Hi, My father in law has parkinsons , was diagnosed late 2005 , started meds early 2006 and has been able to carry on, albeit it a little slower, as normal. This started to change about a year ago, at the same time another family member became ill and attention was somewhat diverted away from my father in law, in this space of time , approx 6-9 months, my father in law really started to dip, he would sleep more often during the day, be really confused and had started to worry my mother in law so at his normal yearly check at the beginning of September these concerns were discussed with the consultant who decided a change in meds was neccessary as he could see a slight deterioration. Well within two weeks of the change (weaned off a night time med, which the consultant actually thought was something else) and increased day med (please dont ask me what as im not that well informed) I know its sym ??? during the day, anyway. My father in law in the space of a week or two in virtually incapactitated. He is certainly less confused and more aware now (you can see the frustration and pain in his eyes) but now he cannot stand alone, he cannot shower, he can not do anything that he was doing 4-5weeks ago when yes he was a little confused for physically he was fine. Now the worst possible physical changes are hitting him all at once. My mother in law rings the pd nurse weekly only to be asked the same questions and to be told maybe muscle relaxants will help and they will organise this. This hasnt happened and every time my mother in law rings she gets fobbed off again. Now im no medical expert and have never looked after anyone llike this however shouldnt the consultant see him again ??? Can anyone offer any help or advise as im sure that this is not normal. My in laws are very old fashioned in they wont ask for help and trust in the professionals hence me joining.

Hi louc76

Glad you found the forum. You sound really frustrated and i dont blame you. I cant advise you but can tell you what i would do if i was in your shoes. Ive been using this site since Aug 2008 when my husband was dxd with PD. I also have a good friend who has had PD for over 15 years. Im no expert but i have done a lot of reading.

I suspect that the drug you've mention is Sinemet. Firstly, i suggest that your mother-in-law keeps a written record of all her conversations with the PD nurse. Secondly I suggest that she writes to her husbands neurologist and explains the situation at home. Personally i would also try to get the telephone number of the neuro's secretary and see if she can speak to her/him. At the very least, I would be pushing for a telephone conversation with the neuro. Id do my utmost to push for another appointment. It may be that things will improve as meds can take some time before an improvement can be seen, but i would want that reassurance from the horse's mouth. I think if concerns are made in writing that they hold more weight.

You could also try ringing the PDS helpline and speaking to someone there. 0808 800 0303. They may be able to offer some advice.

If you want to understand more about PD and the different drugs/treatments etc, may i suggest you get a copy of the following book.

The Daily Telegraph, Parkinson's Disease - A guide to Treatments, Therapies and Controlling Symptoms by Dr David A. Grimes.

I bought this book two years ago and have found it very helpful. It may be that there is something more up-to-date by now, I dont know.

Best of luck with getting the support you need.

Carrot

Carrot, thanks for replying, im so grateful to be able to sound off without the worry of overstepping the mark , which to be honest as the daughter in law, i sometimes feel i am, as i stated my in laws are just so old fashioned which is very very different to my own upbringing and my own parenting skills, mother father in law is 79 , my mother in law nearly 60 , they also have my father in laws sister resident with them she is 80 and has been blind most of her life, she is the family member who became ill with cancer at the start of the year which diverted the attention away from her brother. The changes since his medication have been so dramatic, this is a man who went to bowls, walked everyday for the paper, drove the car, cooked tea, he actually was really well, just a little confused and slow sometimes. Now well , he cannot even get up without help, cannot walk, has lost weight as cannot eat well and i think is becoming a little depressed as he sat his siser down to thank her, told my m in law, he wont be here much longer. This is not my father in law, it is like he is on no medication at all. Ive asked my husband if he feels he could get involved, though like them, he doesnt want to be forceful, its just not in their nature. Thank you for the helpline number, im going to try and get my m in law to ring, i will get her to start writing things down as im also a great believer in this and i hopefully get some answers and things will start improving. Thanks again carrot nice to know there are nice people out there. x

I agree with everything carrot says but my personal hobby horse regarding this and any other issues concerning a PWP is he/she a member of a local branch. If he is then he has access to a Welfare Officer who will take on and liaise with the people she thinks can help the most. The W O will not make comment or suggest any changes to medication but will call attention to the person's predicament.That way a paper trail will be available on an official basis. If the W O is unable to do anything then a referral to her branch chair or to an ISW ( Information Support Worker) will take place.
Their is no substitute for personal knowledge but for many PWP's it is difficult to comprehend the problems that arise when meds are changed and knowing there is someone out there to take their case to is a great comfort.
There are 120,000 PWP's but only 40000 members of branches which saddens me. We do not receive statutory funding and we are not likely to either because we lack clout. Think how much more attention we could get if everybody became a member even if they did nothing else than swell the numbers.Having said that our branch would still provide the service irrespective of the PWP's status.Good luck because I know how much you are worrrying!!

Dear Bogman
I am a member of my local branch, but there is no welfare officer

Damn !!!

I really thought every branch had one but maybe we are blessed in our area because we also have a dedicated Parky Nurse.

I am the chair of our local branch and we do have one. However if we did not then I would not be uptight if a member came to me direct. The chair can contact the ISW and/or the Area Supervisor. Have you talked with the chair of the branch and asked his advice?

The above would be my way of getting some help!

No dedicated PD nurse in this area either. Perhaps I should move

Naw ! You stay where you are but send me your Father in Law (joke) !

Seriously though do talk to your Chairperson ( I cringe I have to call it that)and ask his/her advice. I am sure that they have the conduit to someone who has the answer.

As Chair if I did not have someone to contact I would be making notes about cases like your Father in Law to see if there is a pattern. Nothing sinister intended just stats. I have experienced two similar cases in the past year, one was resolved by being put back on to the previous med regime the second is still ongoing!

It appears to be a leap into the unknown when a PWP goes from say an Agonist to Levo Dopa and as we are told that no two cases are alike then it would follow that no two reactions are the same.

A little knowledge is a dangerous (especially in my case) thing so without preaching or prejudice I would encourage you to seek the help of the Chair and the ISW. I just think it is important to follow the official route because if something is wrong then that is the only way that changes can be made.

One last thing, good people like you make all the difference.

Well , last timeI checked my FIL died 20 years ago! You are perfectly welcome to MIL

Sorry to hear about FIL but failed to notice that I was not communicating with the person who originally posted the ?
Please accept sincere apologies. tricky this communication lark but will try to be more observant in future.
Thanks for offer of MIL but I have just got my life back after 8 yrs of my MIL living with me.
Tempting.................but no thanks.

I would value your opinion re advice to appraise ISW and Chairperson?