PSP Association
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My Mom and Dad have PSP.

Hi all

Both of my parent have PSP I live in PR and my mom's PSP is more progressive than my dad's. Right now my mom is having hallucination she was fine until the dr gave her Zoloft for the depression which she didn't have and slowly they started taking it away and now she having hallucinations. Both of them are in a home because I still work, but I see them every day. My dad biggest problem now is his leg he has no control of it is like he has weights on it and his double vision and they both are always dizzy. Any suggestions on my mom hallucination and my dad’s symptoms.

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Hallucinations are not part of PSP. When we hear about hallucinations and parkinsonism, we think of Lewy Body Dementia. Is she entirely off Zoloft now?

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Yes she not taking Zoloft right now. That should of been given to her in the first place she not suffering of depression.

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Hello - my husband has hallucinations also worse when he has an infection. The care home do a urine dip test monthly to rule out infection and sometimes more than that if I ask them to. If sleep is disturbed or anxiety sets in that also can cause hallucinations with him.

Issues with a limb suggests CBD? Dizziness is expected and a real problem with my husband. He has an orthotics hat to protect his head from falls of which he has many! I understand that falls will be to such a stage that a wheelchair is the only option. The only medication is on is Amantadine for Parkinson's and nothing else.

Hideously awful for all concerned. Wish you well, both parents with the same issues, beyond belief.

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yes it is and also sad.

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I'm very sorry for you and your family, Judith. I wonder if anyone has suggested an explanation for this rare situation, both members of a couple with this unusual illness.

My partner also suffers from a weak leg. It was the first symptom we noticed. It has gotten worse, although physical therapy has helped. The dizziness and double vision bothered him greatly for a long time, but eventually faded, although perhaps he just got used to it.

Hallucinations are often a sign of infection, but are also potentially a side effect of several drugs used for Parkinson's and incontinence. We were warned to watch carefully for that as these drugs were tried. If infection is ruled out, I would look to her medication. Coming off of Zoloft can cause mental problems, too.

There's not much good help in this message, I'm afraid. As you probably know, PSP doesn't respond to medication very significantly. How long ago were your parents diagnosed? It must have been unimaginably traumatic.

Best wishes for better times, Easterncedar

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Eastern that was the first thing I noticed about my husband. He was dragging his right leg and I'm not even sure he noticed it looking back now. I kept an eye on him and noticed how he shuffled when walking across the floor. I knew it was a sign of Parkinson's but when I mentioned it to a consultant (he was being treated for Leukaemia at the time!) the reply I got was " what do you expect, he's got Leukaemia ". I have been wondering if the chemotheraphy tablets he was on had any bearing on his symptoms but I really don't know. So much unknown about this?

My husband described it as though he had a lead weight attached to his foot. He decided he needed a walking stick after an episode where he said he couldn't walk in a straight line. I wasn't with him at the time so don't really know what happened to him.

Marie x

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My husband said he had to think his leg to move ~

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My mother been with PSP for 5 years and my das 3 years. I really think is the Zoloft that did the damage.

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My guy is currently taking a low dose of Zoloft. I am sometimes worried about that.

Depression does seem to be a risk factor for some of these diseases, and that has been an issue raised by many of us here.

I have also wondered about the effects of statins, like Lipitor. Some people have terrible muscle damage from those, but there doesn't seem to be much attention paid to more subtle damage, although some studies have suggested a link to dementias, too.

I'm sure you have unfortunately had to think about all these things.

Has any doctor offered any ideas about this to you?

Peace, ec

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Hi. My husband has had hallucinations but they have always been brought on as a direct result of new medication. He has CBD and all the Parkinsons meds made his balance worse and caused the hallucinations. He recently had new antihistamine for an on-going rash which immediately affected his balance and caused hallucinations.

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Sorry to hear you are going through this with both parents at the same time. My dad had hallucinations I believe caused by meds but we stopped meds and he still had some. Not sure Drs consider it hallucinations they just said he was confused or had dementia. They never really were able to stop them. Once meds were stopped they didn't seem to be as frequent. Parkinson's meds didn't help him much. Side affects outweighed the good it was doing so we stopped it. Good luck and make sure you take time for yourself. Lots of love, hugs and prayers for all of you.

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Hi, like your Dad, we are at the stage where we are weaning Dad of the Parkinson's meds. And I have seen an improvement!!!! We have gone from him waking me four times a night to get him out of bed, to him waking me just once last night. I'm very thankful for small mercies. We even took him for a drive today - he has refused to go anywhere for months. His numbness and pain in his leg seems to have decreased and he has more clarity and is 'joining in' more. I kniw that this will be temporary but I'm so enjoying having him back for the meantime. Hi s hallucinations are very rare now. He is on Madopar, three times a day. No meds at night except Panadol Osteo to initially help with sleep. Lyrics for nerve pain twice a day. Lots of love, respect and support for everyone that is going through this xxxx

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Have they both been diagnosed by a neurologist? Are they originally from the French West Indies. Do you have the fruit, sour sop or custard apple. Did they drink herbal teas. In the subtropics there is a fruit of the Annonaceae family which is consumed for many reasons usually in n herbal tea (so I have read) . It has been the only or one of the few environmental culprits of PSP. That both of your parents suffer from this disease, I am wondering what they may have both done together, eaten together used as lotions or soaps together etc. With this being said , an evironmental factor may have larger consequences than just your parents...If it is not environmental then the consequence narrow down quite a bit to just you and those who share their DNA! For science sake and those who may benefit from the knwoledge you bring I implore you to get tested, talk to someone such as PSPA or CurePSP.org to find outr if your parents and you should be tested for environmental and or genetic links to this disease. I try not to be this harsh the first go round but do you see the implications here....you and your family may have something that no one else can provide for the cure of this damned disease....Ask your doctor or especially those two organizations if your life can benefit others, please.

Thank you AVB

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Hi

AVB

Yes I agree totally with you. I live in the Caribbean Puerto Rico which is close to Grenada which they have a lot people with PSP and we do have the fruit sour sop which they both ate during their life. They also lived near a rainforest which has an antenna that I feel has a lot to do with it. They both been diagnosed by a neurologist, but neither have in interest in referring their case to see as why both of them have it. I will have to look into see if CURE PSP has an office in Puerto Rico.They are not related to each other either. I also feel that something can be discover with them but just don't know where to go and no one else seems to care. All I know this is one of the saddest thing to see your parents in a body they can't control and their mind are clear. My mom is having her hallucinations because of the Zoloft they took away. And also too much Sinemet can cause . Hopefully I can find who can grab in interest for the sake of a lot of people.

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I wondered about sour sop as well. That could explain it, as it seems you are well aware. There must be some relief in that. There have been a few, not many, people in this community who have a family history of apparent psp, and that is scary. One of my sweetheart's children had a detailed survey of her genes before she decided to have a family. There's Alzheimer's on her mother's side, too, so she had concerns, but her risk factors for that appear low.

I hope you are taking care of yourself, Judith. It's hard not to be consumed by the illness of a loved one, and you obviously have an especially sad and difficult situation.

Peace, ec

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Call CurePSP Toll-Free: 800-457-4777

Phone: 347-294-2873 (CURE)

these phone numbers may help you and since PR is a territory of the US, it should be easy to get in contact with them.....

goodluck,

AVB

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My Husband has hallucinations. They were bad in the beginning (about 5 years ago), saw people all the time. it changed to animals and then insects now recently he sees shapes. He has not been on any medication that would cause this. When I asked his neurologist about them, the told be me it was because his brain was dying. It's not always medication that causes this symptom. He has all the symptoms of PSP including the "humming bird" look on an MRI of his mid brain. He is able to deal with the hallucinations, especially now that they are just shapes. It was very disturbing to him at first, but if he closes his eyes they disappear.

He does have dementia of and on also. I do think that some of these neuro -degenerative brain diseases overlap each other, and you can have symptoms of several diseases.

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My wife who displayed first symptoms 11 years ago : yes, micrography 11 years ago! Treated for Parkinson during 7 years until new symptoms made it clear to me and later (!) to his neurologist that it could not be Parkinson but PSP! At that time I decided to stop all Parkinson related medicins (mostly Sinemet). Her conditions continues to evolve very slowly with no change after having stopped Sinemet. In fact she suffers from a very slow evolving form of PSP.

She has also some hallucinations. Not severe. Not on a regular pattern and I was not able to relate to what she takes or does not take anymore. I convinced her to take Co-enzyme Q10, methyl form of vitamin B12 and Astragalus. All 3 products presumably helping to oxygen the brain.

At one point in time, she took the product being in phase 2 test in the US, a product available commercially but only in the US and that I manage to get here in France. Forgot the name but had no effect any way. Except bad secondary effects on the liver.

I agree with some posters that the fact that both of your parents have the desease (if it is really PSP for both) is extremely interesting from a science point of view. So little is known about it! I encourage you to supply maximum information to organisations such as PSPCure;

I am sure there are different factors at play but just compiling different factors can be of big help!

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Hi, this is my first post on this site. My husband was diagnosed with PSP in March this year after a misdiagnosis of Alzheimers. I am curious what dosage of CoQ10 your wife is taking? We started going to a new doctor with certification in functional medicine who is very willing and knowledgeable about using supplements but we haven't added that. Working to heal the gut and maybe slow the progression of this disease. Thankfully he is still mobile enough to continue his Sr Fitness classes on his own with some adaptation of the exercises. She recently referred us to a functional neurology clinic here in Portland Oregon. I will check with them regarding the CoQ10 and share our experience in this clinic after our appointment this week. Thanks to everyone who posts here. I have felt quite lost trying to figure out how to adjust to the changes that are happening without turning into a raving maniac.

KandK

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