on Parkinson's for both fatigue and weight loss (and their close relationship) a possible explanation of both might be found.
In the end both fatigue and weight loss appear to be the way PSP and CBD go.
Brenda, not only do we have the same name , the problems you described about your husband are almost identical to mine (Ivor) , Ivor was diagnosed oct 2016. I think while he is sleeping I know where he is. And not coming to any harm. I sign my answers to any post ...Brenda xxx ... that way we wont get confused with each other. if do we start getting mixed up we will need to come to compromise, , if you need to send me a private message. ...Brenda xxx
My husband is very early in possible CBD, but the fatigue is the worst symptom by far--it's like he's not the same person. (He has a hand that won't do some things as well.) . He doesn't think he's as different as he is. I'm frustrated by his fatigue, and then feel bad, since he can't help it--but it's easy to forget that when all else seems so normal.
Thank you for your reply the fatigue is frustrating for both of us too, so I know how you feel. Interesting that you mention possible CBD. We shall be asking the Neurologist when we see him if Bob has it as he feels he has no strength in his right arm.
My husband's first symptom that raised alarm was that his right hand just stopped functioning correctly one day at work. Within a week, he'd had CT scans and an MRI, and a neurologist proposed CBD, which was a shock. Looking backwards, there were things that related (running motions in his sleep, RBD) and loss of sense of smell.
My husband's right hand continues to be weird, he can do some motions and others not at all. His neuro pulled him off bicycling, because most of the diagnosis was based on that hand, and if he broke it, it would make it impossible to see if things were better or worse.
My wife (now 74) is diagnosed with PSP-RS in 2015. The first symptoms in 2012.
Today she needs help get in and out of a chair and bed. She can not read but she can communicate through a panel with a large alphabet. We were not lucky with the audio books. Whenever she is walking helped by two people. I have struggles with some food and drinks so have thickeners and on a mediterranean diet. She is not able to co-ordinate cutlery very well and gets tired, usually we have to help her finish the meal.
However, 6 days a week, aided by a trained person and during 2 to 3 hours she develops a very complete table of exercises to move most of her muscles.
By private internal mail I send our experiences with PSP if they were useful.
Thank you for your reply, it sounds as though you are both going through the same issues as we are. I hope it the exercises work for your wife. Bob does not have much energy or concentration, we follow a regime for exercise but he soon tires.
Without any scientific basis, only through observation of a few neurological diseases like PSP, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected. In the HealthUnlocked chat I have found many references that support this observation.
In my opinion and experience, if physicians agree that there is suspicion of 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. (Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they require more frequent rest periods.)
I am fairly new to this site and I admire how everyone supports each other with information and truly caring. Mom had PSP and it was such a puzzle. I started falling backwards a year and a half ago. So in my heart I believe PSP has hit our family once more. I am only now ready to admit my thoughts to the doctor. I will call for an appointment today. Please keep me in your prayers. Several years ago I nick named my right hand Crazy Hand (she threw a hot cup of coffee from the dining room into the living room), Recently I have started calling my left hand Lefty Lucy (she drops items occasionally). My falls are so frequent that I told my husband I am ready to turn my cane in for a wheel chair for safety sake. It is nice to able to share on this site. Thanks for being here. Bliss and Blessings, Becky
Hi Becky, So sorry you are dealing with this--especially after going through it with your mother. You might ask your doctor about CBD particularly (Corticobasal), because "alien hand syndrome" is one of the markers for it, where the hand literally does actions the person doesn't intend.
Hi Brenda, a bit late coming back with my thoughts, but hope this helps. We realise now that fatigue was one of my husband's very early symptoms of PSP and long before any other worrying symptoms materialised. I remember two trips that we took, one a guided tour of the west coast of the USA and the other in Canada, to include a trip on the Rocky Mountaineer. During those trips he slept almost continuously whilst we were on the road, and on the train, missing so much of the amazing sights. I got so cross with him and said no point in any more trips as he obviously wasn't interested. Little did we know then what we know now. He did visit the GP on many occasions and blood tests showed nothing untoward. We are now 7 years in, 4 years misdiagnosed as nothing wrong, 3 years 4 months post diagnosis, but in reality probably 10 plus years if we count the fatigue as an early symptom. He sleeps 10-12 hours through the night and dozes off in the chair immediately following breakfast. He would sleep all day if I didn't take him out. The PSP Association handbook does refer to fatigue. We keep reading about various drug trials, which to qualify for inclusion you need to be In the early stages of the disease, well how will they catch people early when, as in my husband's case, these very early symptoms are missed, or indeed dismissed as nothing? Following diagnosis a friend suggested I give my husband vitamin B12 for the fatigue. I mentioned it to our neurologist who said OK to give it to him but I would be wasting my money. Well, whether it was fluke or the placebo effect we will never know but he perked up on it for almost a year before going back to square 1, and here we are at 9.30 pm with him asleep in the chair waiting for me to wake him to put him to bed!! Sadly, my husband has been really hit with the cognitive side of things so even when he is awake he barely functions. All very challenging but we all seem to go on to get through another day. Best wishes. HIlsandR
What you have described is exactly the same I have witnessed with mu husband.
We went on trips and sometimes he would sleep through the tours or stay in our room as he lacked the energy. He is a diabetic and we put some it t down to that. As part of his diabetic medicine regime he has B12 injections every 3 months. At first we thought it helped but we think it may have been wishful thinking. He still has to have them, not pleasant injections can be painful. my husband barely functions have to help with everything now. We also take one day at a time. It is an awful disease.
Dear LostinHeadSpace - Thank you for the information - I have read about alien hand syndrome and I will ask the doctor about CBD particularly (Corticobasal). I looked into it a little on my own but it is all too much for my brain. My list of questions for him gets longer every time I visit this site. Bliss and Blessing, Becky
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