Progression of PD


#1
Just thought I would share my latest assessment. Confirmed that my PD has progressed since last October and March, the lindop scale revealed a score of 62 out of 108, previously 14/108 so a significant rise. Over the last three months it has been obvious that i have deteriorated and i am very concerned. i seem to get new symptoms weekly if not daily. Daily life is a real struggle in every way. My PD nurse is fantastic and she has put in place lots of help and new medication to sit along side the levodopa. I am on the verge of loosing my job as quite simply i can not perform my substantive role, this concerns me as i am not sure what benefits are available, although i have a meeting with a support worker who works for the PD org. I have been told that the rate of progression is worrying and that my outlook at the moment is bleak. based on the progression i am also concerned the disease may be MSA. Like PD there is no specific test so difficult to diagnose, MSA has symptoms identical to PD but is more rapid. can anyone empathize with me or have similar issues. i am happy to receive emails and i would also be happy to chat.

Russ

#2
Hello Russ.

Sorry to hear about your difficulties and anxieties. My own position is rather different, I was already retired before diagnosis. That was 2 years ago. From the little I know after meeting and talking to others in local puk groups, you may find your outlook improves if you can manage to give up work. It is a big step to take and financially frightening. The people on the helpline will give you the sort of info you need and where to find further advice and support.

Please keep posting. You don't mention if you live alone or with family?
Best of luck.

#3
thanks, i am 45 with a family, now very insecure and extremely worried. life goes on a new chapter and test to complete. best wishes

#4
Hi Russ,

This is also something i am interested in finding out. My Dads about to turn 60, diagnosed with PD over a year ago and i'm wondering how my parents will get by if he doesnt managed to work another 5 years to retirement! with no private pension plan..

#5
Hi Russ and Imagine, Worrying about what would happen if one was jobless will make the pd worse. Have you tried going somewhere eg Citizens Advice Bureau and getting them to go thro with you all the options of how you could support yourselves and benefits etc if you were without job? Having a few alternative plans might reduce the stress and stop the fast progression love Sunray

#6
Hi Russ, I can certainly sympathize with your concern about the rapid progression of the disease. I think a lot of newly diagnosed have at the back of their mind that PD is nasty, but that it could turn out to be nastier still , it could be MSA, as this manifests itself gradually and results in a revised diagnosis after several months. I hope your symptoms are not that bad and that it is just a temporary glitch. This does happen sometimes with PD, you could have a short acceleration of symptoms and things will settle down again. Worrying about this makes things worse too. Stress is not good for PD. The helpline of Parkinson's UK is the first port of call for all the info on benefits/rules/help available, etc. for people in work diagnosed with PD.
Has medication given you any relief? Maybe it should be adjusted? Do you have access to a Parkinson nurse with whom you can discuss your concerns? Best wishes, Kate

#7
Hi Everyone

I do hope you are feeling a little better Russ symptom wise ? Could anyone explain to me what MSA is and what other symptoms it mainfests itself ? Janie

#8
Hey Russ i too am only 43 was dx 3 yrs ago i gave up work pretty much straight away as my line of work (window cleaner /forklift driver) it wasnt safe and im not trained or educated enough to do anything else .The benefit side of things isnt too bad i suppose it depends on your situation.The first thing i did was to get DLA forms filled out they are a bit daunting but your PDS worker should be able to help you with them if not get CAB to help they will allow 3 hours to fill them out. I dont know what your situation is but you should get middle rate at least Get your doctor onside for support he can write letters of support to DWP.Is your wife your main carer?then she can get benefits too carers allowance etc .If you are not sure go onto GOV website there you will find info you need regarding benefits

#9
hi janie
msa (multiple system atrophy) is a very rare disease that in one of the two versions is similar to pd and occasionally misdiagnosed as such. the disease tends to progress more rapidly than pd and doesn't respond well to levadopa. that isnt to say that if you dont respond well you have msa, there are plenty of other reasons.
msa affects different cells from pd but in the same area hence the similar symptoms.
for people with msa it can be extremely difficult to diagnose for the first few years. on the other hand if you respond well to levadopa and have normal pd symptoms you can be fairly confidant you dont have any other parkinsonian condition.