What is the difference between these two? My husband's appointment with the movement disorder clinic was this week, until they cancelled it, and the next available is in May.
Also, in my reading on this forum I've not seen much about this, but is loss of overall strength a symptom of PD? He is really surprised at how much weaker he is.
Thanks, also, to all of you for your contributions. It is so helpful to be a part of this support group!
Parkinsonism is diagnosed when a certain number of Pd symptoms are present but not enough to indicate that it is full Pd.
If you contact me on my website, which costs you nothing, I will send you lots of information on symptoms and ways to deal with them. Look at reverseparkinsons.net and get my email address. I will respond immediately.
Thank you, John, for your link. Am continuing to learn how to use computer technology, and subsequently saw that I can search on here for words/topics.
Parkinsonism is the occurrence of Parkinson's symptoms for reasons other than Parkinson's disease. Typically due to a toxic exposure. May be reversible or not depending on the details.
Parkinson's is a specific brain disease, idiopathic. Alpha-Synuclein produced in the neurons. Usually this diagnosis comes after enough time has passed to see the symptoms. It usually responds to dopamine.
ParkinsonISM is a group of symptoms of brain disease that are AT FIRST usually present with most brain diseases, but not enough time has gone by to give a true diagnosis. PRIME OF LIFE BRAIN DISEASES (PSP, CBD, MSA, FTD, ALS, CTE) can only be determined with time. They usually don't respond to dopamine. Tau is produced.
Prime of Life Brain diseases are NOT a progression of Parkinson's, but because the beginning symptoms are shared with other brain diseases such as Parkinson's they are often misunderstood by the layman as a progression of PD.
You might want to watch on YouTube Jim Bower from the Mayo clinic explaining why it takes a longer time to DX Prime of Life brain diseases.
Those that are first DX will be DX with ParkinsonISM but hear Parkinson's.
Thank you for taking time to reply. I'll be interested to watch the video you mentioned.
Hi my husband was diagnosed with Parkinson's,then they said parkinsonism type symptoms. It's that he wasn't showing atypical symptoms of Parkinson's. They'll possibly do more tests . Hope all goes well x
Thanks for your reply. Was he diagnosed recently? Did they do any scans/tests, or just history, etc?
Hi he was dx with msa,"multiple systems atrophy"and a year after the Parkinson's diagnosis he was admitted with aspiration pneumonia, the neurologist thought she had to reconsider that diagnosis. He then had an Emg, and was then diagnosed with mnd and Parkinson's . But obviously that isn't always the case,I hope it isn't for you xx
I've been wondering about MSA. My husband's overall strength has declined considerably. I tried to post a question on this forum about this, but haven't seen it. I'm still learning how to navigate this. I've not seen loss of strength on any of the lists for PD symptoms I've read, I don't think. I'm not quite sure how to research this further.
Here’s wishing you well,whatever dx your husband gets. It can be very confusing. My husband was dx with Parkinson’s for 8 yrs but all along the neuro said it did not seem typical Parkinson’s. Then symptoms developed that indicated PSP rather than Parkinson’s. Unfortunately there are no tests they can run to determine but only can go by symptoms.
Each day may bring new concerns and my best advice is to take one day at a time and do all the things you both want to do while you can.❤️
Yes, I was just reading somewhere that it can take up to 6 years to get definitive diagnosis. Thank you so much for giving us advice!!
My husband has the same diagnosis after having a DatScan. First appointment we could get with a movement specialist is in July. I don’t have a lot of confidence in the neurologist we’ve been seeing for last 2 years as she wasn’t listening to me when I repeatedly told her about voice and gait changes. My DH has lost a lot of strength and has balance issues. Have been working with exercise to try to maintain what we can but not seeing a lot of results. I would very much like to hear what you learn from your appointment in May.
Thanks for your reply. I'll try to keep you posted in May, however, I dont know whether I'll have good access to internet for the next 5 months. We are going to move this weekend to a rental for up to 5 months. Perhaps I'll try to make it a point to go to my husband's office to touch base after the appointment.
We went to first neuro appt in May and saw second doc in June, I think. Both just said PD or Parkinsonism, dont know which. Second doc said sounds sort of like MSA, but not exactly; he has no interest in seeing us again since my husband does not want to take meds now. The thing so far that has seemed to make the most difference is CBD oil (with no THC). Blessings to you both.
Hi Redginger, my husband has been attending the Movement Disorder Clinic in Melbourne (Australia) for a number of years, which has overall been very successful. We have however resorted to going to see one of the neurologists privately from time to time. The reason we liked the clinic was that the doctors discussed your case and often came up with something to try . This happened with my husband . He was initially diagnosed with Lewy Body dementia, but after being put on a Rotigotine patch (Neupro), the diagnosis was changed to Parkinsons.That drug was, for him, amazing. He went from lying on the bed mostly facing the wall (being diagnosed with depression before the Lewy Body diagnosis) to being his old self again. After a long period on Neupro, he is no longer responding very much and his meds are about to change. I will try the B1, but I'm not going to muddy the waters till we see what upping his Neupro does.
The clinic has its advantages and disadvantages. If you can't see someone privately, would jumping up and down, telling them you can't wait till May, help. Tell them your husband is very unwell. (Sound upset, not angry).
Regards Gwendoline
Thank you for your reply. There really is no other place to go around here because his doctor has referred him to that clinic and it is the only place that I know of where we could see a doc who specializes in movement disorders, which is what I understand that he needs to do. I dont think it would be much help to go to just any neurologist, but you've encouraged me to call tomorrow and see if they can FIND a spot for him sooner.
RedGinger, good luck with it all. The neurologists we saw privately were the same ones that were at the Movement Disorder Clinic. There is never any guarantee who you see there. but they all specialise in Movement Disorders. (Sometimes it’s one of the top Parkinson’s neurologists, last time it was someone who’d only been there a week, although overseen by a senior neurologist).
That’s why we’ve resorted to going private (at a cost of course), whereas there’s no cost attached to Movement Disorder Clinic. I certainly wouldn’t go to ANY neurologist. These guys are very respected in their specialty.
The neurologist has told us that if upping Alans medication doesn’t work, he is trialing a new drug (each neurologist can trial it on 10 patients.
We are in the USA and it works a little differently here. I dont think it is even possible to see one of them privately. Thanks for your ideas.
We are so lucky here. Our health system is fantastic. Everyone is taken care of. Good luck, Gwendoline
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