It's my first time posting here, there is so much i want to say as this has been the most difficult year of my life, but i will try and keep it to a minimum.
My mum was diagnosed with CBD about a year ago, it started with her left hand and she now has completely lost the use of her left hand/arm. Unfortunately, within the last 6 months her speech has been getting worse and she struggles to find words and struggles to formulate long sentences. My dad has been caring for her but he is in complete denial and refuses to accept her diagnosis. It's been so incredibly difficult to see my mum go from the strong independent woman she was to this empty shell, so insecure of everything.
I suppose my question (out of the many) is if anyone has addressed the issue of depression when suffering these diseases. My mum is, obviously, incredibly sad and depressed. My sister is sure that her mental state will accelerate the disease, but how can we possibly make her happy? Neurologist has suggested psychologist or even taking antidepressants, but she and my dad are not keen on it.
And another question, has anyone found speech therapy to help? My mum is italian but living in france (she used to be trilingual, but now struggles with one language), should she be doing speech therapy in her mother tongue?
Thanks a million for all your help, knowing that there's other people out there that can understand what we're going through makes it all a little bit more bearable.
silvia
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SilP
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My husband (who has now passed away) had CBD. He also had depression and speech loss. We found that an anti-depressant (the SSRI type), worked very well giving his mood a lift and making life a little better for him.
The neurologist and clinical speech language pathologist both said speech pathology would not help as there was no speech-muscular issue or loss of language in his brain , rather the neural connections for word-retrieval were breaking down and speech language pathology would not help that. We worked with picture boards and training ME to ask more yes/no questions instead of multiple choice or open-ended (which would make him try to describe or explain - which he couldnt do, and only caused frustration).
I wish you and your Mom and Dad the best of luck. You’ve come to a very supportive home here 👍😊
Hi, Silvia. Welcome. You may find that answers to basic questions here will often seen contradictory. These diseases vary so greatly in how they affect each patient. My guy had Psp, so Anne's response may be more relevant to you, but we found speech therapy very helpful and even fun. It seemed to stimulate my sweetheart's brain in ways that refreshed his ability to communicate, although only temporarily. We left each appointment talking, and the exercises were like games to us. Everything we did gave us at least the illusion that we could fight the disease for a bit, and that was good for our spirits. Everyone is different, though, and depression is very hard to fight in these circumstances. He also took a mild antidepressant. I don't know how much it helped. I sympathize with the situation you and your family are in. It's awful. This community is great, though. Folks understand. Peace, ec
Welcome to the club that no one should have to join but thank goodness it’s here for us!
Anne G and Easterncedar hit the nail on the head! Everyone is different! My husband was treated for mobility issues which eased his pain. The less pain he had the better his mood. For some weird reason antidepressants made him more confused and it didn’t help with his depression. That doesn’t mean that you should not give it a go. What I’m learning is to only try one thing different at a time, wait for about six weeks before trying something new. If it helps, great! We tried antidepressants first. Several different types trying to get it right. We were not successful. After about six months we stopped the antidepressant and decided to address his mobility issues instead. We thought my husband had CBD but he responded to Carbadopa Levadopa (CL), a drug for stiffness. We were told that most people with CBD do not respond to CL treatment. CL worked for my husband beautifully! So now we aren’t sure if he has CBD or not, but at this point it doesn’t really matter. We won’t really know his disease until post mortem, when a brain biopsy is performed. Anyway, prior to CL he was not able to use his right arm and his gait was affected. He also could not bend his waist at all. CL gave my husband his mobility back and his quality of life improved tremendously!
After about six weeks we introduced a patch called Rivastigmine for cognitive issues. This is also helping him and he communicates better now. Not perfect, but better. So everything is kind of trial and error and it seems to take forever to figure out what works and what doesn’t.
My husband goes to a speech therapist twice a week and he’s been going for a couple of months now. Honestly, I’m thinking about cancelling the sessions because I haven’t noticed an improvement. Hubby seems to enjoy the outing though and maybe it’s good for him. Nothing to lose in trying. Right?
It’s a tough journey with a lot of bumps and turns. We figure this stuff out one day at a time. Find a way to laugh about the strangeness of it all for I’m afraid that it’ll be over too quick!
The CBD syndrome seems to be one of the PSP variants.
These are our experiences with PSP-RS because they could be useful for you:
• Medication against depression, as well insomnia and anxiety. In our case right now (after 7,5 years from the first symptom of PSP): 1 Sertraline-50 at breakfast (depression) and 1 Lorazepam-1mg one hour before dinner (insomnia and anxiety) (**). Of course all these drugs were prescribed by a physician. After around 5 years with this medication no appreciable side effects on our case.
(**) I have read that to improve the patient's sleep are using "Melatonin" successfully. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day.If you are interested see:
Communication: We intend an App but It was not possible to use it for more than few months. As her dexterity deteriorated, she had problems placing her finger on the appropriate word or letter and we were able to buy a plastic screen cover that had an opening for each key on it; this helped to direct her finger and keep it one the right letter. Another problem she developed was the inability to tap her finger in a key or letter, and as such she would often have several letters in a row. For example if she tried to tap the letter A, it would show as AAAAA because she could not get her finger off the letter A quickly enough.
Some have successfully used for some time a cheap iPad plus free software text-to-talk program called Claro (claro.com) with a BigKeys keyboard that attaches to the iPad through an Apple device that is used for connecting to camera to an iPad . A voice comes from the Claro program. It's like a GPS voice.
On our case we have used a plastic laminated A3 sheet with the alphabet in large letters (40x40 mm) supported on a music stand at the height of the patient's eyes. She points to the letters and another person writes on a blackboard the letters that she indicated.
You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. Over time the pictograms become useless and it is necessary to use only letters, as large as possible.
The communication with a patient of PSP is one of the most difficult problems to overcome.
When the patient can still verbalize it is important to know that saying NO requires less muscular effort than saying YES.
When verbalizing is almost imposible and the “communication panels” don´t work, to say YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a squeeze is YES and no squeeze is NO.
There will come a time when the answers are slow and even erratic. In this case, it may be better to prepare the patient and tell that you are going to ask for a response later to a question that you are verbalizing at that moment. When the disease progresses, the response is slower, until making a thumb gesture or squeeze your hand may need at least 20 seconds.
To write down a big YES, NO on a sheet of paper and the patient could point to the correct one seems to be a good alternative.
When all fails, sticking out the tongue to indicate "YES" can be a solution.
Recently there has been an information related to ALS: Voice & Message Banking (Susan Mast ALS Foundation) that may be applied to patients with PSP.
Hi Luis, thank you for the very informative response. In my post I forgot to mention that hubby takes Clonazepam at night for sleep, agitation and spasms. Communication is tricky and you covered a lot, thank you!
Sorry to have to welcome you but glad you have found this amazing group of people who have made such a difference to my journey over the last 2 years.
As people have said everyone is different, which is one of the big challenges with PSP/CBD, so inevitably its a case of suck it & see, if something works for your Mum great, but generally you have to try to find out.
My Mum has PSP and is on a low dose of Sertraline, it has made a big difference to her mood & level of anxiety, which was leading to reckless behaviour & falls, but it took a while for her to agree to try it. She also has been given speech exercises - I feel they have been helpful and she has kept some degree of speech so far, though it can be quiet & indistinct. As we don't know what would have happened if she hadn't done the exercises who knows if they work or not, but Mum was quite motivated to do them and still does do them at times and will do them on her own (they involve saying aaagh as loud as you can, and she has been known to have new carers come running wondering what's wrong, when she has just started doing them with no warning !), so I think they have been good for her mentally if nothing else.
My mom had PSP and l found that trying to put myself in her shoes mentally helped me immensely. Acceptance of the many changes is difficult (especially if family members disagree about treatment). Researching older post on this site about CBD will answer a lot your upcoming questions. For a short time mom had speech, chewing & breathing classes. She was not happy with any of them. Frustrating as it was for her l felt the extra attention was at the very least giving her something to do... but then the time came that she could not physically or mentally participate. Do the best you can to be supportive. Sending you & your family hugs... Granni B
SewBears statement, “Hubby seemed to enjoy the outing though...” was something I could have said when my husband was alive. He tried speech therapy and hated it. He didn’t like physio therapy or other exercises either but loved to be out in the fresh air. I tried to get him into the other therapies but saw how unhappy he was. I knew the end would be the same so thought he may as well enjoy what time he had left as much as he could. I wasn’t going to put him through anything that he hated and which I knew would make little difference. Instead we worked out ways to communicate while he still could. In the end it was a slight movement of his thumb for yes or no but asking short questions we managed to communicate and he managed to make decisions until the end. We went out several times a week and I invited people into the house, including him in the conversations although he couldn’t speak. He had a funny humming laugh and we managed to laugh about something every day, usually several times a day. In bad weather we would go somewhere indoors, usually garden centres but his favourite places were to the beach or public parks and gardens. The speech therapist once commented that many people stop talking to loved ones if they don’t get a reply. This was after I was relating a telephone conversation I’d had, back to him, that I’d taken when the therapist was here. Fortunately he never showed signs of depression. As has been said, everyone is different so what would please one person may not please another. As well as going out, C enjoyed story CDs, visitors who told him about their lives, not talking about illness, listening to music and the radio, seeing children our own grandchildren or those playing in the park. Tears rolled down him face when I took him in his wheelchair to a children’s singing concert. When I asked if they were happy tears, he put his thumb up.
I hope your mum’s depression lifts and your dad can make happy memories with her before she leaves him.
Hey Bev - good to see you.r name. I miss my friends here, now that I'm no longer so dependent on you all. I'm always grateful for you, and the help you and the others gave me.
Good to hear from you Sarah. How’s things? I keep trying to leave here but as you say, I also miss my friends, although I do manage to see some which is good. I am also grateful to all who helped me during those long hard years. I often think back at how we all kept each other going and the on line parties Jill organised. I see she still ‘likes’ occasionally but I do wish someone could speak for her so we know the current situation.
Hi, it's like the "good ole days" seeing both your names together! I do try to wean myself off this site, but just can't leave my family and friends. What would I do to fill the time I spend on here??? Equally I remember well the feeling of being alone in this evil disease, I just can't let anyone else go through that, if somebody reaches out on here, us oldens have to be here to listen and try and pass on any relevant knowledge that we learnt the hard way. I know I wouldn't have survived without having somebody who had heard of PSP and knew what they were talking about. I shudder each time I think of what it would have been like, without this site.
Off to South Africa in a couple of weeks!!! Finally plucked up the courage to return to my old stamping ground. Very, very excited. Looking forward to showing Bryan all my favourite places. So in answer to your question, I am not ready for Christmas, I have two weeks to get it all sorted, haven't a clue who will be here or what presents I am buying. Hey ho!!!
I am sure it will be Jean, think I am ready for that. My sister and husband are joining us half way through, so she will sort me out, if I get out of control!!!
Hello, I don't have a lot to offer you except to echo some of the suggestions already made. Especially that Carbidopa-Levidopa CAN help some people with CBD and to try one new thing at a time so that you can evaluate whether it is useful. Somehow, my husband has managed to escape the depression that can accompany CBD. I do believe that one thing I may have done "right" in all of this is to keep him in situations where he can interact (even mostly just listening to) others. His power mobility chair has been a godsend in that regard. He can't make conversation because of word retrieval and processing problems, but he very much looks forward to our daily, weather-permitting "walks" of 2-3 miles around the neighborhood in that chair (Quantum Edge 3) . He sees the seasons change, glories of nature and people walking or driving by. If we encounter someone we know, they stop or roll down the window and they say hello to him. Even strangers will give him a wave, as their hearts are big enough to know that someone severely crippled in a mobility chair is brave and strong and well worth a greeting.
Dear all, I would like to thank you all from the bottom of my heart for taking time to reply to my post. It's so useful and reassuring to hear from people that have gone through/are going through similar experience.
We are lucky at the moment that my mum is still very physically active (she runs 10k a day!). But there is no denying that the disease has changed her dramatically, and worse of all she has cut all ties with her friends and sisters as she is too embarrassed of them seeing her in his condition.
We are going to see another neurologist next week in Paris, and I will try and discuss some of our advice with her, I'm also hoping to get her on a clinical trial that is due to take place in France.
My wife has PSP-RS that has many symptoms similar to PSP-CBD.
Under medical prescription we have been administering antidepressants for more than 5 years with satisfactory results and without appreciable side effects.
This is our experiences regarding medication:
*Symptom control: Most people only take medication for symptom control.
•Control of palliative medication against depression, as well insomnia and anxiety. In our case right now (after 7,5 years from the first symptom of PSP-RS): 1 Sertraline-50 at breakfast (depression) and 1 Lorazepam-1mg one hour before dinner (insomnia and anxiety) (**). Of course all these drugs were prescribed by a physician. After around 5 years with this medication no appreciable side effects on our case.
(**) I have read that to improve the patient's sleep are using "Melatonin" successfully. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day.If you are interested see:
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Sister just diagnosed with CBD
Mums CBD Struggles - Physio
Do anti depressants work for PSP patients?
End stages? not sure, any advice
Would a GP have accurate information about life expectancy of someone with CBD?
