What is the normal years with Parkinson's ? My husband has had it for 20yrs. He does use a walker or he falls. He chokes on even water.

[0178]

I never know what each day will bring. What are these stages everyone talks about? Our Dr. Never says what stage he is in.

[Hidden]

Hi 0178

This forum is mainly about those suffering from Progressive Supranuclear Palsy (PSP) and CorticoBasal Degeneration (CBD) and not Parkinson's. PSP is called an atypical Parkinson's but is NOT Parkinson's disease. There is another forum dedicated to Parkinson's sufferers.

Many people live the same length of time with Parkinson's as healthy people. However, complications like aspiration pneumonia often cause early death. Some suggest there are about 5 stages, and the final stage is when the sufferer is wheelchair or bed bound (but there will be variation in such stages).

All the best

T.

[cabbagecottage]

Have you tried using thickener for drinks especially . I use Thick and easy , it's about eight pounds a tin but can be added to the prescription .Even using a small amount helps .

I even put it in wine or lager sometimes just a sprinkle helps . he also uses a straw .

I bought a " Hands steady cup " It had a lid with a small hole which can be used to drink but I place a straw in it . It helps steady the straw . If you Google Hands steady you will see the principle . It's a bit expensive though .

I believe the consultants use the term stages but if he is anything like my husband it's not that black and white . My husband is eighty and eventually diagnosed when seventy. We have had and gets lots of hIghs and lows .

[wifemo]

Hi cabbagecottage -

Just out of interest, Tony was advised not to use a straw because of the danger of liquid being directed to the back of the throat and going down the "wrong hole" - to avoid the dreaded aspiration.

The Speech Therapist gave him a "nosey cup" - the cutout meant drinking more comfortably without tipping his head back. Available at mobility aids outlets, but I didn't find a version as good as the SALT's.

Mo

[jimandsharynp in reply to wifemo]

We used a straw for a bit. I controlled the straw and would pinch it off so that only a minimal amount entered my wife's mouth. She never coughed or choked because I didn't allow much to enter at a time. However, using the straw was much easier for her than sipping from a cup or glass. Jimbo

[wifemo in reply to jimandsharynp]

Hi Jimbo - how's it going? You sound as though that dark place is a little lighter.

Still have to reply to you about U3A - haven't forgotten!

Mo

[jimandsharynp in reply to wifemo]

Mo, life is tough at the moment. Lots of tears and grief but part of the game (been there before). Celebration of Life service for my dear Sharyn is this Friday. Hope I can make it through. Although I planned the entire event I'm sure it will affect me. Hope you are doing well. Keep in touch! Jimbo

[wifemo in reply to jimandsharynp]

Hi Jimbo - I'll be thinking of you.

Mo

[Hidden]

Dear All,

With regards the use of a straw, I think it depends on the individual and what functions in the drinking and swallowing functions are still working well for the sufferer. My father managed perfectly well with a straw and one of these adapted spout cups were dangerous for him. However, the so called expert professional did not really agree and the manageress of the home encouraged the staff to feed him with the cup. Therefore, eventually he became confused as to which muscles he needed to use and he got aspiration pneumonia. I think the person who has the most input in care knows best and you must go with this. These so called experts really are not so experienced with PSP and often just quote the general mantra they are fed in their training. In my opinion, this is why PSP sufferers need specialist nursing. Also the professional have to be careful what advice they give in case of complaints. There is always a risk of food or liquids going 'down the wrong hole' in the later stages of PSP anyway but I believed it was best left for my Dad to control the flow himself whist he was able and to keep to the same way, ie using the straw to re-enforce and to keep in practice those muscles which were still working for him. For my Dad, there was not a straw to be found in the nursing home so the carers, like robots, just poured the liquids into his mouth even though I pleaded with them not to and I provided straws. So there you go, I am so glad that he is 'out of it' now, what a nightmare.

[jimandsharynp in reply to Hidden]

There are special cups which my wife had. One only allows 5mm to be taken at a time the other 10mm at a time. The cup is manufactured in a way that limits the amount you can get out no matter how high you tip it up. Flow stops at a point. Expensive but it worked for a bit. Jimbo

[Hidden in reply to jimandsharynp]

Dear Jimbo, Yes, you can get all kinds of those tip-up kind of cups, but for my father, it was that sucking reflex from the back of the tongue, in fact the action of those muscles against the roof of the mouth that I was trying to preserve because they are used too in swallowing solids, or semi-solids. Do and experiment with yourself and you may see what I mean. Hope you are doing well my dear. Anne

[Hidden in reply to Hidden]

Sorry Jimbo, just a quick addition, I should have referred to it as that kind of 'pumping action' I think is the technical term used,needed to suck up liquid etc. x

[jimandsharynp in reply to Hidden]

Anne, Actually the cup I'm speaking of doesn't require sucking. When you tip it up the metered amount flows out but it's only a small amount. I know what you mean about tongue usage. My Sharyn had a time chewing late in the disease. Food tended to come out from between the teeth and lips due to incorrect action of the tongue. Jimbo

[Hidden in reply to jimandsharynp]

Dear Jimbo, That is exactly what I am talking about. The struggle to keep that action of the tongue muscles for eating and chewing and in the formation of the bolus of food in the mouth which is prepared for the final swallowing. Straws are of course dangerous and useless when that sucking, pumping action has gone, then the cups come into their own.

[jimandsharynp]

The topic of "stages" is one of question. Since all these diseases are different for each patient there may not be a way to determine a "stage". How many times have we heard of patients with various diseases out-living the diagnosis of their doctors? It happens often. There are no guarantees of length of life for any of us. If you are in "stage" one you can have a fall, get a serious UTI, get aspiration pneumonia, or anything else and die IN "STAGE" ONE!!. I personally feel stages are over played and my wife and I didn't put any weight in them nor discuss them at any time during the disease process even near her death. Live one day at a time and be happy for each one regardless of the "stage" or state you are in. IMHO Jimbo

[zjillian]

I took care of my father who had Parkinson's Disease for over 40 years. He died when he was 99 years old! Only the last 3 years was he in a wheelchair and toward the end had a mild Parkinson's dementia. He ate well until his last year when he had a hard time swallowing. He was only bed bound for a month or so before he died. He died peacefully in his bed at home. He never went to a hospital and I always cared for him with help for bathing. In his last years he could no longer read and hallucinated, but that was probably because of his medication. Constipation was his biggest problems. He had a catheter and took a good deal of medication. But was easy to care for. It seems that there is much variation between individuals. I have seen very bad cases and then my father who was a very strong-willed person who would not give up. I think his attitude kept him healthy for a long time.

Jill