Hubby was on Wellbutrin for years and rather than trying something new his doctor just kept increasing the antidepressant dosage. After CBD diagnosis we weaned hubby off of Wellbutrin and tried Effexor. His depression didn’t improve. Interesting though, when antidepressants were completely out of his system, his cognitive/confusion symptoms improved immensely.
We are experimenting now with carbidopa-levodopa, to help with stiffness. This is an experiment because hubby’s DAT scan does not reveal Parkinson’s. We think he has Parkinsonism traits, but not Parkinson’s (CONFUSING!). The doctor thinks that if we can manage the stiffness that there will be less pain. Less pain equals better mood. Today marks one month on Dopamine, 2 months before we see the doctor again. Hubby is also on a low dose of Clonazepam for spasms and agitation and to help him sleep better at night. All of this to say that the Dopamine has helped with stiffness. Hubby is bending at the waist better and his gait has improved. His mood appears to be better. The problem is that his cognitive/confusion is back with a vengeance. Just like before when he was on antidepressants. I don’t know if this is a dopamine side effect or if it’s the disease. Does anyone have any thoughts, comments or suggestions?
Thanks for your continued support from I SewBears
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Parkinsonism traits just means that the symptoms mimic Parkinsons but the disease is proved not to be Parkinsons. You read regularly on here that people have been diagnosed with Parkinson's only to then go on several years later to be told they have PSP or similar. Interestingly, my husband was trialled on Levadopa to rule out Parkinsons as the drug does work very well with people with true Parkinsons. For R the drug worked for just a week when he went from being stooped to having the agility of a 30 year old going up the stairs - maybe that was the placebo effect. Even after the dose was upped he went back to stooping so Parkinsons was ruled out.
Sadly for us, cognition/confusion etc were with R from early on in the illness. Some weeks I would see marked improvements only for the next week to go downhill again. I described it to the neurologist as like a flickering flame suddenly bursting into life only to fade again, and of course eventually things just remained consistent, just downs no ups, but always a glimmer of the wonderful man that I once knew still being in there somewhere. We were told there wasn't really any drug that would have any marked effect on these symptoms and caution was advised whether trying different things was the right way to go as one symptom might improve but another could be made worse, so R jogged along on a fairly low dose of Sertraline only, though I am not sure that had any measureable effect. As if we don't have enough to worry about it becomes a minefield when we are trying to work out whether it's drugs causing a problem or disease progression and from my experience I don't think the experts really had the answers.
R was finally put on a very low dose antipsychotic for his challenging agitation. From being semi mobile, even getting upstairs, still able to eat and drink solid food, he was reduced to a zombie, couldn't weight bear, didn't eat, no communication whatsoever, within a month he was gone. The medical people said disease progression, I will always have a question mark against that.
Are you able to get a phone consultation with your neurologist rather than wait 2 months, just to talk over your concerns? This site is invaluable for support and sharing experiences, especially around practical advice, but often impossible to give the answers especially around medication as everyone's journey/reaction to meds is different. I can only wish today is a good one for you both. HIls and R.x
I’m going to remember “flickering flame”. A spot on translation of what’s happening now.
I have reached out to hubby’s doctor to review his medications and his ongoing symptoms. I imagine that I’ll have a response within the next day or two.
I think that I might be able to get a little more sleep now. The sun will rise in about 3 hours and it’s going to be a great day!
There is nothing I can really add to HilsandR's post excepting that there are some ?8 different types of PSP now identified (Counting CBD as one). One of them is PSP - P. The last 'P' stands for Parkinsonian'.
The easiest way of diagnosing this type is first by observing some Parkinsonian type symptoms and then those symptoms diminishing with Levadopa or similar drugs.
PSP Richards type (Common PSP) and CBD do not respond to these drugs.
"There is no specific treatment that slows down the progression of corticobasal degeneration. Treatment is directed toward the specific symptoms that are apparent in each individual, although most cases prove resistant to such therapy.
Affected individuals may be treated with certain drugs such as levodopa and similar medications that are normally used to treat Parkinson's disease. These drugs are generally ineffective, but may help with the slowness or stiffness some individuals experience. Myoclonus may be controlled with medications such as clonazepam, however, benzodiazepines should be used sparingly as they may have undesired side effects in these patients. Botulinum toxin (Botox®) has been used to treat contractures and pain, but do not restore the ability to control movements. Baclofen is another drug that may be used to treat muscle rigidity.
Physical therapy may be beneficial in maintaining the mobility and range of motion of stiffened, rigid joints and prevent the development of contractures. Occupational therapy is beneficial in assessing the safety of an affected individual's home and in determining what adaptive medical equipment may increase a person's independence. Speech therapy may be beneficial in treating individuals where speech and language abnormalities associated with corticobasal degeneration. Affected individuals may need devices such as a cane or walker to assist in walking.
A report offering encouragement, advice, and support to those caring for a loved one with corticobasal degeneration, entitled the CBGD Caregivers Report, is available free of charge to all who would find it helpful. It can be downloaded attornadodesign.com/cbgd."
Thank you for the links. I read the first couple of stories and oh my gosh the similarities of what we’re going through are unbelievable! I’ve been in denial and I didn’t want any of what we’re experiencing to be true. I’m going to try and sneak another hour of sleep in and process the rest after the sun comes up. I’m so tired and yet sleep evades me.
The physical and emotional exhaustion is unbelievable with 24/7 care. I think it nearly broke me.
Be kind to yourself... as many snoozes as you can please!
Having said that the stress, worry and emotional load would give me disturbed sleep and bad dreams. I don't know if that is just me.
"Cheers to the beginning of another thankful day." Is that an ironic statement? I love it! Totally memorable... Made me smile. Thanks. (I do dark humour at times)... Needed it in my NHS job!
You must just have taken on so much reading that. I do hope it helps you to settle with a focus.
PSP and caring is the toughest thing I have ever done. I so wish you the best that this journey can offer.
I am very sad because Mom passed away on 7th March. She rest in peace.
We used Clonazepam for Mom for solving her stiffness, agitation and sleeping problems.
We used 5 drops Clonazepam three times in a day. Sometimes, especially, last months, she woke up at the night. At that time we also used additional 5 drops Clonazepam for getting better sleep.
The recommended max dosage of it was 30 drops. Please talk with your doctor before using it.
Thank you for your reply. I’m so sorry to hear about your mom. You have my sincere condolences.
Fortunately hubby is still able to swallow and the Clonazepam that he is taking is still in pill form. Although I suppose administrating drops would get into the bloodstream quicker and therefore could possibly be more effective. At the moment he’s taking the lowest dosage available. Having read Kevin_1’s response, the drug should be used sparingly to prevent undesirable side effects. It makes sense now why the doctor is being so cautious.
Again, thank you for your response and I’m truly sorry for the loss of your mom. My heart goes out to you.
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