Progression


#1
Hello again everyone.

I wrote on here last month when my darling Dad was dx with PD. My shock was absolute and I spent around a week in constant tears. However, after a week I got a grip so to speak, was grateful it wasnt worse, grateful that he was so positive and put it to the back of my mind.

Since then, I have spoken to my Dad on the phone every day (Which he loves)as do I. Its so easy to get carried away in the trivial but day to day life of which you are part. This diagnosis has bought me back to reality and reminded me what life is all about. I live 200 miles away from my Dad and would move next door today if I could. Unfortunately it is impossible......

Advice wanted please :

Recently, my Dad has started loosing his positivity. Saying he does not want to be a drooling helpless old man. (He is in his 60's. I dont think he is becoming depressed. I am rather an expert in that area myself. And the shock, tears and upset is all back. For me. he also seems to be forgetting things. I feel this is noticable when in a telephone call. Is this usual?

He says that is shaking is getting worse. In the space of a month! Is this usual? Hes not taking meds at the moment as his neurologist said there was no need.

Im scared..............I sat in my car for an hour last night and sobbed (I have young kids). Is my wonderful, strong amazing Father going to loose his mind and end up as a dribbling old man????

#2
you dont say if your dad lives on his own, I have parents who live a distance away and can only see then once a month. but i to phone every night, and try to make my visits when one of them goes to hospital appointments, this way I know the doctors are getting a true account of their conditions, I soon notice if I forget to take my medication as I get muddled headed. so could it be that dad needs medication? I hope this helps a little.

#3
Hi thank you for your reply. No he doesn't live on his own. He has a great support network around him thankfully. x

#4
Hi I am also in my 60's and have been diagnosed with PD for 18 months,I resisted taking medication until 3 months ago when I was put on Co-Careldopa which since starting I have never looked back,my main symptom was a tremor in my right arm/hand although it has not stooped it completely It has improved by a good 50% I am well pleased.

#5
Thanks Silverspoon. That is all he has at the moment, a tremor in his right hand. He says it has got progressively worse in the last month. Is this speed of progression normal do you know?

#6
Hi,I got progressively worse over 12 months that's why I started on medication and touch wood it seems to have stooped the clock ticking for now.

#7
Really? Interesting thank you. Do you mind me asking what meds you are on?

#8
Hi Giraffesandeskimos The only meds I am on are Co-Careldopa 25/100 3 times a day.

#9
Hi GandE

Your dad is very lucky to have such caring support around him, it really will make all the difference.

I’m probably a little younger than your dad (rising 62) but I can understand ”losing positivity” especially when newly dx. There’s a lot to take in - and I certainly don’t want to end up drooling and helpless. I felt these emotions before I started taking meds, and I was surprised how they pretty much completely went when I started taking Pramipexole (DA).

As to the tremor; mine varies a lot (even on the drugs) and is much worse when I’m stressed. Maybe what your dad is noticing is more stress so more tremor, rather than the symptom getting worse in itself?

And the usual advice (good in my limited experience): does your dad have access to a Parkinson’s specialist nurse? Well worth talking over the issues with them, including whether starting meds now would be beneficial for mood as well as movement.

I’m sure there are ways of helping you and your dad. Best, Semele

#10
Hi Semele,
Thank you for your reply. He has had his diagnosis and hasnt seen anybody except his neurologist about it. And that was to dx him. He went to the GP the other week and she didnt even know as the correspondance hasnt come through yet. I know there is a specilist nurse in his area and have spoken to the local PD support group. Who have been fantastic.
At this stage my Dad hasnt contacted anybody. Its me who has had the most support so far haha. Yes he is lucky to have us all around him and he deserves it. Raising us singlehandedly he had a struggle. It breaks my heart that now he has to struggle in this way. But I suppose as he himself said the other day, if this is his lot we just have to deal with it. I do hope he seeks specialist help soon and looks into the meds. Is it just Dopamine which people are advised to wait as it has a limited life?

#11
Re Tremor. I went from, no tremor to arm and leg shaking which amounted to the whole right side in effect, in less than six months after a car crash which precipitated the onset of unmistakeable PD symptoms and which led to the dx pretty quickly compared to many with PD. This apparently rapid decline has not been reflected in the amount of meds I need once on meds. and I am still on a fairly low dose of meds.four years on.
Many people feel that a shock can exacerbate the symptoms (but not necessarily the underlying disease process) due I presume to the effect of anxiety, literally shock - in your dad's case the shock of dx. Depression is common in PD and what is often confused with depression is a lack of get up and go variously described as apathy, torpor by the patient for which there is a medical name which escapes me. People also often go through a sort of grieving process for the life they had expected to have but most of us get through it and take each day as it comes.

They often describe Parkinsons as a designer disease because it affects people so differently. The upside is that you can't assume anything. For example, just because a person is inclined to shuffle doesn't mean they can't dance or ride a bicycle both of which are recommmended for Parkies. Exercise is good for your mood as well.

Best wishes



Best Wishes

#12
Hi GandK
RE your: “Is it just Dopamine which people are advised to wait as it has a limited life?” I’ve read several threads on the issue of whether meds have a limited “self life”, of which this is one:
http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=treatments&topic=diagnosed-last-year&page=1&#hi-dj-i-was-diagnosed-recently-and-faced-the-same

I have to say I’m not sure which way I lean. Except to say I wouldn’t be Puritanical about it - if meds helped your dad now, I’d take them now, and let tomorrow take care of itself.
BW

#13
Hi
I think it has all been said and more eloquently than i could.

There are very good publications available to download on this site and in my experience the helpline is excellent.

As to medication, it helps with motor symptoms but also non motor like mood and tiredness i find. By the time we are diagnosed we have already lost 70% or more of our dopamine. There is a school of thought that without stimulation of our neurons they lose their capacity to function, if this is so then it helps maintain brain function by taking medication.
My nurse likens Parkinson peoples need for medication to a diabetics need. I really don't know what is right except that without medication my life would be much more restricted and personally i dont want on put life on hold by not having treatment.

After the shock i found some positives, my social life has expanded with some wonderful friends and I found a new focus which is satisfying. All the best to you and your father.