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Parkinsons.... Experiences please?(22 Posts)
My Granny was diagnosed with Parkinsons about 5 yrs ago. She is 83 and now has to live in a residential home as she keeps falling over and injuring herself.
Recently the illness has started to affect her eye muscles. She can no longer look left or right and her eyelids are starting to droop. I don't know much about the illness other than it affects every muscle in your body. I was wondering if anyone could give me some advice/experiences?
I really don't know what to expect next and its such a shock everytime I go to see her.
She iw wating away and is so miserable.
Can anyone give me an idea of what the signs are that the illness is in it's final stages? My Mum goes to see her everyday, but won't talk about the fact that my Gran is dying. Is Parkinsons actually terminal???
This is awful.... but I look at her and her quality of life and I think she is suffering so much. I love my Gran, but sometimes I wish it was all over for her and she could go be with my Grandpa and her Brothers and Sister.
I don't think Parkinsons is terminal, but sufferers of it are likely to go and get other illnesses, i think Dementia is one of them.
Find out if your area has a parkinsons nurse, you may be able to arrange for the nurse to visit your gran whilst you are there so that you can get all your questions answered by a professional.
Medical staff are their for the relatives as well as the patient iykwim.
Sorry to hear about your poor gran.
Fran1 - She goes to a Parkinsons Clinic, but I work so go visit her on Sundays or evenings. My Mum knows alot about it, but just switches off and changes the subject if I ask.
I'm sure the illness causes nasty chest infections as the person is usually quite immobile. I had heard that it can be the chest infections that cause death. My Gran is getting alot of chest iinfections at the moment. I'm torn between the feelings of wanting it to be over for her and panicking that she might be close to dying. I can't imagine how my Mum feels watching her Mum go through all this.
Nobody can say how long she has left. Its normal for you to have the contradicting feelings you are having - no help i know, but very normal.
I work in the community with elderly, sick/disabled people. Some weeks i'd visit people and think - they would not make it to my next visit, then they'd have a big change around and spend another 6mths appearing pretty healthy (considering).
All you can do, is do what you are doing, which is visiting, making sure she has the best care and the best possible quality of life in such awful circumstances.
My gran has Parkinsons (and is a similar age to yours).
She's not in a home but she should be. She's always falling over and can't really take care of herself. Her husband really refuses to let her go to a home and has managed to convince everyone who visits that he can cope. The Parkinsons nurse visits them occassionally and they have a support group that they go to.
My gran was diagnosed over 20 years ago. It's a strange illness because there do seem to be times when she is better - they are always changing her medication to try and find one that suits her but I think the side effects of these medicines can be quite awful.
At the moment she is suffering because she keeps getting vaginal prolapses because of horrendous constipation caused by the medicine - she then has to take super strength laxatives and these cause other problems. It really is one thing after another. Her speech has also almost completely gone.
She hasn't had any chest problems yet but I do think Parkinsons affects people in different ways. We were told it doesn't cause death itself but definitely shortens life expectancy - my poor gran, it breaks my heart to see her suffering so.
Fran, I take my hat off to people who do the sort of job you do. Sometimes I think we have got society all wrong paying bankers etc. top money when really it's people like you who deserve so much for taking care of such vulnerable people.
My wee Granny is at the stage now that they can give her no more drugs. They've tried everything and is now on the maximum dosage allowed.
I don't have personal experience, but worked in a nursing home where a few of the patients had parkinsons. I just wanted to add that it isn't all bad, two of the patients I cared for were very physically disabled, but never developed dementia at all. There was one lady who I particularly got on with, she had such a bright character, a great sense of humour and despite her condition she did have a good quality of life. There were bad days where it would get her down, but on the whole she was happy.
Her biggest prob was balancign her medication, gettign it right to control the Parkinsons, but not make her too drowsy. As her condition got worse the docotr had to keep adjsutign the balance, but she was still very active when I left there and I think in her early ninties.
Thanks Kelly. But I really couldn't imagine my poor Gran living like this for another ten years. She really doesn't have any quality of life anymore. She can't go out anywhere with my Mum coz she needs help with the toilet (won't let Mum help her).... now she can't open her eyes properly or look side-to-side because of muscle deterioration. Just can just about sit up on a chair!
She definitely doesn't have dementia, she's still sharp. But her hearing is also very very bad and can only just speak.
What a horrible horrible illness.
Hi Toothache. My MIl's dp was diagnosed 6 months ago. He has declined rapidly in such a short period of time. Mobility is definatley his problem, especially stairs. Just last week he fell and gashed his head open and needed stitches. It is a full time job for MIL to acre fir him. He's not even 70 yet
You're right - it is a horrible disease.
Do the residential home help with actvities etc.? Parkinsons is very disabling, the lady I looked after could barely walk, but was active in other ways. She loved bingo (with help), socialising, music etc. I think you just have to look into what she can do to make her quality of life better.
I do know abotu the final stages of Parkinsons if you want the information, but I am worried abotu giving TMI.
Kelly - I'd rather know the truth, if you could tell me then that would be helpful for me. My Mum is burying her head in the sand so I'd like to be informed.
And yes she plays Bingo once a week, and has her hair done.
That's good to hear about the bingo. I will post again tomo with some info, jsut got home and need to feed the twins right now. x
Parkinson's doesn't necessarily involve dementia -- in fact "classic" Parkinson's doesn't at all. It does tend to be used as an umbrella term for a number of disorders that have similar symptoms but slightly different causes and prognoses. Some Parkinsonian conditions do involve dementia but some (I believe most) don't.
My father has Parkinson's but is only 64 so his is termed "early onset" -- he was diagnosed eight years ago and is very much worse now than he was then. If he slightly loses his balance he can't recover it so falls and can't get up, he often freezes in postition and has to be helped up, he has continence issues, and so forth. But at the right time of day when he's at the right point in his medication cycle he can be quite sprightly. And he certainly has all his marbles.
I believe that Parkinson's tends to shorten your lifespan becase it makes you more vulnerable to other things, but isn't terminal in itself.
Has your Gran or your mum contacted the local branch of the Parkinson's Disease Society (http://www.parkinsons.org.uk)? They have an active programme of meetings and activities. My father's got very involved with his local branch over the years.
My mum has parkinsons, was diagnosed 10yrs ago when she was 45 (which is quite young relatively speaking). It IS shocking how much they can change when you haven't seem them for a while.
Toothy - I'd DEFINITELY recommend seeing if they can change her medication. New drugs for Parkinson's are coming out very often, and because it's such a broad ranging illness what works for one person won't nessecarily work for another - and the 'combinations' of pills all have different effects to,
Is she getting help from outside? My mum now has a carer come in daily for 2hrs each day, they help do her hair, prepare (but not cook) meals, and she's got lots of 'gadgets' (as she calls them) to help her do various tasks on her own.
My mum has got a lot worse in the last few years, she now has a very bad stoop, and can't lie flat on her back without being in agony, the shakes are reasonably under control now (after her new Dr. changed her meds), the worst thing she finds is how long it takes her to do stuff, it really does slow them down.
If you want to CAT me I'm quite happy to have a chat about it more if you'd like. It's heartbraking I know - 10yrs ago my mum was still walking up mountains with me, now she struggles to walk from the kitchen to the living room
Toothache - you mentionned that gran was getting lots of chest infections - has she seen a speech therapist to asses her swallowing?? If she is getting recurrent infections her anti PD drugs may not be as effective not only because of the infections adn high temperatures but also as antibiotics can interfere with the way her drugs are absorbed. Is she getting her meds regularly because often PD people need drugs at funny times that do not always coincide with the nursing homes drug rounds??
Leave a message for your Gran;s PD nurse, they will call you back if you have any concerns, also have you tried the PD society website www.pdsociety.org.uk - lots of information with various other links.
Hope this helps.
sorry wrong web address - www.parkinsons.org
Also if the residential home that your gran is in is not used to have someone with Parkinsons the PD nurse may be able to do a little talk for them or something...
Chest infections can be a problem of immobility, but also swallowing can be difficult due to not only weaker muscles, but also the stooped posture that people who have had PD for a long time can get. I mentionned the speech therapist, but has she seen a physio as well?? These things can all help if not make her better, atleast aid her comfort.
Thanks so much everyone!
QoQ - My Gran needs 24 hour care now so all her meals are cooked for her. She needs help bathing etc too. She really doesn't have any independance, she's beyond gadgets as she can't really hold anything in her hands (arthritis!).
She has had a terrible stoop for years.... long before she was diagnosed with Parkinsons. It's something to do with a calcium deficiency. She can only walk a little bit using a zimmer, but most of the time she is wheelchair bound.
As she is 83 and very very ill I think they have tried just about everything drug-wise to help. She gets terrible side-effects from drugs so they have probably decided (or perhaps SHE has decided) that she is too ill now to try something new.
I will find out if she sees a Physio. I know she goes to a Parkinsons Nurse once a week.
Thanks so much for all the info, it really helps.
It's good to see you've managed to get some info and good links. What I know is -
Parkinsons can be broadly divided into five stages. The first two areearly onset, and limited symptoms, the third is loss of mobility. From ehat you have said, it sounds as if your Gran is at stage 3 or higher. Stage 4 sees movements becomign far more rigid and slower (bradykenesia sp?) This si the stage where most perople lose independance. Tremors may lessen or dissapear.
The final stage is where the patient loses all bodily control, usually requiring 1to1 care. The disease can literally efeect everything, swallowing, bladder/bowel control, eyes, etc as it takes control of all the muscles.
However, Parkinsons in itself is not terminal. It does however excerbate other illnesses, so usually the end comes about due to a secondary illness. It can be hard to believe, but even in the very final stages of parkinsons, a patient may live for many years to come if they are otherwise healthy.
Roughly one third of patients with parkinsons develop dementia at some stage. Bearing in mind 1/3 of over 80 year olds develop some form of dementia this figure is not massively high.
Other less obvious symtoms you might like to be aware of (don't always occur) are tiredness, confusion, depression, skin problems, and memory problems. It can be easy for patients in nursing care to lose touch with reality. Frequent visitors, photographs, talkign about the past etc. will all help reduce confusion and disorientation. (i think it is called orientation therapy or soemthing)
Treatment wise, there are lots of different drugs available, it is a matter of finding what works, and balancing the side effects, most commonly shaking/tremors. A lot of research is beign doen into parkinsons, and new treatments are being investigated and trialed all the time. Surgery may also be an option, but is not suitable for all patients.
Holp that helps, and I would jsut advise that you push for as much help as you can for her, as parkinsons can go on for a long time. She can be referred to a neurology, speech therapy, occupational therapy, physio, diaticians. Parkinsons is a horrible illnessm, for your gran and all your family, I wish you all the best. x x
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