Recently diagnosed Parkinsons - possible Parkinsons Plus


#1

Hi, I have been recently diagnosed, while still waiting on a possible Parkinsons Plus diagnosis. According to my Neurologist I have it the last two years. I am on Sinnemet and Azilect but on last visit there has been no dramatic improvement of symptoms which are slowness, rigidity and fatigue and also footdrop. I have a splint on my leg and use a stick. I do feel a bit in limbo at the minute not knowing if I have Parkinsons Plus. Hoping that maybe someone has experience of a similar situation that might know how long it takes for a confirmation of same. I am in my mid fiftys. Thanking you .


#2

What’s Parkinsons Plus ??


#3

Just googled it as I have never come across it before. It sounds like you have been dealt a worse hand than a majority on this forum. Hope you get the answers your looking for.


#4

Hi ieddleston,
thanks for your reply. Am a newbie here so just finding my way around. :slight_smile: Actually not totally knowledgeable on the subject either. From what I understand I have all the Parkinsons symtoms with additional ones also. Apparently it can take some time for a definate diagnosis. Again you can read all sorts on Google and what I have read is that it is harder to treat.
Thought on this forum someone may have more information on the subject. In the meantime I try to carry on as best I can.


#5

Hi Carml,

Have you considered looking for a local group or getting involved in local activities? I wonder if you’d find someone who is going through the same thing. You may have done this already but thought it was worth mentioning. Parkinson’s is so unique to each individual, you really never know who you will meet.

Another way for you to connect with others could be to join our self-management programme. It’s a short course where people affected come together to talk about their journey and learn coping mechanisms and how to manage daily life. They have started running a couple of these online but there may be one local to you too. https://www.parkinsons.org.uk/information-and-support/self-management-programme

It must be really stressful to have to go through this back and forth about your diagnosis but it sounds like you’re approaching it in the best way, I wish you all the best for the future!


#6

parkinsons plus is a generic term covering msa (a bit worse than pd),psp (dudley moore), cbd(very much worse) and dlb( that american comedian,actor whtsisname) and anything else that isnt pd but looks like it. its a very misleading term.
msa is very hard to tell from pd for the first few years as is lbd. generally speaking it is when the non-parkinsons symptoms get worse (2 or more years) that the diagnosis becomes clearer. eg dementia or falling over backwards. (i saw this happen once in the main street of halifax-it was spectacular, like a tree being felled).
pd medications tend to be of limited help.
hope this helps.
regards


#7

Hi Carmi.

Dad has what they believe is Parkinson’s Plus. A generic diagnosis when you don’t fit the pattern exactly. His Parkinson’s-type symptoms were spotted in 2012 by a GP (slight rigidtiy in one arm and less expression on his face), but Dad refused to follow this up until I intervened in 2016 when he was catching his toes on uneven floors.

His symptoms are a mix ‘n’ match. He shuffles using small steps when he walks (with a stick), feels unsteady, drools occasionally, feels tired and emotional, and gets a bit muddled. Then again he’s 84 and very weary and fed up being frail when he was a lifelong athlete and sportsman. Potentially they now think he has a form of PSP (Dudley Moore had this) but then again he’s not displaying the typical symptoms of this. The truth is these neurological illnesses are so hard to identify accurately as they all offer similar sets of symptoms.

From many discussions with consultants, there’s no definitive path for the illness. It seems that any one sufferer can have a random selection of symptoms, and can progress at any rate.

One thing they do know - Dad’s previous level of fitness has been a golden investment. He’s still able to walk with a stick, albeit it slowly and sometimes unsteadily, but his legs are very strong which all helps his balance, and he had excess ‘fitness to lose’ Due to a lifetime of sports, he’s fairly resilient to tumbles too. Each night we now use an ‘exercise bike’ which is really two motorised pedals which cycle his feet around while he’s watching TV. He has daily multivitamins (soluble from Boots), and some research has shown benefits of cinnamon (the Ceylon type is safe) so half a teaspoon goes into his porridge each day. Plus blueberries too. There’s an awful lot of self-help you can do but general fitness regime seems to work for Dad.

Perosnally my one tip would be - muscle-up!!

Best of luck. And question everything along the way until you’re happy with the answers.
x


#8

Great advice I agree from the heart❤


#9

Hi all, particularly to those who responded to my post some time ago & whom I havent yet quite acknowledged. I would like to thank you sincerely for your contribution of
re assurance and your invaluable information and apologise for the time it has taken me to respond. I was going through some tough times trying to come to terms
with everything. I still await whether I have parkinsons plus or not, as Im told it is a bit early to say yet. I have since become pro active with medically supervised exercise which, if nothing else keeps me sane and gets me out of the house. It is hard to accept that I cannot just get up and go out as I used to do without even thinking. I realy have to plan my day as best I can but in
time I will adapt to coincide with how I am feeling at that
particular time. Hopefully the medication of which requip has now been added to Sinemet and Azilect will do their
job. From what I am hearing, exercise is as important as the drugs. Onwards and upwards! The Forum is invaluable to a source of information and support so thank you to whom it may concern!