My wife was diagnosed with PSP late 2021.She broke her hip in early February whilst taking part in a PD Warriors exercise class. She has been transferred to a Rehab Hospital. Progress has been slow but positive with he walking with a U Step and practicing on the stairs on Friday. I was called to the hospital this morning due to a change in her condition.
She had some tremors overnight but had breakfast and walked to the toilet. Following that things got worse hence the call to me.
Currently this has continously severe whole body tremors. She fully knows what's happening and is very distressed that she cannot stop shaking.
Have others experienced this any thoughts on easing or improving anything.
She is currently on a low dose of Sinemet and it was planned to come off this and go o to Amatadine but this has been delayed due to hospitalisation.
My two issues are the tremors a d the distress.
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Wombatz
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I’m really sorry to hear your wife suffered such a major break at an exercise class. What a shock for you both. My husband has had a whole body tremor twice in the last few months that I am aware of. It was distressing to watch but once it stopped he seemed to revert to his normal PSP self, not sure what caused it or why. He often has small tremors when asleep in the night .. I have a little school bell on his bed that he can ring to get my attention. I sleep in a single bed near him but don’t always wake and he can’t call out. The bell often tickles even when my husband is asleep so I know something on his body is tremoring. He doesn’t take any medicines so it’s not Sinemet. I hope you find out why she is having uncontrollable tremors or it passes.
O gosh .. no his tremor latest about 10 minutes which was upsetting enough and I did ring the out of hours district nurses for advice but by the time they phoned back he was still again. What have the doctors said about your wife? It must be very frightening to watch. Please keep us updated
The rehab nurses have been talking the the duty Registrar. We have all agreed she will be transferred to main hospital Neuro tomorrow. She can hold a conversation and said she would like to stay where she is. Her distress is she cannot stop the shaking. Medication is keeping her relaxed a bit and they will give more tonight.
Tomorrow her PSP Clinic and Consultant can be informed and hopefully get involved.
Muscle cramps, spasms and stiffness on PSP patients:
We not detected major episodes of tooth decay, muscle cramps or spams.
A low level of calcium or the correct level of electrolytes in the blood can cause tremors. To avoid, in our case, we take two additional measures in the diet:
1) In the daily diet we include in the breakfast a quantity of fresh cheese combining with a little citrus fruits (orange, lemon, strawberries, etc.) and in the meals egg yolk or fatty fish. And just as important as the incorporation of these kind of foods, whenever the circumstances arise we expose the patient to the sun discovering legs and arms. The idea is to favor the presence of Calcium in the diet as well as favor the generation of vitamin D.
2) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.
3) We base the meal programming on the Mediterranean diet, favoring the presence of fruit, vegetables and legumes without forgetting the presence of meat as a source of vitamin B12.
Her diet has changed due to her being in hospital.
After severe tremors all day yesterday she awoke this morning with none. I am waiting for the doctors to call me but I understand they are doing some blood tests to check on some levels.
Hi WombatzMy husband who has PSP often gets these bouts of shaking they last 48 hours almost to the minute and then he's exhausted for the next few days . There's no rhyme nor reason. We have thought that it was the medication so came off all Parkinsons medication levodopa. We've thought that it was a water infection so he's had antibiotics. With or without antibiotics it's always 48 hours. My husband is always upset when it happens but I try to put positive spin saying well we know that it will only last 48 hours. Good luck. Sending positive thoughts and prayers that they stop for you soon. X
Many thanks this has helped at least we know we are not alone. My wife's bout lasted nearly 24 hrs and she is also very fatigued today.As she is in hospital they have done blood tests if any light is raised I will post the results. X
He was diagnosed in October 2021, after investigation for Parkinsons but then falling backwards down the stairs and cutting his head open and breaking his clavicle. He's now 71 years old. Walks with a walker and his speech has become much quieter. I have difficulty in hearing him as my hearing has very slightly deteriorated, so I am now going to have hearing aids. I hope that helps. Which area of the country are you in?
My wife was diagnosed in December 2021 after a series of falls backwards early in the year. She has been walking holding my upper arm outside and handrails indoors until the beginning of this year when she started using U Step walker indoors. Her speech is strong but she has been practicing LSVT loud since diagnosis.We live in Hampshire and she is treated in the Atypical Parkinsonism Clinic in Southampton under Consultant Boyd Gosh. We attend the PSPA Hampshire Support Group.
You are so lucky to be under Boyd Gosh. I wish every area had a consultant like him. We just attend the Parkinsons clinic every 6 months and see the Nurse there. I've only just heard of LSVT loud and I try to get my husband to do it from YouTube. Is therea better site? . He goes to a gym every week with a Personal Trainer, then has a physio technician who comes to the house and does balance exercises for half an hour( all he can manage) and then another PT who has a masters in sports science and special qualifications in Parkinsons who comes once a week for an hour and tailors everything to how he is on the day, he is so variable. We also have a stairlift since October and it's been wonderful for us, no worrying as he goes upstairs. Good luck on your journey . It's interesting to hear from someone who was diagnosed at about the same time . Take care
You may be interested to know that the PSP Association in the UK is launching free zoom exercise classes with a neuro physio from April 2024. Exercise for seated and non seated sufferers.
Thank you. That would be wonderful. I do zoom exercise classes with the Breast Care centre after a lumpectomy a few years ago. They've been fantastic. X
I spoke about these tremors my husband has on the PSP carers meeting earlier this evening. In reply to your question. In my opinion there is no rhyme or reason to these episodes. I do notice that although my husband has virtually no voice at all. He goes extra quiet and is extremely fatigued a couple of days beforehand. Sadly his episodes can last anything from 48 hours to the longest being six days constantly. From head to foot including his eyes. It is heartbreakingly scary to see. Knowing there is nothing you can do. My husband was eventually diagnosed with psp in November 2021.
I wonder if this is a result of the trauma she has had after her fall; my wife has unresponsive episodes after experiencing trauma, you can read about her and others here
Many thanks for sending some enlightening information . There is a lot of evidence that shaking and tremors happen a lot to our loved ones. Also that in some cases they can last for at least a day like my wife's and longer.Just been informed that blood test results were all clear so down to dear old PSP once more. Whether it's linked to the trauma of the broken hip this is another one up for debate.
The issue it raises for when will happen again and will I get any warning. We will learn in the future I guess.
Hi WombatzThank you for letting us know that the blood tests were all good and I'm glad that the shaking has stopped. The only thing I've noticed that my husband has complained of before the shaking starts is a pain in his neck, I've assumed it's muscle spasm and rub Volterol on.
If it happens again keep telling your wife it will only be 24 hours. We have to say little white lies with authority on times. It gives hope.
Hi JenFunnily I have already told her it happens again I know it's horrible but you now know it will stop.
As you said she was still very weak yesterday having trouble walking even with her U Step and a Hospital Carer behind her. The physio has stopped working with her until she gets stronger but I would like to get home.
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