Can someone please advise me. I can not talk wth my fathers doctor as he gets angry when I question his diagnosis and meds he has prescribed to my father.My fathrer had mr scan.Three doctors have said my father has parkinson initial stage. My father used to take stalevo but that made him pokerface that it really scared me. His walking didnt improve with stalevo. The doctor then said he should switch to madapar but I didnt give him tbat. But my father has no tremor, no bloating not much rigidtiy except for very slow movement and slow walking and a bit of stiffness on right shoulder and right leg. Could this really imply he has parkinson?? How can I know??
Adviceon diagnosis: Can someone please... - Cure Parkinson's
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47 Replies
•
It is not easy to diagnose PD. But if the meds c/l do not work then it may not be PD. it is hard to figure out 100% even for doctors. I saw 5 neurologist (last two Motion Disorder doctors) till I got a correct diagnostic.
• in reply toion_ion
yes its very hard to diagnose..I hope it Works out fine...thanks alot
• in reply toion_ion
whats worse is that the doctors get angry when ı question their medication....would physical therapy help at all in his walking? is it possible for us to improve his walking??
Yes! Sounds like PD. He should start 2g thiamin HCL , twice daily.
• in reply to
the problem is we live in turkey, and here they have vitamin b complex which is not just b1 thiamine...there is however solgar thiamine....I dont know which one would be best?
• in reply to
here in turkey they have vitamin b complex which has thiamine and also vitamin 6...but there is also solgar thimaine...which would you advise? which do pd patients normally take??
• in reply to
Vitacost capsules. But Solgar will do nicely
• in reply to
Thank you I have bought the solgar Thiamine 100 mg I hope it Works, thank you
• in reply to
No! 500mg tablets are preferred as your father need to take four 500mg tablets or 2g twice a day. With 100mg tablet that you bought you will need to swallow twenty tablets to get two grams.
• in reply to
Roy. Their have been many postings by Steff you might want to look at them all before offering your diagnosis!
• in reply to
Thank you so much, yes I have had many help from here and Im really glad that there is this forum where I can actually 'talk' about the sypmtoms and problems my dad is having...thank you all for this, its so relieving and helpful to be able to share views on here, and Im grateful for this..thank you
Sounds like pd to me. You have described well your dads symptoms from what you have observed. I think that there is skill in feeling rigidity, a skill that doctors learn but I wouldn't know how to assess it.
How does your father find his symptoms, do they interfere with his enjoyment of life? What does your father say about all this.?
• in reply toHikoi
My father says he doesnt feel rigidity and he says he is fine...however, I see him not walk like he used to do 
he is extremely slow in walking and I fear he may stumble or fall...he can walk but his right arm doesnt move and his right shoulder is kind of stiff ı see....I just wish ı could start the right meds? one doctor prescribed madapor the other doctor prescribed trivastal..ı read that madapar can have side effects like dementia...and that trivastal is more difficult to absorb...ı just dont know which med would be better for him....he is elderly...and I just wish ı could give the right med..the doctors here are rather impatient when ı ask them something they get offended as to why ı question them...its impossible to have a dialogue with them...ı am thankful for this forum where ı can actually talk about this....ı just dont know which med would be süit him?
M1tz1• in reply to
Steff, my husband had late-diagnosed PD at age 80. When put on Madopar, it sent him into a deep sleep from which I was difficult to wake him -- Sinemet, too. Lots of people find those meds very helpful however, so it might have been his age or something in his metabolism.
Slowness without tremor is common in PD. Stiffness or difficulty on one side is also very common. How long did he take the stalevo and what dose?
• in reply toJuliegrace
my father took stalevo for 3 months....he took three times Daily 100mg x 3 a day...but what is worse we didnt see any improvement in his walk or talk.what is more scary, is that his fact became pokerfaced and his eyes had this 'drunk' look...which ı feared....when he doesnt take the staleveo he seems to hava a more 'concious look' in the eye....ı dont know if he should try trivastal? does trivastal have dementia as a side effect ı dont know? the doctor did say something about how the stalevo will cause dementia as a side effect and that ı should be ready for this...as a result of which ı felt like stopping the staleve to be honest
Ajssister• in reply to
I had a similar situation. When I reconnected with my brother he had a rt arm n hand tremor n I couldn’t tell if his whole behavior was PD or all the other drugs he was on for a myriad of things. I moved him in w me n began taking him off all the other meds that didn’t seem life sustaining. Started him on a few general vitamins, multi n Vit D and Magniseam. I got him ck ups w new primary care Dr n made him hydrate to bring that under control. Got his diet cleaned up w whole foods n no junk. After getting him off every other med except C/L n blood pressure med I could see more clearly that the tremors are real n have just connected with a Neurologist to confirm PD. I also got him going with Thiamine n fish oils and digestive enzymes and probiotics. I have also written dr Constantini for guidance. My brother is WAY MORE clear now n able to feel n see the difference.
It’s a journey but you can do it. Good luck n God bless you both.
• in reply toJuliegrace
ı dont know if its 'difficulty ' on one side...it just seems to us that the right side of his body that is the right leg is slower in moving when waking, and right arm doesnt swing when he walks, and the right shoulder seems to fall down and seems kinda stiff or immobile from what we observe....however he does all his tasks like dressing up and sitting etc...but he doesnt have energy to do much....ı just dont know if its pd or not
Juliegrace• in reply to
It sounds very much like PD to me. You can call what you describe on his right side anything you choose, but it is clear that his right side is affected.
My mother has PD, her brother has it, I have it and we all present differently. If you believe it may be something else and your doctor is not responsive, you should seek a second opinion.
• in reply toJuliegrace
if its PD, which it most probably is, then should he take madapar or trivastal? ı dont know....do levadopa meds cause dementia in elderly patients...is trivastal have less harmful effects? ı am indecisive
Hikoi• in reply to
Parkinsons disease can cause dementia but Ive Never heard that levadopa cauae dementia, where did you read that? !
I dont know Trivastal but iit is a dopamine agonist i think. Older people can get hallucinations from them but they can from levadopa too.
PD is a notoriously difficult and complicated condition to treat. It can take a while to find the best meds combination.
• in reply toHikoi
Thank you so much. No I didnt read that levadopa causes dementia but one of the doctors said that my father can get dementia as a result of pd...I think I had heard that antiparkinson drugs can cause dementa as a side effect..I feel that my father may have dementia too as he seems to forget things
Hikoi• in reply to
No dementia is not generally considered a drug side effect, drugs can tip the balance into a psychotic episode but so can stress and anaesthetics etc. Its often not clear cut what causes what and I notice people here blaming one thing when it could well be something entirely different.
rhyspeace12• in reply to
My husband has Parkinson's dementia. It is it's own type of dementia. He takes Seraquel for the psychosis it causes and he is doing better. His brain functions and he is intelligent, but the Parkinson's dementia slows it down. If you ever need advise on handling Parkinson's dementia I'm here. Just forgetting things isn't dementia.
• in reply torhyspeace12
I would be glad to speak to you. How does one know its dementia? My father has been diagnosed with initial level of PD. But I see that he forgets somethings. For instance, he asks me one question, then 2 minutes later he asks me the same question over again...I tell him he had asked the question to me just 2 minutes before but I feel he doesnt remember it. He is very intelligent, but I see that he forgets things. Can you plesse tell me how we can know whether its dementia or not? does dementia Show in MR scan? how can I tell if my dad has it or not. I would be grateful if you could please get back to me on this.
• in reply torhyspeace12
Also do antiparkinson meds like levadopa or any of the other anti agonists cause dementia? is Parkinson dementia caused by antiparkinson meds?
• in reply toJuliegrace
I have taken my dad to three nurologists in movement disorder...they all said its PD but one prescribed madapor and the other prescribed trivastal...ı just dont know which has lesser dangerous side effects?
Juliegrace• in reply to
You need to do some internet research specific to those particular drugs in addition to asking here. What works for one person or another here may not work for your father. He is, most likely, going to have to try one or more medication to find what works best for him.
Hikoi• in reply to
YES, pd saps your energy. By the time we are diagnosed we have lost about 70% o& our dopamine neurons so your Dad is running on 30%.
We need dopamine to make our muscles work, so why do we have such trouble accepting pills to help, we wouldnkt hesitate to take meds prescribed if we had diabetes and lacked insulin.
• in reply toHikoi
Yes you are right I should definately start the meds, thank you so much on this , Thanks
• in reply to
I suggest searching on this site, Dr fahn and his instruction regarding c/l
Has he lost his sense of smell? My husband and a friend with PD both did.
• in reply torhyspeace12
when he takes the stalevo he seems to have a 'mask' on his face which is disturbing for us. His mimics and expression freezes when he takes the stalevo. his walking nor his talking didnt improve with stalevo.....infact ı think he seemed worse due to that 'pokerface' expression...when he is not taking the pills he does feel sleepy alot but his facial expression is allright.. ı dont know what to do?
Steph
You say your father is elderly, I guess that means in his 80’s. You are feeling a heavy weight of responsibility to do the right thing but the final decision is really up to your father iisnt it, unless he has some dementia problems. It is really great you are helping him, we all need an ally. I just hope responsibility for his health doesnt become all your responsibilty (unless he is mentally unwell).
Steph there is no right way, every neuro will have different experiences that influence their decisions. All three neuros have agreed your Dad has PD. and Im picking you Dad thinks so too so I wonder what makes you doubt it, What do you need to know to be convinced.?
If /when you accept the diagnosis I think you would do well to chose one neuro you feel you can trust and stick with them.
Your father is stiffness dominant. The meds often dont work as well as they do for tremor dominant pd. My older friends with stiffness all have the mask face even on meds.
Sinimet (or madopar) is the best treatment, the gold standard and if I was helping my elderly Dad thats what Id start him on.
I found this info which I thought was very good. Hope it is of some use..
steff give him the madopar .dont wait as hes hurting.dont question the doctor give it to him at least 3 times a day,,regards
• in reply toMotherfather
Thank you for this, Thanks
Sinemet/Madopar works the best for me. I am elderly, have more stiffness on one side, than the other, and have no swing in my arm, am slow, been diagnosed by 3 doctors. I did have tremors, but not as much now. My medicine has been increased, in dosage, as some of the symptoms have gotten worse. I have a lot of numbness in my face, so it is like a mask. Sinemet can only help so much. It is known as the Gold standard, in terms of treating PD; however, it is not a cure. Each PD patient is at a different stage ( or point ) in their PD journey. The first 5 years for me, symptoms were milder. Now, in the more advanced stages, Sinemet helps some, but it does not completely stop the symptoms of stiffness, the mask, arm swinging etc. The best way to understand that, is to study the process of neuro-degeneration, and to note that it can progress in different ways with each person, which is why it is notoriously difficult to treat. Perhaps upping the medicine dosage would bring more relief to your father. A more understanding and caring physician, whom you could relate to might be needed, too. That I cannot really comment on too much, not having met your Dad's doctor's. I just know that a patient/family/doctor relationship should be on good terms, in order to provide the best care for a patient. Living with PD is very difficult, and it has been my experience that having the right specialist can make all the difference, for the patient. Good luck, and I hope this all works out to yours and your Dad's satisfaction.
• in reply toddmagee1
Thank you so much for this, Thank you very much for your kind message and kind wishes. I thank you very much
I live in New York State. As long as you are listed on the person's Healthcare Proxy, you can speak with the doctor about the person. I don't know where you live but I suggest you ask your personal MD how you can do this legally.
Another way is to ask your father if you can accompany him on his next visit. If he won't let you into the exam room, you can slip a note to the nurse or doctor listing your concerns.
Good luck
• in reply towifeofparky
Thank you so much this, I will try to do so, best of thanks
wifeofparky• in reply to
best of luck to you
Steff, i got your email, but i still had to respond here. Can you write directly to me on hotmail and leave me your email ddress?
Parkinson's drugs don't cause dementia, Sinemet is a life saver for my husband (carbadopa/levadopa) the only problem with him is if he takes too much of a dose he starts getting hallucinations.
• in reply torhyspeace12
Thank you so much. I would like to write to you on hotmail what is your email address please?
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