Help


#1

Around 7-8yrs ago when I was 48, I lost my sense of smell. It is difficult to be precise, as it is one of those things that happens gradually. Probably a year or so later my wife noticed my hand was shaking when my arm rested on the table at meal times. As her Nan had Parkinsons she assumed it was, as did I. Went to the doctor who said it was Benign Essential Tremor , quite common apparently. So that was that.
In the interim, and probably unrelated I developed a stammer, initially just on the telephone, but in the last few years, when speaking to all people.
The other thing she noted was that the default position for my left arm was bent, I just assumed it was because I used a clipboard everyday
At the start of this year things have started to change with my body.
My left side, arm, wrist and hand work much more slowly, particularly noticeable when trying to put on my safety belt in the car. My voice has changed, it is weaker and croakier particularly at the end of the day. I have to force myself to speak louder and all this becomes a challenge with my stammer. Also I have problems getting words out, particularly in conversation; I am thinking what to say but can’t start speaking.
As regards mental issues my brain seems to work more slowly and at times I feel I have to repeat jobs to check I have got them right.
I have been agonising for while now over what to do next. Getting a diagnosis is a big step as it has the potential to be life changing with the collateral effects on my wife, family, work life and such things as driving are massive.
I would appreciate some feedback as it has been spinning about in my head for some time and I still can’t decide if it is better to know or live in denial until the symptoms become more severe.


#2

Hi Rolleston,
Welcome to the forum and thanks for your comment.
Our members are sure to reply soon sharing their advice and experiences. If not, a Parkinson’s UK moderation team member will get back to you as soon as they can. Please also feel free to contact our Helpline on 0808 800 0303 to talk to one of our advisers if you need urgent advice.

Best wishes,
Edwina
Moderation Team


#3

Hi Rollerston.
Apart from the loss of smell and the side of the body your symptoms are very similar to mine…
Your clipboard arm is interesting because I thought I was the only one who had that,
Add on frequent weeing,insomnia,wet/dry mouth,small writing,limping,weight gain with a few more besides and you get the picture.
You can’t hide from it.
You can fight it.
Don’t delay!
Hubby


#4

Hi Hubby thanks for the reply. Are you on any medication


#5

Hi Rolleston

I would definitely try to get a diagnosis because it will mean you then have access to the help and support you need. I have quite similar symptoms with tremor in my left leg and arm and difficulty doing things on the LHS. Having a diagnosis made it easier for me to understand why this was and also gave me access to the local Parkinson’s nurse who was really helpful. This also gives me someone I can contact if I need advice or help with something.

Clare


#6

Thank you for your support, it’s a scary first step. You have good health all your life then suddenly it all changes

William


#7

Hi Rolleston,
I too was told I had essential tremor, partly because mine is a “resting” tremor. Like you I suspected PD from the start. I do think it’s worth asking for a second opinion. You and your wife clearly know a fair bit about PD.
A PD diagnosis while not pleasant isn’t the end of the world. There’s a lot of help and friendship out there. And once I got over the initial shock I found myself thinking a lot of things suddenly made sense. And now at least I know what I’m fighting.
You may find that family and work colleagues have already put 2 and 2 together and wondered about PD. My son and daughter both had (independently of each other!). Although my lovely husband was quietly convinced I was anemic, PD had never crossed his mind!
Yes DVLA do need notifying after a diagnosis, but I am still driving although I now have my licence reviewed every 3 years but that’s no problem. Insurance was no problem either although they too need to be notified.
About work, I was self employed (now retirement age), so I’m not sure if I’m right here but I think employers have certain obligations and cannot discriminate against people with conditions like PD etc.
PD medication works for me. I am on low doses of sinemet. It’s not a cure. How I feel can can sometimes vary daily and sometimes throughout the day but it’s copable with. Life is not quite the same - but it’s still pretty good. I have some down days (doesn’t everyone?) but I try to remind myself there’s worse things to have and none of us know what’s around the corner. Sometimes it works sometimes it doesn’t.
I’m sure you know the main thing is to keep as active as you can doing things you enjoy.
But a diagnosis it the first step then you can access any support you need. Very best wishes to you and your wife. Daffy


#8

Thank you ever so much for your support, It is greatly appreciated. I have spent a long time worrying about it and it is good to find kindred spirits.
I too am self employed with 11yrs till I can retire so PK is a spanner in the works which I am trying to deal with.

William


#9

Worry is very wearing isn’t it. Everyone tells you not to get stressed, which is a hell of a lot easier said than done.
But once you’re diagnosed people are usually very supportive and. those that aren’t aren’t worth bothering with. Ruth


#10

I guess I had better bite the bullet and book docs appt although it will probably be weeks ahead.

Wish me luck

William


#11

Hello Rolleston
My husband had symptoms for several years and was finally diagnosed in February this year aged 52.
We were both convinced it was PD but were told several times that it wasn’t.
Anyway, even though we knew deep down what it was, we found the diagnosis traumatic and are still coming to terms with it. However, we’re really pleased that we pushed for further investigations and a diagnosis as he was put on Sinemet immediately and he has had big improvements in his symptoms.
He had his driving licence changed to the 3 year medical licence which he took very badly but has now accepted this. His driving is still very good and the insurance premium didn’t increase.
Whatever the down side of being diagnosed is insignificant (in my opinion) when you think of the improvement of symptoms you can get by taking the meds.
His handwriting returned to normal and the tremor has practically gone (it returns a little when he’s stressed).
He’s now exercising regularly with a wonderful Personal Trainer (who specialises in PD) and is starting to regain some of his muscle / strengh / posture.
He has the same issue as you with his arm but he’s working on that too and he can now swing his arm a little better.
Good luck


#12

Hi Rolleston.
I am on Azilect,Sinemet and Mirapexin.
I’m not sure how much good they are doing me but I have piled on the pounds since I’ve been given them.
Hubby


#13

Morning Rolleston

Well it’s so hard to keep going, I Am On a lot of meds but unlike Hubby I am the Opsite my weigh has down and my doctor is getting worried too. I take these needs and here are there names.

            - atorvastatin 20 mg
            - stexerol -d31,000  
               Unit - 
            - co - codamol 30mg/.      
               500mg
            - Ropinirole 4mg morning 
            - Ropinirole 6 mg night
            - sinemet plus 25
            - lansoprazole 15 mg
            - Docusate 100mg 
            - mirabegron 50mgb stopped 
            - fibuer drinks 
            - Lactulose 30 MLS
            - Pregabalin 50 mg.x4 
            _ Ferrous fumarate 210 x3 a day

My husband and I call my self a walking talking tic-tac,

You take care
Raz


#14

Thank you for the list, you certainly must rattle a bit. I assume that some are to counteract side effects of some of the drugs. Rolleston


#15

Thank you for you supportive reply everyone has been so kind.on the forum. Just have to get my head around it and see a doctor. William


#16

Morning rolleston

Oh yes I am the walking talking tic tax, yes you can see my list is big but I do also have others which I have not put on just yet, so many tablets and fod
God knows those side effects are so many too, but one thing I can say if I mosss my PD medcoans I have noticed things like increased drooling, confusion , lose of balance. I also have my kids which I can’t afford to be like that around so with out thinking about the side effects I just take them all. I hope you sort your medicine out and find a way that you can control your side effects. Have a nice day

Kind regards
Raz


#17

Hi Rollaston,
My wife has had P for about 12yrs.
I would agree with most of what has been said already. You should be referred to a neurologist for a definitive diagnosis and he/ she will determine the medication required. My wife still has a driving licence but on a 3 yr renewable basis. I wish you all the best
Only you though can decide on what is the best course of action for you.
All the best,
Mike


#18

Thank you for your support

William