Me again, sorry we have no one else to ask for advice.
My mother in law is rapdily declining before our very eyes - it is frightening to watch. She is no longer having the panic attacks and sleeps better, no longer hysterical and has stopped going 'walk about', probably due to the antidepressants and the Clonazepam. But the number of falls and cognitive changes are terrifying. She dozes alot, speech is slurred and almost silent, she rests her chin on her chest all the time. Takes two people to lift her and move her, she drags her feet and cannot lift her legs. She had a dreadful fall on Friday last, when her husband was in the loo, when she managed to get out of her recliner (still no idea how) grabbed her walker and fell hitting her head on the fireplace. Needless to say it was tramatic for all concerned, I got the call and rushed to the house and there was blood everywhere - the ambulance men were fantastic but had never heard of PSP. She was sent home from hospital (unbeliveably) with 7 staples in her head. She is black and blue all over and her day involves being helped from bed to recliner and back to bed again, its no quality of life. All this is happening so very fast. Is this normal for PSP? Could the Clonazepam be too much (6mg/day)? Sorry for going on so much. This is a hateful illness!
Love Bubbles
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Bubbles1
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Hi Bubbles -In my experience -6mg of clonzaepam is way too much - my dad was extremely rigid and had some anxiety and started on 2.5mg per day - he had .5mg at 6am/10am/2p/6/10p -eventually we increased the dose to 1mg at 10pm to try to get him through the night and used .25 as an as needed for really bad days - even at the end the most my dad was on was no more than 4mg - - -I would definately pull back on the clonazepam -
Please don't apologise for asking questions on this website - that's what it's here for!
I'm so sorry to hear of your mother-in-law's deterioration. This disease is truly hateful and does rob sufferers of any real quality of life. Many people end up going from bed to chair and back or even become totally bed-bound but from what I understand it doesn't usually happen so rapidly as it seems to have done in your mother-in-law's case. With Mum we have found that quite often deterioration coincides with illness or infection so it maybe that she has an underlying infection and it would be worth discussing it with her GP.
Whatever you do DO NOT change the dosage of her medication without discussing it with her GP first! If your GP is not very familiar with PSP he can find more information on the PSP association website under the section for professionals (pspeur.org) where you will also be able to find contact details for the PSP nurse for your area, who can be very helpful and supportive.
Come back to the site as often as you can/want/need to - we all know how hard it is to deal with this disease and how very alone you can feel at times.
I mentioned the possibility of her having an infection following my last question to my father in law, at the time she had just been seen by her GP, there doesn't appear to be any infection. No temperature, coughing, vomiting, rash, urine infection, nothing obvious to suggest an infection, but I'll get him to call their GP in the morning. I'll also get him to query her meds.
She has gone from using a walker slowly and feeding herself on Friday morning to not being able to get up and needing spoon fed today. Its unbelievable, this is happening before our very eyes. She can't lift a spoon or hold a cup today! I was wondering if she has had a stroke, her right side is weak and she can't left her arms. This has all happened since that dreadful fall on Friday evening.
Their GP is not familiar with PSP, in fact I printed off the information booklet from this site for him!
Hi Bubbles - It sounds like your GP is just taking stabs on what might work. What is the goal of clonazepam? Is to to address anxiety and muscle spasms or is it being used as a medical restraint? Please understand that I'm not trying to offend, just trying to understand and understand what your doctor's goal is with the medication because I am amazed that he put her on such a high dose and she is clearly overmedicated - -the biggest side effect of clonazepam is heavy sediation. If you want her "out-of-it" and not able to do anything - 6mg of clonazepam a day will do just that. What are your stated goals with your doctor? For example our stated goals with our doctors was alertness with comfort and safey. We did not want to ever over medicate our father but wanted to address the symptoms (BTW -the triangle shifts as the disease progresses -meaning at times we had to "sacrafice" alterness for comfort and comfort for safety etc). I am not suggesting that you are trying to over-medicate your mom - I am suggesting that your GP just doesn't know enough about PSP. Our family walked into clonazepam very differently - much more cautious/slow/and much lower doses. We in fact we experienced what you are experiencing just not as extreme at first - pulled back on the doses, and tweeked them from there. Our nuerologist worked with me on the right dosing of this medication to make sure that it was addressing the symptoms without causing heavy sediation. He looked to us to tell him how dad was responding. The biggest side effect of clonazepam is sedation which is what is happening to your mother - she simply is getting too much. ---in older adults recovering from large doses of clonazepam takes longer and falling is a major concern. it is important that you call your GP immediately regarding the clonazepam and dosing if you are uncomfortable making that decision but as a carer we sometimes have to make some medication decisions if medications are having an adverse effect especially if pulling back on the dosing doesn't hurt the person and it won't hurt your mom -it sounds like the higher doses are doing her far more harm. I bet that if you were to pull back on the dosing - you will see much improvement but if she's got a lot of it in her system -it can take a little time. Do some research on clonazepam -it's a pretty powerful drug. I did research on every drug my dad was on after a care home overdosed him on lorazepam following a GP's and Hopice orders - so they don't know everything especially when it comes to PSP (-and lorazepam can have a negative effect on people with nuerological disorders and make symptoms worse). Our neurologist told us the 4mg per day was the ceiling in dosing so you probably need to take it down to 2.5mg per day on a dosing schedule but call your doctor and tell him what you are experiencing. I would be very suprised if he didn't suggest a lower dose. Don't be suprised if it takes a week after lowering the dose for her to recover. Clonazepam is a muscle relaxant and can cause very heavy sedation - -there are also other downsides - a muscle relaxant relaxes all muscles including the throat muscles so take extra care in feeding. I have 10 yrs of PSP under my belt and my dad was "text book" PSP. We had tried everything under the sun until we found our PSP nuerlogist and the medications and dosing that he had my dad on had made such an amazing difference. Our neurologist was also my dad's hopice doctor which is usually unheard of but he was so concerned about my Dad's GP not knowing enough about the medications and progression of the disease that he was willing to take this on. I also charted everything my dad expereienced every day - charted his medications and charted whether medication worked or not, how long it took for effects if any - -this was really helpful in working with his doctors and it was helpful to note changes and progressions/platues. Charted every input & output. I have 10yrs of notes and charts/MRI's/cognitive tests etc. so I do have knowledge, been through what you are experiencing now, and I would never suggest anything that would put anyone in danger. Your mom is simply getting too much clonazepam.
It sounds like she is traumatised after her fall, as others have mentioned psp usually progresses incrementally and not so suddenly. You may be right she may have had a stroke or is still carrying some injury. Remember too that the person can go really downhill if they do not get their regular medication on time, she could be having withdrawal symptoms if she missed some of her medication. I feel really sorry for her and these falls are distressing for all involved.
Hi Bubbles. Very sad to hear of your Mum in Law's rapid decline, and although each patient is different there are a lot of similarities as well. My Father can no longer walk, talk or sometimes even sit, but in the early days of him being diagnosed we also went through a very traumatic stage when he was falling on a daily basis. The last time he was in hospital they x-rayed his lungs (for pneumonia) and found he had 11 healed cracked ribs. This happened over a few years, but the Doctor was quite shocked. I have to add here that this Doctor had no idea what PSP was and we had to rapidly explain. My Dad was always full of cuts, bruises & bumps. Although my Dad never had panic attacks like your Mum, he was extremely restless and did not want to sit still for a minute, causing a tremendous amount of tension and stress for the family. Most of the time he did not even know where he wanted to go, but just had to move. Please take care and keep in touch. Love to all.
I understand completely what you are going through. My Dad was diagnosed 4 years ago and now he can't speak, eat, dress or walk. It is so very sad that at times I can't believe he is still alive. Thankfully the disease has changed his personality and he is always smiling and loves to hug people.
Unfortunately, those of us who watch our loved ones change so drastically it is such painful and sad experience. My heart and prayers go out to you and your family. This group has provided me with understanding and caring that most people can't (only because they don't understand PSP, most of my friends and family had never heard of it before.
Sorry for rambling. You and your family are in my thoughts and prayers.
yes i agree with what dee dee adn coleen have to say]falls can be devastating ( (i am fallign 4 or 5 timets daily now (down from over 20 w times a day when reallly stressed)
i can sitll talk withj difficulty an still walk bnut ocmmunication is gettign more d ifficult esp with peopel who do not knwo abpjut PSP and tend to htink i am drrunk1
the restless nature o Psp is v diffiuclt both for me as patient and carers to deal with
ssorry i cannot be of more positiv ehelp and plz give ourru inlaws our htoguhts amd ,messages to allyour family
I understand exactly what you are saying and I am also concerned that she is being over medicated.
I asked my father in law to speak to their GP again and during a house call he said that this wasn't the case and that it was needed to manage her anxiety and hysteria. So, my father in law called the PSP nurse for advice and told her everything that was happening. She was very kind and helpful and I think he was glad to speak to someone who has extensive experience of the condition. She has recommended that my mum in law have a palliative (?) care assessment at the local hospice. That way they can assess all her health problems alongside the PSP and determine if the medication is appropriate. The GP has agreed to this today. I'll be alot happier after that assessment. Her neurologist last saw her 8 weeks ago and we are awaiting another appointment. We are getting more help in the form of carers at bedtime, a hospital bed and a wheel chair. But her GP thinks that the speed she is deteriorating at that she will be in a home sooner rather than later
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