Good evening my name is Steve. I am 69, single & live alone. I’ve had certain symptoms for around 10 years now. I have very active in the sporting world all my life. In the past 10 years I have become very keen on golf & long walks.
Over the last few years I have had to use a golf cart as I could not walk for 18 holes.
I found I would sweat a lot & I would freeze on the greens putting & sometimes unable to swing my golf club.
I had found of late that I could not play more than twice a week & recently I have the feeling that I cannot play at all. I have an extreme body fatigue. My feet are also swollen & I have a weird numbness in my left leg. Walking is very difficult.
I was diagnosed with ATYPICAL PARKINSON’s following a DATscan, 3 months ago, that showed my brain was Dopamine deficient & confirmed my Neurologist’s original diagnosis. I have also had an MRI brain scan which was normal & rules out other brain issues.
The Neurologist told me that there is no cure or treatment for ATYPICAL PARKINSON’s but he suggested I try Madopar, but after 6 days I got a bad reaction to it & stopped. I am just about to try Ropinirole. Although the possible side effects don’t seem worth the risk for no benefit.
I have quite a few of the ATYPICAL PARKINSON’s symptoms but the only one that really bothers me is not being able to walk & the extreme fatigue I have.
I do wonder whether my main problems are not Parkinson’s but something else.
Hi Steve,
Welcome to our community forum. You’re bound to hear from our members soon with regards to their symptoms and their understanding of ‘atypical’ Parkinson’s, but we wanted you to know you can search the term on our website for articles, research, and loads of archived forum threads discussing it. Check out this basic info page as a start: Types of Parkinsonism | Parkinson's UK. We also have a staff of friendly advisors at our helpline, on 0808 800 0303, with access to resources of their own. This is a free and confidential service, so don’t hesitate to reach out.
We hope you’ll take advantage of these tools while you get to know our lovely community.
With our warmest welcome,
Jason
Forum Moderator
Good morning Jason & thank you for your reply. I have read a lot of online information about Atypical Parkinson’s & most of it is not really helpful. It seems every person is slightly different in how they are effected.
I did not have a good experience with my Neurologist. He told me that the results of the DATscan showed that I definitely had atypical Parkinson’s but they couldn’t treat me properly until the symptoms I had had got worse & he could have a better idea as to what form of Parkinson’s I had. I asked if there were any tests I could have to get
more of an idea as to which Parkinson’s I had. He told me there was a test & it was
called an autopsy.
The other thing he said was that I could try some Parkinson’s medication “but it wouldn’t do me any good”.
Not a great bedside manner, was it?
I did try Madopar but stopped due to a bad reaction. I am about to try Ropinirole.
No one seems to know whether it will do me any good at all.
5. Side effects
Like all medicines, ropinirole can cause side effects. However, many people have no side effects or only minor ones.
Common side effects
These common side effects of ropinirole happen in more than 1 in 100 people.
Keep taking the medicine, but talk to your doctor or pharmacist if these side effects bother you or do not go away:
dizziness when you get up from sitting or lying down
feeling tired and weak
stomach pain
heartburn
feeling sick or being sick
feeling anxious or nervous
uncontrollable twitching or twisting movements – this is more likely if you’ve been taking ropinirole for a long time or at a high dose.
Serious side effects
It is possible to have serious side effects with ropinirole. Some are rare and happen in less than 1 in 1,000 people, but others can be more common.
Tell your doctor or specialist nurse if:
you start binge eating, gambling or shopping uncontrollably or having an unusually high sex drive – these are signs of impulse control disorder
you feel unusually sleepy or suddenly fall asleep during the day
you see, feel or hear things that are not there (hallucinations) or feel confused – this is more likely to happen in older people
Hi, R was diagnosed with Parkinson’s but was told it could be Parkinson’s Plus. When I asked about it, the neurologist said it was a wait and see diagnosis - that the speed of symptoms and type of symptoms would show themselves in time. Again, not overly helpful but I guess it makes sense.
Hello R … In the letter I was sent it said I had Atypical Parkinson’s & then in brackets there was Parkinson’s Plus. I had thought they were the same diagnosis perhaps I am wrong.
My strangest symptom is that I can make myself a mug of tea at any time of the day & carry it across a white carpet & have never spilt a drop.
But in my golf club I cannot carry a coffee or plate of food bought at the bar to my table & have to get someone to carry it for me.
The last time I tried I completely froze & could not move & the coffee ended up on the floor after a minute of intense shaking before I was rescued.
I asked what atypical Parkinson’s was, always the same vague answer.
I don’t think they know.
I’m increasingly getting worse, can’t walk more than a few yards now, I shake uncontrollably now when I get stressed outside, sitting down I’m fine, a guy saw me having an episode in a car park, he said I shouldn’t be driving, that sort of thing is frequent occurrence
People don’t know how to react, I’m scared that I’ll do or say the wrong thing in that situation
Cammy
Do DVLA and your insurance company know about your issues if you are still driving? My concern would be that you might have an episode while driving. When I was first feeling agonised I lost my license until my neurologist could confuse rm that I was not a risk while driving. Parkinson’s disease and driving - GOV.UK.
I have just had the DVLA contact me to say that they will be granting me a
3 year Medical Driving License. I am 69 & did inform them that I had Atypical Parkinson’s as I had to. My life would be very difficult without a car.
A three year licence is par for the course until PD or APD advances. As you know, not declaring it to DVLA can lead to your car insurance being invalidated - even if your PD is not related to the accident!
Hi, my husband was diagnosed with Parkinson’s or Parkinson’s Plus nearly 2 years ago. We were told it is a wait and see diagnosis but looking at some of his symptoms (no rolling tremor, brisk reflexes, Babinski sign) it looks more like to be atypical. He has said that his voice is getting weaker and he is becoming more forgetful (but I don’t know whether that is because he is slammed at work). Because I suspect MSA, I have going the HealthUnlocked forum. Might be worth having a look as they have a lot more information on atypical Parkinson’s. Hope this helps, Rach
Hi RachRob … Thanks for the information. Atypical Parkinson’s seems to be a blanket diagnosis we are given when the experts do not have a clue what is wrong with us
& probably won’t have in the future. Unless symptoms get so bad that it becomes more obvious further down the line.
I had a perfect day last Wednesday. Then followed 4 pretty terrible days & today is certainly improved. I did have two difficult teeth removed & a flu jab last week, so you never know totally where to lay the blame do you?
Again I mostly lay the blame for how I feel to how I slept. If I don’t sleep well then I am very fatigued the next day & my walking & standing issues are so much worse.
