My mum is 74 and was only diagnosed with Parkinson’s in 2015.
At that time she was fully active and had just been on a cruise when her balance started to be slightly affected.
She was on levadopa for 2 years but it has no effect and it was stopped in 2017.
Mum has never had any tremors.
She is now completely immobile, has sever rigidity, has sever speech problems and in the last two weeks has problems swallowing.
She is slumped on her left hand side but CT scans show there has been no stoke.
She has been admitted to hospital as docs are concerned that she is at risk of choking and have put her on a purée diet with the probability of moving to tube feeding.
We struggle to get any advice and guidance, has anybody else experienced this fast progression with Parkinson’s ?
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Jeas72
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What benefit will we see if your mother is started on high dose thiamine HCL ?
I agree, try B1 injections. It cannot hurt and might just be the miracle she needs. You need to learn about Dr Costantini's procol first so that you are informed. From memory when my husband was first diagnosed, the specialist said that confirmation of the diagnose was if he responded to Sinemet, which he did. If your mother did not respond favorably, does that mean she does not have Parkinsons? Maybe she has another neurological condition, but either way I also suggest you try B1. Good luck, it must be terrifying for you both.
Many thanks Nellie58 i think mum would be happy to try the B1 injections if they could help.
MSA was suggested about 12 months ago by a Parkinson’s nurse but then dismissed by the neurologist who said that the Brain scab didn’t suggest MSA and said it is vascular Parkinson’s.
However the speed In which her condition has progressed makes me question the diagnosis as I can’t find any information that says fascism PD progresses quickly.
I just wrote to Dr. Costantini this week to ask about MSA and HDT. MSA can be very rapid in progression so anything that can potentially help should be started as soon as possible, if it actually is MSA. In the following link you Will find Dr. Costatntini's answer to my question as Q&A #56 :
Vascular Parkinson's is not identical to Parkinson's Disease, in it's etiology and course, and treatment. Former President HRW Bush had Vascular Parkinson's. Sorry to hear about your Mum's rapid progression. So, a correct diagnosis, by a movement disorders specialist, would probably be helpful, if you haven't already pursued that. Wishing you the best, and hope you can get some help for your Mum.
Just so you know, there are several types of Parkinson's-per say. There is Parkinson's Disease, Parkinson's Plus diseases ( such as PSP {pseudobulbar palsy}, MSA {Multiple System Atrophy}, and several rare others. Also, there are diagnoses of Parkinsonism-which is where the symptoms resemble Parkinson's Disease, but are not actually Parkinson's Disease. In this case, it was stated that her Mum was told it was Vascular Parkinson's. This could mean Vascular Parkinsonism, which did not respond to levodopa treatment, so it would not progress like PD, the disease. That would probably explain the rapid progression. You may know all this information, so forgive me, if I've offended you, in any way. That was not my intention.
ddmagee1 no not offended at all, thank you for taking the time to post I am grateful to receive any information which may help provide a better understanding and clear diagnosis.
my son was DX with Parkinson's, NOT Parkinsonism (there is a difference). Three years later the DX was changed to PSP.
Usually, at first the DX is Parkinsonism, until a few years have passed and given enough time for more symptoms to appear.
About a month ago Iqbaliqbal posted on the difference between PD and PSP. If you can't find the post I would suggest you Google PSP, and also have a different nuerologoist
The only way that Parkinson's is confirmed is if the PD medication works . Two years on Levadopa with no improvement is outrages . Get a new Neurologist immediately, your MD should help you find one. There are several diseases in a group referred to as "Parkinson's plus " or "Atypical Parkinson's" both mean Not Parkinson's.
Progressive Supernuclear Palsy
Dementia with Lewey bodies
Multiple System Atrophy
another that I can not remember that is very rare
All are Chronic, and the rate of unset different for each person but all much faster than PD. Medication is limited and peculiar to the specific identification.
I suggest you look for a nursing home immediately. A regular retirement home or your home will not be satisfactory. My experience with two friends with PSP : You can not do this by yourself , get help.
There is a Community here at HEALTH UNLOCKED for these diseases where you can talk to others that have the diseases but of course you are always welcome here.
hi jeas well i must say it dont sound like pd if she was on it for 2 years it should have made a big differents to your mom sounds like someone made a wrong call.after 3 months it should have made a differents to your mom. get her into an hospital right away as shes in big trouble.sorry for your mom.regards.
Sorry to hear this about your Mum. This must be most disconcerting for you and her both. My Dad had Vascular Parkinsonism, which directly resulted from stroke. He never had tremors, but severe rigidity, and rapid progression. With your Mum, they must not have figured out, the doctor's, as to exactly what type of Parkinson's she had, in the beginning. That is fairly normal. Having no tremors, and then no response to carbo/levodopa, was a red flag, for sure, that your Mum's diagnosis was not just idiopathic Parkinson's Disease. Her lack of tremors, and severe rigidity are classic for Vascular Parkinsonism, from what I understand. However, you said there was no sign of stroke. I would be sure to get a clearer diagnosis for your Mum, directly from her Neurologist/Neurosurgeon. That would clear up any misinformation or doubts, because they have the professional expertise and tools to measure ailments with, that could profit your Mum the best. I am no expert, I can only tell you what I've experienced with my Dad. Oh, and by the way, I have been diagnosed with Parkinson's Disease, and am on Carbo/Levodopa, which greatly helps the rigidity I had, and I had resting tremors, also. So, my Parkinson's Disease diagnosis was not at all, like my Dad's. His was, as I said, a result of stroke- Vascular Parkinsonism. My hope is that you will get this straightened out soon, and, perhaps, get some help for your Mum's swallowing problems. Keep us informed, if you have time! Thanks again for sharing! Wishing only the best for your Mum.
ddmagee1 many thanks for your post and sharing your experience with your dad and your own PD. I am sorry to hear your dad also experienced the rapid progression with vascular Parkinson’s. Mum is currently on a stoke ward in hospital but they are saying no stoke is showing on the CT scan so now we are waiting for MRI to see if that gives any further information.
Do not try any Medicine or anything suggested here on your mom. Get her to a good doctor and find out what is wrong with her. Only then you can make informed decisions.
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I agree with others above that the PD dx is wrong or at least incomplete. My husband was dx with PD for 7 yrs then was dx with PSP. His symptoms were the same as you describe with your mother. The sad thing is that many in the medical field know little or nothing about it. A good neurologist,(if you can,find one who is a movement disorder specialist) should be able to pinpoint it. Blessings to you!
Many thanks JantheNana for sharing. I agree it is very difficult trying to get a good Neurologist who have a wider knowledge outside of the typical PD, the one we have is a specialist in strokes not PD. Kindest regards.
What your mother is going through seems almost identical to what my husband has been going through for the past 2 and a half years. He has been diagnosed with CBD. His is a fast moving disease that has resulted in the inability to drink fluids. He's on a peg tube for fluids now and eating pureed foods. Bared barely even able to speak . he just had a bout of aspiration pneumonia which weakened him quite a bit. He takes a lot of meds. His doctor states t the course of his disease lasts 4 to 6 years. Everyone is different but his seems to be fast. It is a devastating disease. I'm so sorry your mother is ill. Bless your family.
Thank you for posting Kathy I am sorry to hear your husband has been going through the same symptoms. I have not heard of CBD so you have any more information?
Cortical basal degeneration is related to Parkinson's disease. No one knows why people get it. It is a rare disease. Apparently a Tau protein accumulates on nerve endings and chokes them causing cell damage. It usually starts with one sided issues which leads people to think t they had a stroke. But the condition continues to worsen and spreads to the other side. Muscles are strong but coordination is bad. Lots of falling. No balance. Difficulty with fine motor skills. Totally oriented. No dementia. Difficulty speaking, swallowing, needs help with all activities. Chokes on food and fluids. My husband has silent aspiration. I cant even tell he's aspirating. He doesn't choke when it happens. It just dumps into his lungs. He doesn't start coughing until it is already in his lungs. Eventually he won't be able to move or speak. But he will be completely aware. They tell me the cause of death is secondary infection. Like pneumonia. No cure. Nothing slows it down. Just takes meds to keep him more comfortable. I hate this disease. I don't know if this helps you at all. Sorry about all my complaining.
Kathy your certainly not complaining it’s a lot for you and your husband. Many thanks for sharing the information on CBD a lot of this certainly fits my mums symptoms. It seems there are so many variations to original Dx of Parkinson’s I am certainly going to discuss these with the neurologist .
I am very sorry to hear what your husband is going through, it must be very tough for you both. Stay strong.
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