PD

[ringsrud]

My husband has PD and I (and Dr) have noticed it is progressing rapidly. His judgement seems to have taken a huge hit. Don't know how much longer I can manage/handle him. Dr has mentioned placement but neither of us want that. He's only 67. Any suggestions or comments out there.

[Bailey_Texas]

Please tell us how long he has had pd and what meds he takes or has taken. Trying new meds and the use of exercise can turn someone around and give them back their life. I know this possible because I did it after 8 years of having Parkinson's.

Please don't give up until he has tried every thing possible he deserves a chance at getting some of his life back.

I am 62 and when i am on you can not tell i have PD. I am on 90% of the day.

[ringsrud in reply to Bailey_Texas]

He was diagnosed 14 years ago. First 7yrs had a mild tremor which could be controlled by medication but had serious sleep disorder. Then his balance started to go with frequent falling last few years (2-3 falls/wk) resulting in a hip fracture. Now with the help of a sitter he uses a walker full time. His swallowing has been affected - losing 40 pounds and has PEG (feeding tube) for meds every 2 hrs and food every 4 hrs. This spring his bladder (sphincter muscle) shut down and a foley was inserted. Had many complications/infections from catheter so removed it and is now in diapers. Latest thing is his thought process - can't use his cell phone, tv remote or read and he can not be left alone for one moment. Seems like one system after another is going. Can anyone relate to this. Only takes Sinemet for PD - lots of it! He is basically helpless but still enjoys football (but frequently I have to explain plays and penalties. LOL)

[Bailey_Texas in reply to ringsrud]

Has he ever taken any other meds besides Sinemet and how much is he taking. i take 18 25/100 pills a day. Which is 2 1/4 times more than the max dose by the makers of the drug. He sounds to be in the later stages of PD but trying different meds may help some.

As far as exercise goes if he can manage anything i think it would help. Just setting in a chair and doing arm lifts only or with small weights would help. It is not just the exercise but looking forward to doing something like exercise can give his mind something to do. It helps me to fill my day.

Now for you. Take the time to care for yourself. It is the most important thing to do. Because the stronger you are the better you can care for him. If you don't exercise find a program you like and begin as soon as possible you will not regret it.

Good luck

[Alistairs in reply to Bailey_Texas]

Bailey.

I did not appreciate that you take that much Sinemet. My consolutant is fine educated man but as dull as dishwater when comes to any ideas beyond the normal remit. Like you I take more than the 'recommended' dose of Sinemet and I change my 8mg patch twice in 24 hrs on my leg.

Also being playing with a slow release sinimet taken about 2 hr into my day. This seems to calm the downturn spike and if timed correctly I can exercise now and then do a full days work. I often go about my day as normal.

I am awaiting the savage side effects but none yet 6 months in . I take about 8 25/100 a day on average, plus the patch. I am also on wafarin for heart valve.

Interesting to note you take twice that - so room for more - good.

I am 60 just, and had parkinson for 7 years.

Alistair

It would appear that the gentleman in such a poor state has more going on than Parkinson. I am sure you will have been to check if he has a more sinister disease.

[Bailey_Texas in reply to Alistairs]

My dose is 1 50/200 extended release and 1 25/100 every 4 hours plus 1 6mg requip 24 hour once a day

[park_bear in reply to Alistairs]

FWIW I take the 50/200 C/L slow release only, 3x/day. Immediate release worked very poorly for me.

[ringsrud in reply to Bailey_Texas]

He takes 12 25/100 sinemet. He's tried many other drugs but has had reactions dr seems to think in his case less is better, of course he takes fish oil, daily vit,etc. We live in Georgia and our neurologist consults PD clinics at Emory in Atlanta and MCG in Augusta. I am able to have help from private sitters at night and some during the day so I can have lunch and play bridge with my girlfriends. This is my therapy! He has a Stephen minister coming one morning a week, a coffee group (a group of guys that he worked with) just listens to them talk mostly as his speech is very soft and garbled and I with the help of his sitters take him to ride three days a week all of which he looks forward to - But I know this is not much. Whoever said sounds like latter stages is probably right - but he's only 67years old.

[Bailey_Texas in reply to ringsrud]

Parkinson's knows no age or man or woman treats them all differently some have it 30 years some 10 years before it gets them. And every where between. I saw a man on the internet has had PD for 41 years and he is only 49. Got it at age 8.

[Juliachq in reply to Bailey_Texas]

That guy who has had it for forty years is in this forum

[Catlou in reply to Bailey_Texas]

What medications/supplements do you take and what exercises did you do? I need to try something too!

[Bailey_Texas in reply to Catlou]

I do crossfit 5 times a week

Crossfit is intense and hard

this is a list of our workouts

crossfitfch.com/wod

My dose is 1 50/200 extended release and 1 25/100 every 4 hours

plus 1 6mg requip 24 hour once a day

2 fish oil capsules

a daily vitamin

[Beckey]

What Bailey said.

Also, can you consult with a different doctor (a movement disorders specialist)? I would also seek out support services, through the dr.'s office, county health dept., or Parkinson's Foundation.

[Fredzu in reply to Beckey]

I call the Parkinson Foundation and the nurses are so helpful.

Fjohn1

[Beckey]

It seems many people on this site take medications in addition to Sinemet that have made a critical difference.

Exercise has helped me a lot too. At first I just did some tai chi. I'm wondering if a few visits from a physical therapists could be helpful?

You must be feeling physically exhausted and emotionally drained. Do you mind my asking where you live?

[Lionore]

Everyone's ideas have been great but at this point social services may be needed. You need to have respite from family, friends, or more realistically paid caregivers. See if you qualify for public services if private care is unaffordable.

[Tato]

Without knowing much about it, seams like your husband could qualify for DBS! Have you search that option?

[Hidden]

He is 67 , but age has nothing to do with anything really. You can no longer cope and he is getting worse quickly and the doctor sees it. Time to get serious about finding him a place. There comes a time when you have to salvage your own life. You probably have been a good care giver but it sounds like he also has dementia is setting in. Dealing with his personality changes, mood swings, poor judgement are problems you probably have not been trained to handle. You probably did not sign on to be a full time care giver in the first place and if he was rational he would probably not want to be a burden and would tell you to save yourself. Discuss with your doctor and see if you can get more help looking after him. It is sad that he is young but I suppose that you are around 65 and that has a lot more to be considered . You can not allow the complete quality of your life to be a cost of his disease also, maybe a conversation with others who are care givers to dementia patients (Alzheimer) at their support group meetings would be helpful.

Tough decision, good luck

[andrewij]

Unfortunately, and I hate to say this, it does seem like your husband has reached a critical stage in his Parkinson's development. Poor man, and poor you, there is more than one victim in this cycle. I had the DBS operation in September 2015, this has given me a life-line of sorts...

I am 60yrs old, I was diagnosed 11yrs ago. I rarely attend local Parkinson's group meetings, because all I see is other sufferer's going downhill, and "chasing rainbows. The chairman of my local group is retiring shortly, as his condition has worsened considerably. He was taking Sinemet, he is now taking Stalevo. This has made things a little better, but not much. I will be attending the Xmas lunch, with people having to have their food cut up, can barely walk etc. It will drive me crazy when I can barely function, I have the same fears and concerns as everyone.

I have recorded a song album, written a novel, and other books. People refer to me as an "inspiration". But, I don't feel like that at all. I am just a bloke who is doing stuff while I can.

[Astra7 in reply to andrewij]

How well do you manage now?

[andrewij in reply to Astra7]

I am okay some of the time, sleeping properly and tiredness are my biggest problems, thanks.

[Astra7 in reply to andrewij]

What is the title of your novel?

[andrewij in reply to Astra7]

It is called "New Friends & Re-unions", I have taken it off sale at the moment, I am re-writing it.

[andrewij in reply to Astra7]

I will send you a free copy, when I finsh the re-write.

[Astra7 in reply to andrewij]

Thanks!

[Bridielena in reply to andrewij]

I see it as you see it. Meetings are very depressing and the vision of some sufferers lingers in my head ......is that what I have to look forward to etc?

All this rhetoric too adds to my misery. I don't Post much any more. I can still do everything albeit with some difficulty at certain times so I just get on with it. Now 69 and have had the diagnosis since 2005. Falling is paramount in my eyes as was told I would end up not coming home if I fractured my hip.

Medical Cannabis has just become legal in my state of Queensland Australia. Saw my GP and he didn't bat an eyelid when I wanted to discuss it. Fobbed me off with 'I don't want every Tom, Dick and Harry with backache coming to me'. I wake up every day with diabolical low back pain and thought the Cannabis would alleviate that as well as help me overall. I guess i have to approach another more compassionate care giver.

Once up the pain subsides considerably but take a pain killer or 2 which helps most of the day..

Anyway thanks for listening.

Over and out

HGE

[Isthistheone]

I am convinced that Tasigna or a similar drug may one day be a benefit to all. This is the one that Georgetown and MJFF got into a tussle with. Of course there are risks, your due diligence is required! There is another that hasn't been researched as well as Tasigna. It's an artificial sweetener called mannitol. It is FDA approved as a food additive, not as a medicine. It is being studied by health researchers in Israel. Google mannitol and PD. You can read up and decide. One side effect, it can give you diarrhea if too much is ingested. For those of us battling constipation, that may be a good thing! It crosses the brain blood barrier when ingested. Most folks stir a teaspoon of it into their coffee or hot tea daily. Took my first dose Thanksgiving morning. I'll post after a month, make that New Year's Day.

Happy Holidays and good luck to all.

[Hidden in reply to Isthistheone]

I can only find old information on Tasigna from 2013 when the Israeli data came available. Do you know of any more recent, info?

And Merry Christmas to you.

[Isthistheone in reply to Hidden]

Check this link:. scienceofparkinsons.com/201...

[parkie13 in reply to Isthistheone]

I have ordered 5 pounds, have not received it yet. I am going to start on it also.#Ranico posted about it, I have also posted an article.

[Boyce3600 in reply to Isthistheone]

Where did u buy the mannitol? Also, I read ott is an osmotic diuretic. Do u know what effects it can have?

[Isthistheone in reply to Boyce3600]

I ordered it from Amazon. Two pounds delivered $35. Competitive prices. Side effects are discussed in the article. Due diligence absolutely necessary. Gl.