I guess it's advancing

[Ewansmommy]

Hi everyone. My mom in law was diagnosed about 2 months ago, and were surprised to see she responded to carbidopa/levodopa. However, the benefits seem to have stopped working. She now has a slight hand tremor (brand new), and is leaning significantly to the left. Almost so much that sitting in a chair becomes laying in the chair. Her mood swings are really hard to deal with. Both my husband and I were previously in abusive relationships, and get triggered by her yelling at us. No one seems to understand anything (doctors and medical staff), so I'm forced to look through as much info as I can find on this disease. It's all so tiring.

[imli]

Sorry to hear about your mother in law. The levodopa usually stops working after a while. My Dad took it for two years and we increased and decreased doses to see if it was still working once we noticed that the diswase was progressing / and it seemed to make no difference so we discontinued it.

As for the moods, my dad was a very mellow man so he did not yell but he did get very depressed from time to time. Ask your Doc for an antidepressant and that may help. The falling to the left and the hand tremor sound very familiar- dad definitively had that. Your mom in law must have had the disease for at least 4-5 years for her to be at this stage?

Although I hear everyone is different.

[Amilazy in reply to imli]

I agree with imli, M been on levodopa for 3 yr but the effect is wearing off so will probably wean her off it by Christmas.

By sound of it you and your husband need support to look after your mum. I would point you to the PSPA if you are in UK or CurePSP if in USA. As they have good literature for medical and care professionals who may never have come across PSP and not be aware of its awful effects. You need to contact your local hospice who may also be able to help with advice and help.

If in UK and you have not got P.I.P (attendance allowance if over 65) for your mum and carers allowance for yourself contact either local CAB or Moneyadvice Service to assist with your claim.

Good luck Tim

[Heady]

Hi, really sorry to hear your mother in law has this evil disease. You are right, nobody know or understands anything about this disease, over here in UK, the medical profession, don't even seem to care!!! Our consultant, told us to Google PSP, that was the sum of the explaination about the illness we got!!!

So yes, you do have to find everything out yourself. We will help, as much as we can! All my knowledge, comes from the wonderful people on this site. We will tell it, as it is!!! Warts an' all! Ask any question, someone will know the answer. Rant, rave, express any feeling, we will understand!!!

I am afraid, it's one day at a time!

Lots of love

Heady

[Ewansmommy]

Thank you for the replies. We've been trying to get a diagnosis for about a year, but suspect the symptoms have been present for about 5 years. She's very private, and hid the problems from us until they got so big she couldn't hide them anymore. The Sinemet worked for only about a month before we started seeing a regression again. Her neurologist has pretty much written us off...said there is little she can do to help at this point. It's just nice to be able to talk with other people going through it.