What can we expect at this stage of Parkinson's disease?

23 answers | Last updated: Nov 09, 2016
M.hartzell asked...

My Mother has had Parkinsons disease for about 6 years now and I would like to know what the stages of this disease are. The visiting nurses have commented that she is on the verge of needing hospice care so I guess Im just wondering what to expect now. She lives wtih my husband and I. She has really good days and some not so good days. She has been having hallucinations, "stuck foot," whisper voice, loss of appetite and weight loss also. She will be 82 years old in October. Any help will be greatly appreciated. Thank you!


Expert Answers

Graham A. Glass, MD, is the deputy director of the San Francisco Parkinson's Disease Research, Education, and Clinical Care Center (PADRECC) and an assistant clinical professor of neurology at the University of California, San Francisco (UCSF). He completed a fellowship in movement disorders at the Mayo Clinic.

Although we "stage" Parkinson's disease for research studies, this often doesn't help predict how patients will progress and what type of assistance/living situation they will need. From your description, it sounds like she is at a later stage of disease and may have some cognitive involvement as well. Although we can never tell how things will go (as doctors are notoriously bad at prognosticating), typically when one enrolls in hospice, the expectation is that everyone thinks that the patient may have 6 months or less and that the goals of care are comfort and compassion. Working with a movement disorders specialist to make sure that her medications are tuned up (as meds can cause or worsen hallucinations) could be helpful and also may help you and your family prepare for the future.


Community Answers

Donnamills47 answered...

The person I take care of has had Parkinsons Disease for 29 years, and he takes 21 pills a day every three or three and a half hours throughout the day and is 69 years old now with many of the symptoms you mentioned, so six years, unless there are other health issues, is not that long. Not sure why hospice would be needed for a person who has only had Parkinsons for six years?


M.hartzell answered...

Ive been told that the older the person is at the onset of Parkinsons, the more rapidly it progresses.She has gone down hill very rapidly, from living alone 6 months ago to now needing help with everything, and some things she can no longer do at all.


Emoji answered...

My mother's Parkinsons' symptoms began about age 88 or 89. She chose to enter assisted living at age 90. She quickly went from fright at night (Sundowners) to more prononced symptoms like "stuck foot," confusion, hallucinations and inability to use eating utensils. She was perscribed Levodopa and within a week, her symptoms were almost gone. This lasted almost a year or more but eventually the symptoms returned with a vengence. She then moved from assisted living to a nursing home. She became completely unable to walk, bathe, dress or feed herself. She lived in a world completely in her own mind wrapped around the constant hallucinations. I brought her to live with me last year and she became more and more removed from reality. She didn't know me and I don't believe she knew where she was. She aspirated and died of pneumonia in December of 2010 at age 95 (one month short of 96). This was approximately 5 years from onset. So I guess different people progress through the disease at varying rates.


M.hartzell answered...

:-(, I know exactly what you are talking about. The sundowners, stuck foot,hallucinations,everything you described about your mother. The lveodopa seemed to work for a while and now it seems that she is getting much worse. It seems also that when someone else is here sitting with her while I am out she can do most things for herself. Doesnt complain about pain, legs being tired and can make her walker go unaided.As soon as Im home and the help has gone shes back to needing help again.I have 4 siblings and only the help of one, so i am getting worn very thin with the 24-7 care plus a full time job.


A fellow caregiver answered...

Are you sure the diagnosis is just Parkinsons or could it be a parkinsonism called Lewy Body Dementia. My husband was originally diagnosed with just Parkinsons but a motion control specialist, Neurologist diagnosed him with Lewy Body 4 years ago and after all the research I have done I feel comfortable it is the right diagnosis. I go to support groups for Parkisons and am constantly trying to learn more about the disease. As far as length of life, I have learned one thing in trying to study more on neurology==there are no answers! Everyone is different and "we don't know" is the answer to almost all my questions when I talk to the neurologists.It is obvious to me there is not enough research yet to answer all our questions and each patient will handle the disease differently.


M.hartzell answered...

Anonymous, I too have been honing up on Parkinsons information and I also think it might be Lewey Body Dimentia. Did the neurologist perscribe different meds for this or are they the same as for the Parkinsons? I will mention this at the next visit and see what he says. I have found that most patients with P/D dont actually die from the disease, but from either asperating , phenamonia or somrthing else.How is your husband doing now? I give all caregivers much credit, its not an easy job, no matter what anyone says.


A fellow caregiver answered...

M. Hartzell, you are correct, complications from the disease usually cause death, and that includes aspirating, pneumonia, falls from the balance issue etc. My husband had to go into a memory care unit after I cared for him for 5 years at home. He had a severe stroke and it brought the lewy Body on full force along with agitation and more halucinations and delusions. Confusion and being lost is a symptom. He is in perfect physical health, will turn 80 this year and until he was 72 had never been in a hospital in his life. After a lifetime of excellent health we learned he had Hydrocephalus then a misdiagnosis of Parkinsons Disease, and after 4 neurologists, finally the correct diagnosis of Lewy Body and Hydrocephalus. It is rare to find anyone with 2 neurological diseases, He is currently shunted for the hydrocephalus, but nothing can help the Lewy Body especially following the stroke, that's what took him from home. Regarding meds, he takes parkinsons meds (Sinemet) as he does have a tremor and had an intermittent benign tremor most of his adult life in one hand. He also takes Alzhimers drugs-Aricept and Namenda as they are the only drugs on the market and Lewy Body Dementia is the 2nd largest cause of Dementia today 2nd only to AZ.


Keaustin2012 answered...

Unfortunately Parkinson's disease affect people differntly. My mother has had it for over 30 years. If you have the opportunity for help or assistance, take it. I help my dad take care of her, but he's in denial in the amount of care she needs. If you have the resouces to take advantage of some help, take it! My dad is old school - my mom took care of everything - I've taken up the slack - cooking, cleaning, hostest of the parties... I have 2 siblings that haven't help at all! Sorry, but I'm venting today - my mom had an off day!


M.hartzell answered...

karensagolfin, I know exactly what you go through, I have 4 siblings and get miniscule help from any of them.I have days that I need to vent also, it helps me get through this! People say that we need to take advantage of the help out there, but my Mother has too many assets to receive any help and doesnt make enough on SSI or retirement to hire someone full time.I have hired someone to sit with her so I can keep my full time job.She is to the point that she is calling me Mommy, and verious other family members names.I wish you all the luck with the caregiving of your Mom. Sincerely, M.Hartzell


A fellow caregiver answered...

My father had Parkinson's for 23 years and did not experience hallucinations until the last 5 years. He was 80 when he passed away.

One critical "lesson learned" was to NOT take a anti-hallucinigetic drug (Serequel) !! He had a terrible reaction to it and almost died. This was given to him by a hospital that has a Parkinson's Center and excellent doctors. So you will need to stay informed !! I do agree with the other posts about adjusting the amount of levadopa (Sinemet). Medication adjustments are a fine art and way of life with Parkinnsons

Re:eating. My father was OK with his eating/swallowing but his diet was supplemented with Ensure milkshakes to ensure adequate nutrition. At one point (after the reaction to the anti-hallucinigetic drug) he was on a feeding tube. However, he recovered to the point where they could remove it which is unusual but can happen if eating is a problem.

Re: stuck foot. Try music. We used to hum march tunes which would un-stick my father's feet. There are a few studies release on how music helps Parkinson's patients so that trick is supported by some research. The other trick we used is to put our foot in front of his foot so he'd have to step over it. For some reason, he never had a problem lifting his foot to go up stairs so following the same principle, he'd get unstuck by lifting his foot to step over our foot.


A fellow caregiver answered...

Drugs and effects are different with everyone. My husband is on seroquel and it has been a wonderful drug for him, lessened the horrible delusions and halucinations. Everyone is different. My husband is in perfect health at almost 80 but mentally is so confused and out of it most of the time. He could live a long time as can anyone with the disease, but swallowing and pneumonia are 2 things to watch out for along with falls, a broken hip can hasten death. My husband cannot stand anymore or walk but again, his health is excellent. No one can predict the length of life, but hospice is just for those in the last months of life. Don't understand how anyone can say to get hospice involved unless there is another health issue besides parkinsons or Parkinsons with Lewy Body.


M.hartzell answered...

Mom has been falling quite a bit lately, thank God she hasnt broken anything yet. Lots of brusing. We have to watch some of the meds for the halucinations and delusions because she has glaucoma too.She is getting very defiant with me, not wanting to use her walker, yelling at me, saying her stuff is coming up missing and accuses me of lying to her.I get no help to speak of from my siblings and am at my ropes end.I hate the thoughts of doing it but I am contemplating putting her in a home.My stress level is soaring through the roof and Im constantly eating something.Thanks for your imput, its greatly appreciated, and nice to talk to someone walking in my shoes.


A fellow caregiver answered...

Funny or really not funny, I have gained weight SINCE my husband went into a Memory Care Unit! Before, I swear I never had time to eat anything and lost weight for 5 years in a row. Now it is different I have so much more time on my hands and so much loneliness and guilt for him not being here. When the time comes you will know it--for us, it was a stroke that took his legs away, he could no longer stand at all and that made it impossible for him to shower or toilet, or even go down just 5 steps to get to the car for dr visits etc. I knew then it was time and made the move to the care unit. He is better off physically is in the best shape possible and has so much care to help him do everything. He needs help eating, showering, toileting, teeth brushing, dressing everythings, even getting into bed from his wheelchair, he needs help. You will know when it is time and you either have to hire full time help or move him to a facility. You are not alone, there are so many out here dealing with this issue. Kat


A fellow caregiver answered...

There is a great website-----here on Caring.com it is "caring for a spouse that has dementia". It is a group of incredibly caring people who are dealing with various diseases that cause dementia--not all spouses, you might find interesting. They give so many helpful hints and info regarding the world of caregiving. Kat


Jmeldz answered...

Hi guys, it's been a very sad year for me with my dear mother passing with pancreatic cancer and dad being diagnosed with Parkinson's Dementia. Dad had a fall a couple of months ago and didn't press his emergency alert button and ended up in hospital for a month or so. In this time he decided he did not want to go back home as he didn't feel safe on his own. I am an only child and carer for my father, I gave up my full time job when mum was dying, and noticed that while being there for mum that dad just wasn't right. He has gone down hill since mum passed and has opted for permanent care in a nursing home. He didn't react very well when first there and became aggressive and wondered why all of the other residents were in his house. After over 2 months in a mental health hospital with them changing his medication, he returned to the nursing home. He now cannot walk and his dementia has worsened. I hope that he will be ok back there but I have my concerns that because he's won't be getting the attention he was in hospital his aggression may return. I am doing all that I can for dad and finding the financial pressure of having time away from working and a child with a learning issue and private schooling quite demanding. Im just wondering how you guys cope with the guilt of having to go back to work when a parent is so ill with this terrible condition. It makes me so sad that dad has gone down hill so quickly since mums passing. I feel hopeless that I can't do any more for him than what I have done. The guilt of needing to return to work and watching dad's demise is emense. Needing some guidance on how things usually pan out with demensia and parkinsons combined. xxx


Erin98d answered...

My mom passed away a week ago. She was 83 and had Parkinson's. We started the hospice program in June. I was her 24/7 care giver for the past ten years. I am not a doctor or expert, but would be willing to share my experience and self obtained knowledge with anyone.


Kirsty reyes answered...

I came to this site for help in understanding the Parkinson's progression. I am so glad I found it. My Mother came to live with us about a year ago, when her husband passed away. She was diagnosed with the disease about 5 years ago. When she came, she did nothing but sleep, hallucinate and drool (and she still had tremors). I told the neurologist that she seemed much better in the morning before her pills and he took her off all her Parkinson's meds and he put her on a memory drug and although she still has tremors (not all the time) she is awake and we can have conversations, I describe it as a rollercoaster, some days we talk about relevant news and others she has no clue as to what is going on . I am not fooling myself into thinking she doesn't have Parkinson's, she will eventually need to take the drugs again. I just think she was over medicated. Not anyone's fault, as I don't think the doctor was given all the info needed. We still deal with some hallucinations, drooling, confusion. However she is awake a lot more and all of these symptoms are lessened with less drugs. Mum seems to be very sensitive to drugs and they affect her tremendously. My husband and myself are her primary caregivers and my brother lives about an hour away and he comes a couple times a month to watch her so we can have a break. I don't know what I would do without my husband and brother. I get tired, I get burned out, I get sad, and then I pull myself back up and know that I am doing what is right, and that I am one of the lucky ones. My goal is to give her the best possible, fullest life, for as long as possible. I love my Mum. I pray everyday that she feels safe, secure and loved for as long as she is with us. This is by far the hardest thing I have ever done.


A fellow caregiver answered...

I want to say that there is so much going on in our lives--less than some of you. Won't get into telling the whole nine yards here, but just want to say that for my 86 yo mom we have found that the instructions and support from a PT have been really helpful. First this specialist was able to eliminate (for the time being) my mom's vestibular issues, her balance as far as it origniates in the inner ear.

Now we work on strengthening the muscles my mom needs to do the various movements, as well as to address her daily hip pain. She is so lucky our clinic has an SAS--where she can get the free feeling of walking with a steel suspension system on an overhead run. I wish every neighborhood had one in their community center! This has helped her fear of falling and constriction of movement a lot.

She gets stuck feet--festration--we learned is the name/. Slapping on a surface or my thigh, to make a moderate paced beat helps. The singing someone else mentioned helps and cheers us up. We often do need a lot of cheering up. ( I have heard that depression makes PD worse.) If I get her a metronome to have around, that's supposed to help too. She hates the beeping sound that our PT has, so I'm going to look for a used wooden one.

We took a walk last evening with her walker (3 wheely one from Goodwill Medical) and I made a little chuck sound for the beat and she walked really well.

I channel my cousin who was so good with our grandmother when I realize I've been short tempered. I bet most of you never go there. I know I have a lot of work to do with my own needs and feelings in my spare time, when she is napping, after she's gone to bed.

There is an array of medical alert type bracelets. One of them signals a fall. I started to compare them--there is a great article in Consumer's Report or AARP magazine. The one with gps that can go everywhere shuts down when the cell towers lose power. I remember 9/11 and that that did happen out East here.

I have gotten some tools to help her--a dressing stick, and a couple of different tools for getting in and out of our van. The jitterbug phone, like tv remotes, seems impossible for her to manage her fingers pushing the buttons. Without any OT to lead us, I've tried to work on these with her. OT time uses up Medicare so I will probably keep at it till she gets with one by her coverage.

As far as longevity and ability--I do think that working with a PT (if you can get your parent to work with you--mine can be quite dispiriting about this) and moving as much as possible IS really therapeutic and makes improvement, I don't know if that's neurological as well as physical but I guess so. I don't want to disparage those whose loved ones are beyond this possibility. Mine would seem to be, per her report to me, very often, but any time I succeed in getting her to let me sign her up for PT evaluations and appointments, she is much more responsive and optimistic.

Has anyone else heard this? If you are strengthening muscles they have the unique ability in the body to send out a signal to all of the organs of the body--to tell them, 'Hey, I'm doing something important here, I need you to operate at your optimal best.' (Where did I read this? Sorry I can't recall, That all of the organs, no matter what age will behave better, including the mind. What results can happen, I do not know that either.

I hope this is helpful. I came here to get some idea of what stage we were in here, and to understand what I might expect as far as personal relations with my loved one who has PD.


Monikatoronto answered...

I came to this site to see feedback about PD and related illnesses. It has been such great information and really makes you feel like you are not alone. My father has had PD with dementia for 5 years. Two weeks ago he broke his hip and had a very successful surgery. Unfortunately, his complications are keeping him from recovery and any rehab hospital possibility. He has very quickly developed swallowing difficulty and won't eat the horrible blender food at the hospital, UTI and is definitely confused more often. My mom and I are watching him waste away and we feel helpless because he won't eat - hates ensure and boost and anything else we are trying. He previously lived at home with my mom, was mobile, ate by himself, dressed himself etc. - This all seems to be so far away so very quickly. Thanks to everyone for posting.


Rosemary44 answered...

What I have found out about being a caregiver for these last 8 years for my husband has been by trial and error. Mostly error. But then, I rebound to find an answer. So far the best advice I can give anyone who finds out they have Parkinson's is to get to a gym. Crazy as this might sound, there is something about physical exercise, a good 40 minute workout everyday, except weekends, that seems to work to keep their brain functioning and of course, muscle tone.

I have gone through it all. Cleaned up messes that I can't believe I'd be doing, Each time I swear it will be the last time, yet I change his meds, get him to the gym and watch a different man emerge from it all. The Drs. are always trying to add meds. One Dr. put him into a hospital for 20 days over the added-on Azilect, and entacapone. Totally overdosed.

What I did, was just add a half carba-dopa to his regular regime of 5 pills a day spaced 3 1/2 hours apart. Got him to the gym and suddenly he could walk on his own again. I saw that wear off, and added another half. He started falling, so now I'm at a third half during the day. But, he wasn't working out everyday.

Normally, he can't talk in whole words, after a workout, during the entire day, he talks like you and I. He doesn't even realize he's talking correctly.

He doesn't have tremors, so to find out if the pills are wearing off, have them raise their arms in front of them, and see if you spot a tremor. That's a telltale sign that maybe there is too much time between pills, or they need a half more in that time period. In my husband's case, it's the falling that tells me it's time to adjust his pills and get to the gym. Yes he hallucinates, and the Michael J. Fox foundation is funding and asking for volunteers to be part of a drug trial to see if they can come up with a answer to that problem. I listen to their monthly webinars on different problems a PD patient goes through.

One more thing, does you loved one have those screaming leg muscle cramps during the night? Make one of their pills to be late at night before bedtime. The drug is wearing off. Lot's of fluids during the day helps too, and magnesium at bedtime. Usually, it's drug wearing off. My husband's last pill is at 10PM. No more leg cramps. What a horror they are.

Singing out loud to any song is helping also. Not so much for me though. Whoa.

I hope this helps. It's all trial and error and membership to a gym.


Rosemary44 answered...

I meant to add: When they start and do a 40 minute workout each day, they may become overdosed. Yes, working out helps that much. So you may have watch for that to happen and reduce the dosage.


Soufdriss answered...

This has definitely been a great blog to read for inspiration and advice. I never expected to see my father who was always a very confident, independent man be reduced to the shell I see now. He was diagnosed with Parkinsons 4-5 years ago initially but was in denial about the diagnosis and went from doctor to doctor trying to get different results but when one would say I dont think its Parkinsons, others would say it is. We have accepted that is and he currently takes Cardibopa, but recently his hallucinations have increased, he constantly thinks people are in his apartment, Ive found his cell phone and house phone hidden in drawers, He was given both the Rivastigmine Patch as well as another experimental drug to help the hallucinations but its seems the hallucinations have just gotten worse. I also worry that he is either under-dosing or over-dosing on his medications. It's truly one of the hardest things my mother and I have been through and we're thinking of looking at assisted living because we both feel inadequate in helping him.