My husbands been really ill for a good few weeks now, his medication isn’t working and when it does he only gets half an hour out of it, it also concerns me that some days he can be taking up to 10 tablets and last night he couldn’t feel his legs all night. also the last week he’s been struggling to walk too.
we’ve been trying to get an emergency appointment with the neurologist for the past 3 weeks and can’t even get a call back, so had to go to the doctors yesterday just so they can chase it up for us.
I really don’t know what they are going to do for us next, I think he’s tried every medication going and it never seems to work for him.
Has anyone ever had anything similar happen to them?
Thank you Emma x
17 Replies
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Diagnosed
2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Sorry for both of you. In France, they would try an apomorphin pump. It delivers a constant steady, amount of L-Dopa. A distant acquaintance, suffering advanced stage of PD, told his relatives that it "gave him his life back".
I am wondering whether Parkinson's is the correct diagnosis. We have all manner of symptoms, but this the first time I have heard of of someone with PD being unable to feel his legs. Usually we can feel them just fine, but they feel too tight or tremulous or painful. I take it he has tried or is using various levodopa preparations. What are symptoms other than not feeling his legs?
Emma, I am sorry to hear about your husband. You have done the right thing contacting your consultant and your GP - keep pressing for an appointment. If you're not getting a response from them, call the Parkinson's UK help line. They have a Parkinson's specialist nurse you can talk to. Failing that, perhaps you could give details of your husband's drug regimen: the time of each dose, the drug involved, the dose. How old is he? How long is it since he was diagnosed?How long is it since he was doing OK? Are his symptoms linked to what he eats and when he eats? Does he have any other illnesses? Is he constipated? Does he suffer from low blood pressure? As first aid I'd get him to drink a pint (c. 500ml) of water.
I believe that the question is ambiguous enough and the condition of the husband as described is serious enough to warrant immediate, urgent emergency room attention. It could be as simple as a bowel blockage due to constipation that is preventing medication absorption. That could turn deadly if ignored. We should all be encouraging Emma to take her husband to the hospital emergency room immediately.
Hi Emma. I agree with park_bear who has commented before me. I doubt if this is Parkinson’s. No matter what stage the patient is in, there is always some response to Levodopa. I am assuming that he is getting Sinemet/Madopar or something similar.
Otherwise, you should go directly to emergency at the hospital and get him examined. It could potentially be a very serious problem that can be resolved if you attend to it immediately. Otherwise, you will regret not taking prompt action.
We get the diagnosis of ParkinSONISM and hear ParkinSONS. The "sonism" means to give the Neuro and the patient more time to see how he/she responds to the sinemet and to allow other symptoms to appear.
There are many brain diseases.....
I think he needs to be constantly watched for other symptoms. I suggest watching on YouTube the video of Jim Bower of the Mayo clinic (July 20, 2018) MAKING A DIAGNOSIS OF PSP, CBD, OR MSA.
Among MANY brain diseases are PRIME OF LIFE BRAIN DISEASES (PSP, CBD, MSA, FTD, ALS, CTE).
I hope you get some answers from his neuro.........
Hi Emup. I really feel sorry for you both. The truth is that THERE IS NO MEDICATION THAT DOES ANYTHING TO SLOW DOWN THE PROGRESSION OF PD!!!
That means that whether you take medication or not, the Pd continues to get worse until you are unable to move.
There is only one known way to reverse the symptoms of Pd and that is FAST WALKING
That does not help if the patient is already unable to move.
That is the big REALITY OF THE SITUATION!
If your husband, after he has stopped taking the useless medication, is able to move at all, he should start to do the fast walking, even though he may think he can't.
View my website - reverseparkinsons.net and contact me. Maybe miracles do still happen!
Emma. I sure hope your husband feels better soon. I agree with some of the other members, take him to the emergency room. Granted most of the people in ER don't know about PD but, maybe it is something else.
You could get an appointment with another Neurologist, a second opinion would probably be a good idea. If his symptoms get worse and it's distressing, go the the Emergency Room, at least they will directly contact your Neuro and be seen faster. Your husband may be on too much medicine.
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Where are the husband carers?
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