Different stages of PD

[allofatremor]

Hi any advice or other experiences would really be appreciatedMy husband was do 5 yrs ago a d has been doing ok so far.

I believe stress is a no no where PD is concerned, and there is plenty of it around us most days.

My husband is really a fighter and does not give in very easily, but on his visit to husband specialist on Friday he has become extremely low and depressed, and I can't seem to snap him out of it.

His specialist has told him to be prepared for the next stage, (this was after examining him, and tests etc)

He said that his memory will deteriorate dramatically and within the next approx 12 months he will start seeing things, examples given were, People,Animals,insects, and also that he can start to become more paranoid.

This has knocked him sideways, especially with him doing ok for so long, and I am wondering if this is how it goes? Or is he letting him know what the worse case senerio is, and maybe this isn't something that happens to everyone?...

Let me know your experiences please guys, thanks in advance to all.

Another thing is apparently there was a discussion on radio 2 recently about a new drug for PD, did anyone hear this? I didn't I missed it, any views or anything to put my husband in a different frame if mind, thanks all xxxxxxx

[moonel60]

Hello

I was told by my neurologist that I can have that kind of reaction to PD meds, he never said that seeing things and becoming paranoid is part of PD. He said the medications cause you to have these reactions!

In April this year I had emergency spine surgery to remove two discs , some bone spurs andfuse spine. Nothing to do with PD. I was given Morphine , endone, targin , lyrica etc which caused me to have halusinations, Become paranoid , etc it was awful, but the hospital said it was a normal reaction to the meds most people react that way especially if they have PD!! (Rediculous ) I was blown away by the attitude that ... oh its just a side effect of meds !! Well maybe meds not worth taking!!

I went off the PD meds over a year ago after getting terrible side effects from the meds, such as over spending money, (apparently if you are prone to gambling , you gamble ! Im not so i spent money !! ) nightmares . Falling asleep in moving car!! Doctor said "normal " reaction to meds!!! Aaaahhhhh!!!

I am taking natural suppliments, and using essential oils which have no side effects and im so much better..

you need to research everything and be weary that the meds do effect different people in different ways!!

Tell your husband to just keep as possitive as he can and find some things he likes doing that will keep him busy and occupied.

I wish you all the best , he needs to finf out what doctor means by those symptoms... are they side effect of meds or PD ????

I choose a different specialist to the one I was originally sent to as he wanted me on heaps of meds and also told me over the top things like " you'll definitely have brain surgery " I was only in early onset !!!

Take control of your choices and research.

All the best to you

Robyn x

[parkie13 in reply to moonel60]

We all must look like guinea pigs to the doctors who do not have PD. Well let's try this and let's try that since I don't have it it's okay for you to try it. Mary

[tbirchf in reply to moonel60]

Robin, What natural suppliments do you take? I would love to help my husband get off the sinemet, I think it is causing the extra wiggle movements. He was diagnosed 5 years ago, doing pretty well but developing wiggles and more stiffness especially in his hands. Also has some swallowing problems.

[asmckay]

What unuseful advice. No wonder your husband is depressed. I have just recommended Dr Gary Sharpe's websites, and do so again. Gary was diagnosed with PD at 37, and followed an entirely conventional route until 18 months ago. Since he began to do more and different things, he has improved dramatically. His progress is documented in lots of video clips, and I hoe that you husband will find it inspiring, and choose to look forward to bester, not worse, health. facebook.com/outthinkingpar...

[Winann]

Hi Allo

I wonder what age your husband is. The prognosis appears a bit premature to me. My husband is 78 and was diagnosed with PD 20 years ago. He was good for about 12 years and then he started noticing gradually more mobility problems. Currently he is at Stage 4 I would say. Some days he would have difficulty walking. Most of the time he uses a rolator but other times he can manage with a stick. He had pain in his legs for about 2 years which kept him from sleeping and things were very tough but then he was given Lyrica and now has no pain, sleeps all night. It is important to watch out for three things that makes his condition worse, namely, constipation, dehydration or infection.. These are the three things that makes PD symptoms worse. Otherwise he and yourself will adjust gradually to the changes in his condition.

[allofatremor in reply to Winann]

Hi thank you for your advice, my husband is 70, to look at him you would not know he has PD, he is very fit considering.

He stumbles sometimes, gets forgetful, seems to raise his arms up high say when making a cup of tea, it's like he's conducting a orchestra.

He has fallen out of bed a few times, but I have noticed his paranoia more recently, but the is extreme stress around him daily at the moment with other issues regarding family etc.

Has your husband ever started seeing things etc that are not there?

Allie xxx

[Winann in reply to allofatremor]

Yes he went through a stage like that but I do not hear him mention it now. Perhaps he has just got used to it. Considering he has PD for 20 years now he is quite good at the moment. Today he went to the Shopping Centre with me and walked with a trolley. He is much improved to what he was a few months ago. We even got a wheelchair as we thought his walking days were over. But he is walking around the house a lot of the time unaided. The only change in his meds is instead of a 250mg Madapor x 5 daily he now takes 2 x 125mg x 5 daily.

[frelin2017 in reply to allofatremor]

My understanding with PD one does not hallucinate. With Alzheimer's there is the possibility of hallucination. Meds can cause hallucinations.

[ddmagee1 in reply to Winann]

Good advice! Yes, with my advancing PD I've had trouble with constipation, dehydration and infection- lots of trouble. Presently, they are all under control, but I had to find out the hard way. I was not told ahead of time. That's the good part about this forum. Many times, doctor's treat the ailment, but, maybe because they don't have the ailment, they don't always tell patients what to watch out for. Other PD sufferers have helped me to understand what I'm going through, in some ways, much better than what I've been told by my doctor.

[allofatremor]

Thank you everyone for your great responses, I will follow up all the advice and sit and have a good chat with him to try and pull him out of this mood, and thanks to you all I think it will work, million thank yous xxxxxxxx

[laglag]

I can't believe a neurologist would tell your husband such a depressing view of PD. A positive attitude goes a long way. Most PwP's (Persons with Parkinson's) can exercise, take supplements and eat right and feel much better than in years past. Times have changed. I think your neuro has some "old school" thoughts. Some meds can make some people have hallucinations, but it depends on the person and the type of meds. Some do not have side effects, some do. I would definitely change neurologists and make sure you find a Movement Disorder Specialist. As far as the new drug...New drugs are being tested all the time. It takes awhile to do the testing, but your doctor should know when something new comes out. Make sure he is exercising strenuously. Exercise helps a tremendous amount. Keep researching and asking questions, especially on this website and you will learn a lot from others that have experience in living with PD.

[frelin2017 in reply to laglag]

Just learned about "LSVT Big" and "LSVT Loud" which are program developed and scientifically researched through funds from the National Institutes of Health.

LSVT stands for Lee Silverman Voice Treatment. The "BIG" is treatments are delivered by physical therapists and work on walking and taking Bigger steps, improvement balance and such. the LOUD is treatment for improving speech.

lsvtglobal.com/patient-reso...

[Astra7]

Sorry to hear that. His neuro sounds awful. No point in being so negative when they don't really know what will happen.

The new drug they have had success with is a diabetic drug called something like exenatide. If your husband is in such a bad situation maybe he could try it? Dont know how easy it would be to get a prescription, but if he had nothing to lose a dr might be willing to prescribe it. In Australia they would have to apply to the FDA to prescribe for a new purpose.

Also is he taking NAC? I go on a bit about it but it really helps with the mental confusion side of things.

[Christin313]

My father did not experience seeing things until he was over a decade into PD, and was on additional meds for a 2nd diagnosis (myasthenia gravis) by that time. And, the people he saw did not upset him. I asked him if they were frightening, and he said no, that it was odd but he always quickly realized it wasn't real (at least what he was seeing inside the house).

What a doctor tells a patient can make a big difference. There are lots of what-mays that never happen. My father did better when a neurologist praised what he could do at that time. I wish you the best in trying to undo such a negative visit.

[Lionore]

Like others have said, I would change to another neurologist who is a movement disorder specialist as soon as possible. Your husband's doctor should never have predicted his future. Everyone with PD is different! From what I have learned from my own experience (I am 70 also) and that of others, many of us who exercise vigorously daily, eat a healthy diet of fresh, unprocessed food, eliminate sugar, manage stress, rest when needed and work hard to be emotionally and spiritually healthy with good relationships do very well for a long time. Even if this doctor has the ability to predict the future, today is all any of us have, regardless of our diagnosis. Why should your husband be given the doom and gloom about bad stuff from PD that might never happen before some other health issue or calamity does him in many years from now?

[Bailey_Texas]

Hello allofatremor.

I can not think what to say to you i am so mad. That dr is the dumbest asshole i have ever heard of,. He should be hung up by his thumbs and beat to death. Those things are not part of parkinson's they are side effects of meds. As for his memory don't know how he could know that. Even if it was true he should not tell your husband about it. He should tell you what to expect so you could watch out for it.

Never let this person near your husband again. He is a idiot. I am 12 years with pd and have seen a few things that where not there when on some meds but not since stopping that med. I at 12 years have just as good a memory as i ever had. At my stage of pd i still do any thing i want. I stopped driving for few months but am driving again now. I have 2 corvettes i drive.

Being positive is a must for pd.

Nothing happens to every one who has pd we all walk a different path some are short some are long.

Why i feel so strongly about this is my first dr told me i had ALS (Amyotrophic lateral sclerosis) a death sentence. This was on friday he just told my wife and i turned and walked out the door. Then the nurse just sent us home. Worst weekend of my life. Went to another DR. on monday and was told i had PD.

[Beckey in reply to Bailey_Texas]

Bailey I cracked up at the beginning of your plainspoken post. All true!

[ddmagee1 in reply to Bailey_Texas]

Thank goodness you went to the second doctor!! I always recommend at least 2 opinions with neurological disorders, because of the complexity of neurological anatomy! Some ailments do not have "for sure" measured diagnostic criteria.

[hopedope in reply to Bailey_Texas]

I'm glad you are driving again. That's great.

[hopedope in reply to hopedope]

I'm glad Bailey is driving again. Hope moonel60 is too :).

[DEAT]

Oh Bailey, you are truly priceless. Love your post and your passion.

Allofatremor i wish you and your husband all the best. The future is unknown to any of us.