Diagnosed yesterday
 

My dad (69) was diagnosed with early stages Parkinsons, yesterday.
He's had a tremor in his jaw and a few other issues for around 18 months, but as he also has fibromyalgia and was taking lyrica, we put his symptoms down to lyrica (side effects; slurred speech, slowness of movement, poor balance etc).

Anyway, several people have told me it's possible to live a good life with the meds out there and to be really positive. That's our best line of attack, and also making sure we don't surround ourselves with negative people. Nothing worse than other people who drag you down with their nonsense. Can anyone offer any advice? Cheery thoughts? Best things to do next?

Hi Grace,

So sorry to read about your dad. But you've come to the right place. There is a lot to learn about living in the land of Parkinsonia and it would be easiest to ask the very knowledgeable and kind people on this forum as questions arise.

In general you will find people vary both in symptoms and drug response. The same is true regarding the rate of progression. There are people who have had PD for 30y so try,once the shock/reality has passed/sunk in to be positive.
Once the correct drug dose is found your dad will most likely feel better than he has for years. Given his age, the treatments available and the supporting therapies (exercise,physio etc) I don't think the future is as bleak as it first appears.
The best advice I was given was by my Gp (md) who said "its important to manage your own meds" Basically only the Parki person can decide whether a particular drug regime is for them.

Im in my 50's,diagnosed 2009,just in the process of adjusting my meds,helping my daughter with her university application,planning a party and looking forward to Christmas. Still enjoying life and treating this pathetic little disease with the contempt it deserves.

Keep in touch

Nigel

I'm 74 and possessed PD for longer than 20 yrs.
some good some bad but now with the right meds for me, I live a pretty active and good life. Attitude counts for a lot. So, to your Dad, we're all behind you in body and spirit..

1. join a support group
2. read the michael j fox foundation website
https://www.michaeljfox.org/
3. read NPF website
http://www.parkinson.org/

this is a very good website, canadian
http://www.cno.parkinson.ca/site/c.j...Highlights.htm

buy this book used, under $10
http://www.amazon.com/Parkinsons-Dis...s=Eric+Ahlskog
there is a new revision
http://www.amazon.com/New-Parkinsons...s=Eric+Ahlskog

your father will benefit the more you know about the disease and medications. everyone is different, there isn't a best medication doseage/etc. for everyone and adjusting drugs/doseages can be time consuming and neuros are overwhelmed so will sometimes write you a RX and not really explain what the next steps are for you to do if your father has unpleasant side affects. so my advice is every time you see a neuro for a RX change and with pd being progressive you will gradually increase doseages and likely add another drug or 2, be sure you discuss how long to wait to see results, when to call if your father has side affects, and what the next step will be if the expected benefit doesn't occur. for example, if the doseage is changed to 150mg 3 times a day, ask what the next option would be if that doesn't help enough in so many days, try to have a plan so you don't have long delays waiting to talk to a dr. or nurse to be told what the next step is

read up on diet, exercise, protein can interfere with one drug, the gold standard l-dopa, being absorbed. exercise is important. regular bowel movements and getting enough fluids are really important if he's taking SINEMET (cabidopa/levodopa). taking the meds, eating meals on a schedule are important.

best of luck.

Hi, my cousin's husband came up with PD in his 60's and was doing well but then had some bowel issues and died suddenly from those complications.

This tells me to keep really regular and I have read about magnesium support for so many of us and especially with so much drug use. Personally, I've had issues from drugs and bowel blockages, I've learned so much thru the yrs. With PD, Vit D is critical as well. Vit D is so deficient in much of the population. Veggies and moderate protein and keep hydrated.

Thank you so much!! Truth is, my dad has struggled with depression and other things for years so actually we want the meds to do exactly as you say - provide quality of life. He's being very positive and although we've all looked into it, have decided to stop googling now and just take things one day at a time. He's got a very lively dog and enjoys long daily walks and that will continue. Positive thinking really is so important. Not being unrealistic, but just making the best of what comes our way. Thank you for your kind response. :)

My dad had a slow progression about 20+ yrs , things are a bit trickier, but still good days and smiles happen..

If at any time you notice possible side effects appearing or getting worse - call his PD doc and let them know.
My dad's doc is always good about adjusting or stopping a med if adverse effects happen..

Sometimes a med will even be fine for weeks, months or longer and then it will start to cause troubles..
It can be a bit of a try & test to see what works best case by case..

It's been 16 years since my first definite symptoms and 13 years since diagnosis. I give exercise credit for how well I feel I'm doing. I walk 3 or 4 miles most days with friends, am planning a trip to Europe in the spring, and just retired from a demanding job a year ago, although I did work a shorter day the last few years.

I find it absolutely essential to be sure I'm well hydrated, and it really helps with medication absorption to avoid protein at the same time. Half a cup of prune juice and a tablespoon of ground flaxseed keep things moving.

When I was first diagnosed I thought that I would try any "remedy" that seemed reasonable and didn't break the bank. My latest experiment involves Dr. Terry Wahl's diet, and very early results are positive. My only problem is that I've tried it before and have a heck of a time sticking to it in spite of good results.

Best wishes to your dad.

Well, I've had a strange old day. I saw my dad for the first time since diagnosis earlier in the week and he seemed about the same; he's got some heart issues and a chronic pain condition so has always moved slowly, but I was watching him read something and all of a sudden the lower part of his face went into a big tremor/spasm. He didn't even seem to notice it, but then put his teeth together and it stopped. I've never seen anything like it and I noticed his hand was a bit shaky too. It seems that this has started since his diagnosis on Monday - which is so strange. He's not on meds yet but should be starting them this week.

I just had to keep reminding myself that drugs will help and that there ARE much worse things to get. My dad seems fine in himself - he was later trying to do some DIY, he was up and down the stairs with no problem - but the facial/jaw stuff was quite strange/frightening. I guess it's just a process of adjustment.

Hi Grace,

Stress is can be like kryptonite to someone with Parki's. I can yo-yo from fairly normal to statue in minutes. When my wife was diagnosed with oral cancer 2y ago I was'nt prepared mentally, I got up and froze,nearly falling flat on my face......I don't usually have a problem with freezing.
It is my belief that some forms of PD are caused by long term chronic stress.
Another thing is Parki symptoms are made worse when other health issues arise. I must warn you Grace getting the correct drug regime sometimes takes a while and the side effects can be unpleasant. Having said that they 'do' work so try be patient . Despite his health isssues your dad still gets out,does diy etc he sounds like a fighter and will no doubt cope with PD.
The love and concern your posts reveal tells me an amasing dad has an amasing daughter...what a team ! look out Mr Parkinson.

Nigel