Seeking some Advice on PSP: Hello, nice to... - PSP Association

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Seeking some Advice on PSP

eppendorf
eppendorf

Hello, nice to meet you all. My husband started to feel unwell around 6 years ago which was attributed to severe anxiety. He started to feel dizzy, and used to fall backwards having no control and banging into whatever was behind him. He also had episodes of shaky hands. At the time he was reduced to walking with a threewheeler outside for about an hour, then returned home so exhausted he practically collapsed on the doorstep. The Doctor said he did not have Parkinsons. Eventually this year he managed with the help of an ambulance to have a Datscan done at a large London hospital which showed abnormality in the brain and he is now presumed to have Parkinsonism - which could lead to PRS or Muscle Palsy etc. they are not sure. He has now passed through the wheelchair stage and has been totally bedbound for two and half years. His condition now is rigidity in the body and hands, only has a slight grip. His brain is not affected, and he is has a very sharp

memory etc. He has to be fed most if his meals, as he cannot grip plate properly, has a proper up and down gaze and his speech is OK. He has tablets for anxiety and depression, dopamine for the stiffness and one or two others. The question is he suffers severe pain all over his body most days, but despite wearing strong pain patches and taking pain killers as well this seldom lets up. He is now 6 years down the line from the first ill effects and doesn't seem to be deteriorating that fast at present. Obviously it is a very despressing life and he is stuck in the same bed all the time. I cannot get him out of bed into a wheelchair or push it myself as it is specially made for him as he has arthritis in the lumbar region. However, the pain he has is not only in the back but all over. Does this follow anybody else's experience of Parkinsonism or the dreadful PSP. I would be interested in your comments.

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Hidden
Hidden

Was he ever around a area where he would of picked up ticks,thinking outside the box,I know here in canada our testing for Lyme disease is very poor.Many Lyme symptoms, such as fatigue, cognitive impairment, joint pain, poor sleep, mood problems, muscle pain, and neurological presentations also occur in other diseases. Hence, the symptoms of Lyme disease significantly overlap those of chronic fatigue, fibromyalgia, rheumatoid arthritis, multiple sclerosis, Parkinson’s disease, ALS, depression and Alzheimer’s disease. Many Lyme patients report being misdiagnosed with a different condition before being properly diagnosed with Lyme disease.

Dee in BC

eppendorf
eppendorf in reply to Hidden

Thank you Dee. I know Lyme disease can be a very big problem with people and makes them feel very ill. In the last say 20 years we have never ventured much into the woods, and live in a fairly built up area just outside of London. we have at the moment a new physio here at home and she has suggested that because he has severe lumbar region crumbling of bone, the nerve endings in the spine radiate out all over the body causing widespread pain. I think she may have hit it on the head. Anyway, I am interested in all replies and thank you for taking the time to contact me.

My mum has severe lumbar region crumbling as well. 1 lumbar vertebra actual crumbled and flattened after one of her last backward fall. Before that scans had already detected severe osteoporosis.

Thanks Angeline Amy, my husband started falling backwards and hitting furniture etc. very hard before hitting the floor. I was always amazed that he hadn't damaged his spine more. As mentioned, he is suffering from arthritis and crumbling vertebrae in the lumber region, hence all the pain. He is now completely bed-bound and his legs wont support him any more. Is your mother still walking around, and what other symptoms show that she has PSP, we are still not sure about my husband's diagnosis. He has been poorly for around 6 years and bed-bound for the last two and a half. He is fully alert, perfect memory - only his body is letting him down. Does our mother take any good pain killers? regards Janet.

Hi Janet, Mum is bed-bound and like your husband her body has failed her. She was diagnosed late 2013 after the neurologist eliminated Parkinsons as she was not responding to the drugs prescribed and he detected PSP after a series of tests including the gaze test(where he made her follow the movement of his pen sideways, upwards and downwards) where he found her eye movements were restricted . Muscles start freezing over time and mum's hands are now held tightly against her body and her fists clenched. She lost her ability to speak right before she lost her ability to swallow whereupon the hospital introduced tube feeding feeding. I can see she is in a lot of discomfort with the stiffening and contraction of her tendons and ligaments etc.. Her muscles have atrophied. Sometimes I find her with tears streaming down the side of her face. Mum is aware but is slipping away as she tries to cope with her discomfort. When her left hand was still able to move she used to pull her feeding tube out. She also struggled with the urinary cathether which was applied on her since late 2016 after her bladder muscles stopped working causing urine retention for half a day or more leading to Uti. Now being in an extended care hospital the medical staff will look out for that as well and treat her as soon as detected. I used to have to rush her to the hospital late night of middle of the night for urine retention. All muscles stop taking orders from the brain progressively and even her eyelids are mostly closed. Only when I ask her or if she senses my presence she will open her eyes slightly and briefly. She is not on painkillers. She was prescribed small dosage of Xanax to relax her and allow her to sleep at night. My heart is broken to bits and I am beyond crying now. I know I will cry my heart out the day she leaves as we were very close. At the same time it is so hard to see her suffer like this. Had to surrender her to expert hospital care as soon as the tubes had to come into the picture. Sorry that your hubby is suffering this way too.

hugs

Angeline

Hello Angeline, my heart bleeds for you and all the suffering you, and your mother are going through. Such a cruel, cruel illness. Your mother knows you are always there for her and love her deeply. God bless you both. She sounds as though she is getting the best of care, and there is not much more that can be done.

In comparison my husband is still in good shape and has most of his faculties. He can eat, speak, urinate in a urinal and enter into any kind of discussion. His vision is also not affected - it is mostly rigidity, and pain in the body, and not being able to get out of bed, or go anywhere. He also has his crying moments. It seems to affect everyone differently and we don't know what and when the future holds. I will be thinking of you - love Janet.

thank you Janet. we have to be strong.

I think she might well have hit the nail on the head with regards the pain. If the DAT Scan has shown an abnormality however it would seem there is also something else going on. When do you get the result? If it's the hummingbird sign they have seen it means he has PSP sadly.

I am surprised you were not told when you were there but assuming you have an appointment with the Neurologist VERY shortly?

Good luck with all of this. It sounds as though your husband could be quite advanced if it is PSP. If they haven't given you an appointment make a nuisance of yourself and ring them until they do! Poor man. Poor you too.

Tell them you want to know the truth. Some try to hide the truth others give it full force! It would be nice to have the truth but with understanding? The fact they appear to have mentioned PSP makes me think that's what this is.

Ask though as they should have made it clear. Ask your GP has he had a letter from them too. Have your husband had a letter from the hospital? All of this is so hard to take in. Check to see what it says if you have had a letter?

We are always here for you.

Marie x

eppendorf
eppendorf in reply to Marie_14

HI Marie, thanks for taking an interest. I am totally confused, we have had the result of the DAT Scan and the Neurologist writes "your scan does show a Parkinson's syndrome, although this may not be Parkinson's Disease. We decided it is Parkinson's Syndrome such as Multi System Atrophy or Progressive Supra Nuclear Palsy with possibly anxiety worsening his symptoms" I don't think the doctors are really sure at all, nor are we. It is a horrible illness. Bye xx

Marie_14
Marie_14 in reply to eppendorf

Right if I got that letter I would think he has PSP or MSA. Maybe both. My husband had both. So that is possible. As they both overlap it's pretty difficult to tell. Can you not ring and ask if his scan showed the hummingbird sign?

What hospital did the scan? No way should you have to take your poor husband to an appointment but as his next of kin you can ask questions?

Hugs to you.

Marie x

eppendorf
eppendorf in reply to Marie_14

Hi Marie, Bernie's scan was done at Kings College Hospital, London about 7 weeks ago. If this hummingbird sign had been there, Our neurologist would definitely have said he has PSP, but her and her team are still undecided, and I don't really want to find out that disasterous result. If you don't mind me asking, has your husband now succumbed to this dreadful illness, and how long was he ill for in total. If this is a painful answer for you to relate, please don't reply I fully understand. xxx

Marie_14
Marie_14 in reply to eppendorf

Yes my husband has died. He was told he had signs of PSP and MSA at his first consultation. That was 14 months before he died as he was already in a wheelchair when we saw the Neurologist. So he was quite a way down the track. He also had Leukaemia and the Haematologist thought his symptoms were related to that. It was only when we saw a Neurologist that we were given a proper diagnosis.

He had symptoms for some years looking back but when he was diagnosed with Leukaemia it was a case of fighting for the best treatment. He got that eventually and when he died was in remission. However as his Leukaemia got better his other symptoms continued to progress.

Can I suggest you read the MSA Trustees website? It is quite possible to have it for years as it is to have PSP for years.

Can I ask have you had CHC funding approved? You should have it. The best place to contact is the Hospice. They will make sure you have the equipment you need. They will also give you a break. I wouldn't ask him for permission either as reading your old posts he hasn't been co-operative?

Someone just mentioned CBD and that is another possibility. That would account for the aggression. The best thing to do is ring MSA Trustees and PSPA and ask for help and advice. However I recall a consultant told you before that he has PSP? You need a firm diagnosis at the end of the day. Then you can go forward. One thing at a time? Make that and contacting the Hospice your priorities. Then you will know what you need.

You are entitled to a second opinion by the way so you could ask for another Neurologist to look at the scans? Maybe someone who specialises in PSP? It might be a process of elimination. Good luck, but get that diagnosis!

Marie x

eppendorf
eppendorf in reply to Marie_14

Thanks Marie, I will look into it all, thanks for your detailed comments. xx

Indeed: "poor man and poor you too." Pain is not good. What about morphine? (In the US, we call liquid morphine "Roxanol.") Or methadone? Or a pain pump?

raincitygirl
raincitygirl in reply to rriddle

Robin, is it likely PSP if bedbound for over 2 years, yet no gaze problems and no swallowing problems, and not appearing to decline...? Eppendorf's husband sounds quite different from what others have reported...

Anne G.

Re pain. I suspect your husband has not been outside much and may be suffering from lack of sunshine i.e. vitamine D. Check with your GP. If he agree, will prescribe correct dose. Depending how you feel about having on prescription what you can buy may prescribe ibe them for you. Above based on my wife's experience when suffering PSP.

Ivan

eppendorf
eppendorf in reply to Sayer

Hi Sayer, I completely agree. He has seen so little sunshine and light from outside, that our Doc. says he is very deficient and has now prescribed Vit D tablets. However this has had no affect on the body pain. I think our Physio was correct. As he has crumbling and arthritis in the spine, the nerve endings that radiate over the body are possibly inflamed.

Thanks for your interest.

Did your husband ever show signs of "alien limb" before the rigidity set in? Did the rigidity start primarily on one side? Since you say his gaze up and down is still proper I would like to mention CBD as a possibility. ... He sounds a lot like my dad.

Ron

eppendorf
eppendorf in reply to Dadshelper

Hello, thanks for responding. I would not know what a "alien limb" was, but I guess it means a non-functioning part of the body - as in a Stroke down one side. No his rigidity is mostly in his upper body. What are the symptoms of the lesser known CBD - I haven't a clue. Is your father suffering with this condition at the moment. How does it differ from PSP? Sorry to be so curious but every bit of information is helpful.

Dadshelper
Dadshelper in reply to eppendorf

Alien limb is a hmm uncontrolled movement of a limb, there a few video on YouTube of it.

Dad does have this to a degree and it the the 1st thing the neurology movement specialist noticed at dads initial visit years ago.

Ron

My husband has CBD and the "alien limb" on the left side of his body (mostly arm but also leg somewhat) is what pushed his diagnosis from PSP to CBD. Otherwise the two diseases are, I think, almost indistinguishable. He can't control his left arm or leg very well. His brain forgets he even has a left arm: he tries to do things like put a sweater on, or pick up something and fumbles constantly with his right hand, while his left is hanging by his side. I have to keep reminding him to "use your left arm".

I'm so sorry to hear about your husband being bedridden. That must be so awfully boring for him - 2.5 years is a long time :-(

Hugs to both of you XX

Anne G.

Hello Anne G. Sorry to hear of your husband's difficulties with his left side, does he still have the balance to walk around? It is so sad to see my husband fully alert, but unable to walk on weak legs and sometimes falling backwards. He has lost his nerve with walking, because if he crashes down there is no one here to lift him up and get him back into bed. It takes two people. The only real symptom of PSP he has are more Parkinsons. His body is stiff, his hands are stiff and fingers more rigid and he cannot grip well. He has no problems with speech, mental activity, no funny gaze, does not choke and can eat his food (although it has to be fed because he cannot grip a knife and fork) and he is washed and shaved etc. by our Carer. He has been this way for a long time and doesn't seem to have deteriorated further. It is hard to pinpoint where the Parkinsons stops and maybe PSP begins. Our Consultant who specialises is Parkinsons calls it Parkinsonism - goodness knows what that is? regards Janet.

Hi Janet: You have us all puzzled for sure! Not that any of us are physicians - as far as I know- but we do seem to want to "figure out" a diagnosis, comparing the reported symptoms to what our loved ones experience or what we've read.

My cbd hubby has little rigidity but much weakness and lack of coordination. He can Shuffle walk around the house at very slow speed, and due to ongoing physio (I believe) can get up from a sit to stand, so he can get himself to the bathroom (yay!) He has almost no fine motor skill - cannot type or text, cant move a page in a book, can barely use a spoon or fork, can only partially dress himself and needs help showering. He coughs constantly but can still swallow.

He has lost 90% of his speech and has increasing cognitive loss. He is still rational, has good memory but cant process things well or figure out problems. This all has depressed.him but he is helped by an anti-depressant.

That is what CBD looks like in his case. He is also declining more noticeably now (approx 5 yrs in.)

Did your husband have a lumbar puncture? It is so curious to me that he is bedridden yet doesnt seem to be declining. I sure hope you can push for a diagnosis...surely rhe Neuro must be curious and woyld want to get a second opinion? Is thete an advanced Neuro institute in London? I hear many UK members refer to a Prof Huiw Morris (sp?)

????? I sure hope you'll keep us posted Janet! Meanwhile a big ((HUG)) to you both.

Anne

,Hello Anne. My husband's case is surely very unusual and compared to your husband, it doesn't seem he has CBD, or unless it is yet to develop. He started getting strange sensations around 6 years ago. He progressed slowly to always feel ing unwell and then starting to fall, especially backwards - which I think is a sign of PSP so we have read. His walking became more and more difficult and he started to get the rigidity in the body, and lose grip in his hands. Alongside this has been the progressive arthritis and lumbar damage in the spine (which did show up on an x-ray but no treatment was suggestged). Then two and half years ago he took to his bed and hasn't moved since, only to go into care homes so that I can have a break (which he loathed) and also has just had a spell of a month in our local Hospice who gave him access to a Datscan x-ray in a London Hospital. The neurologist came to the conclusion that he has Parkinsonism, which could lead to PSP or muscle Palsy and that seems to be it. That was 2 months ago. Our neurologist lady is a parkinson's specialist at a large hospital, and would like to see him every 4-6 months, but I have told her it is a monumental job for me to get him there, and we would have to leave it. I can write or talk to her when I wish, she is very obliging. I have not really seen any change or deterioration in his condition in the last 9 months say, and dread it should it appear. The tablets he takes such as Dopamine, Anti-anxiety, pain and for other things he needs such as Vit D, and Folic Acid, seem to be working well, together with all his pain med. This seem to keep him ticking over and speech, memory, conversation, swallowing food, urinating etc. are all still working well. So I don't quite know what to make of it. I certainly have no help getting him out of bed for hospital visits, and he hates attending appointments because he is left hanging around too long in his wheelchair, with chronic pain in his back. So there we have it and our lives are very restricted as I am sure you know. Anyway, thank you for showing interest and I wish you and your husband well. Regards Janet

eppendorf

Vit D I don't know how long your husband has been taking vit. D but it takes a while to 'kick' in.

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