Eating

[Connie18]

Does any one have problems eating and drinking! When off..

[M1tz1]

These problems can occur with Parkinson's. It is a good idea to get your doctor to arrange for you to see a speech therapist (yes!) for help with using the muscles of the tongue and the throat, especially if there's difficulty swallowing. There are also examples of appropriate exercises on YouTube. Look up Swallowing Difficulties in Parkinson's.

[999---666 in reply to M1tz1]

yes, yes, and i'm struggling with my appetite alone. i'm told levocarb suppresses appetite. besides that, i don't think i have pd! i think i have vascular pd. no tremor, i even hear a squishing sound when i turn my head! balance, speech problems illegible handwriting quite severe, (slightly improved, on levocarb, presumably) lower motor problems, for most part. most significant my arm on the affected side, improved, spontaneously; the only beneficial effect of levocarb, i assumed.

anybody venture their opinion, experience?

[Connie18 in reply to 999---666]

I have read this after your last reply about educating myself. Your issues sound very similiar to me and I have wonder whether i have PD many times . I will,look up vascular pd

[Connie18 in reply to 999---666]

No I haven't got vascular PD

[Hikoi in reply to 999---666]

Ive not heard or read that lev/carb suppresses appetite? Quite a number ? about 40% of people with pd dont have a tremor.

Hope you get a diagnosis soon

[999---666 in reply to Hikoi]

he says i have pd, but i don't think so. he also said i lose my symptoms with medication, but not so. i am falling down drunk on these pills. fared better on 1 1/2 pils. started reduced dose today. see what happens. he's a joke.

[Connie18 in reply to Hikoi]

Yes Sinemet can give you anerexia it's a known sideceffect

[999---666]

google atypical pd. themselves say 68% pd x are incorrect. 58%? something like that. a lot.

[Hikoi]

Yes connie, i find it difficult to breathe and drink when off. Similar with food. Also taking meds is a challenge - i manage better with something slightly ‘thicker’ than water. I have to stop after each mouthful to get my breath.

Is this anything like your experience?w

[999---666 in reply to Hikoi]

sounds like hell. are you an older person hikoi/ soundes more like als to me.

[Hikoi in reply to 999---666]

Its just shortness of breath. My respiratory muscles dont work as effectively when low on dopamine. When Im on i could down a glass of water in one go. When off i have to take one sip at a time.

Parkinsons is not for the faint hearted.

Actually I havent researched ALS. How does it present that suggests I may have it?

[999---666 in reply to Hikoi]

saw a movie on aptn (those people eat o lot of fish contaminated with mercury) she was in wheelchair towards the end, speech was impcted but she manaed, then her right toe went into lotus form. bedridden she chose to force her throat closed just before that muscle collapsed and suffocated her. strangulation is preferable to suffocation. she did this because she wanted to avoid resuscitation that they are prone to do in hospitals. tear jerker.

i have impression it attacks autonomous muscle system. things thatb we do automaticly to stay alive. breath, heart beats without our control, wat else?

[Hikoi in reply to 999---666]

Hm a diagnosis based on viewing one movie. I dont think that is a good idea.

[Connie18 in reply to Hikoi]

I'm not quite as bad as you but I'm not far off. I want to try coming of meds completely as I need to know what is side effects and what iis condition. I have tried but have such bad face and throat dystonia brought on by Sinemet that I can't make it through one day, I keep reading about these drugs holidays they used to do with PD patients and I don't know how they managed. But I feel so ill on Sinemet and I've only had it 5 years

[Hikoi]

It is confusing to know what causes what. You blame the sinimet for your dystonia and it may be the problem but it sounds like you are describing off dystonia which is relieved by sinemet?

There is also on dystonia caused by sinemet but if you are reluctant to stop meds because you get dystonia wouldn't that mean it is off dystonia and Parkinsons is causing the dystonia?