Advanced PD without a carer?

Hi, I'm interested in hearing from others with advanced PD who are living alone and trying to keep their independence. I'm wondering what proportion of pwp are in this group, and whether they're male or female, young onset or older onset. If you're in this group how do you cope with the daily struggle that is life? How do you envisage dealing with what the future holds? How do you cope with the common assumption that you have a carer?

28 Replies

  • Good question, It is funny that you assume they are working. My assumption is that if I can recognize the Parkinson side of you that A= you are not working or B= you are not working but have a very good boss.

  • I'm not sure why you think I assume they're working? I think it would be impossible for anyone with advanced PD to be working.

    By living independently I meant living without the physical help of others. Is this this where the misunderstanding occurred?

  • I don't know why but that word carer looks wrong to me. I thought it was spelled wrong but I looked up the word and you spelled it right but it is as if that word is not found in my mental library.

  • Hey Hal, he meant someone to care for the patient, not a career.

  • Wow ! did I miss interpret that question.

  • Now I know what happened- the word carer in my head became carrier. So when she spelled it carer my mind said oh career.

    I don't know why but the movie THE NEVER ENDING STORY just came to mind.

  • Sorry, I miss interpreted your last sentence. Most people know I have Parkinson's and since I have​ pretty good control over my physical abilities they don't know that I have it. My problem is that every body thinks​ Parkinson's is just a movement​ disorder so I get the " I think that you are using your disability to avoid having a good time."

  • Hal you are not advanced. You can still dress yourself? You can still make a Microwave dinner? You can still make it to the bathroom without soiling yourself? You can still comb your hair and bathe yourself? If so, then I believe your Parkingson's would not be considered advance.

    The question is a good question and honestly I believe the only answer is a nursing home.

  • I'm not sure who Hal is but I think it's a little disrespectful to make assumptions about what he can or can't do without knowing anything about his situation. This website is for people to communicate and share, to offer advice and support, to answer people's questions and to help allay their fears. It is not here to deny their symptoms and denigrate their concerns, and to tell them you know better than their own neurologist what level of PD they are at.

    As for what is advanced Parkinson's- I think if one's neurologist diagnoses advanced Parkinson's, as defined by levels 4 and 5 on the Hoehn and Yahr scale, then the patient is at that level.

    As for me, like many early onset people I have quite severe dystonia, so I cannot do calming things like yoga (I used to, and a Physio told me that it was very bad for dystonia). The painful and crippling effects are hard to comprehend on top of other PD symptoms.

    I spent a whole winter sleeping in my clothes because by the end of the day I was incapable of undressing. I am fortunate that I have a community rehabilitation centre nearby, and the OT has coached me on all aspects of self care. I wear clothes that are baggy and elasticated, without any buckles or buttons. I cannot wear shoes with buckles or laces. It has been a dreadful struggle but there are programmes such as LSVT BIG that can help. I have done everything in my power to stay mobile and independent. However, there are many nights when I am totally incapable of making myself a microwave dinner. There are many nights when I don't eat at all.

    I can only comb my hair with one hand, as the other is virtually useless. I can bathe myself with a hand-held shower, and that is a struggle. My back hasn't been washed for many years.I frequently cannot get to the bathroom in time to avoid wetting myself, and if I do, I cannot feel when the flow has stopped so often there are drips and dribbles everywhere. I hope that's enough detail, I do not feel like offering any more, though there is plenty. I think for those who do not live alone, it is almost impossible to comprehend what that might be like.

    I am nonetheless convinced that we we can influence the progress of PD to a point by adopting every intervention available. However, the point does come when coping alone can be overwhelming. Optimism is vitally important. I hope that Hal, whoever he is, will take hear from this.

    I wish you well Theresa and hope things turn out ok for you and your husband. Hopefully my explication will cause you to reflect on Hal with more compassion. You can check out Hoehn and staging on the Internet.

  • YEA! you tell her Lisl and where is my playground?

    nothing to do with PD but a good pallet cleanser

  • Ha ha! :)

  • Lisl -You expressed yourself very well, and I completely agree with you. I wish there was some way that you could have someone help you, at least help with making you some food and help a little , to make life a little easier for you. It must be very difficult for you each day. Is there a family member, or friend, or Doctor, or Social worker, that you could talk to about your needs? We are here to support fellow PD sufferers and to communicate. It' a good forum, that, probably, people coping with PD, appreciate greatly! Thank you for sharing this! I trust you will find the help that could make your suffering a little easier to deal with.

  • Hey Lis1 -- Hal is 'Serenity_finaly-1' and I know him well. I did not make any assumptions. I am not in the advanced PD category and neither is Hal. Wish you well also.

  • Ahh Theresa, you are falling into the same mind set as those without Parkinson's. Every thing there discusses only the physical symptoms of Parkinson's. Every thing stated in your list I can do fantastically at home but have me do these things outside my controlled environment and that is a totally different story.

  • I agree entirely with your last statement. I find that most people think of the shakes when they hear the word l Parkinson's. But, I have to confess that before I was diagnosed I also knew very little about the disease. Which is why, I think, there is a misconception generally about PD. Furthermore, when you're out and about, and people see you looking quite "normal", no amount of trying to convince them how debilitating "off" periods are; how you struggle to breathe at night before your medication has kicked in; how when you wake up the morning and can't move any part of your body and feel that you are paralysed; when dining in company your meds start to wear off and you can't finish your meal without dropping it all of your shirt whilst at the same time drooling uncontrollably; when the excruciating dystonia in your toes stops you from being able to stand up and when you need somebody to help you go to the bathroom etc etc... Despite all this and a lot more, all they see is healthy looking you swinging the lead. C'est la vie mes braves!

  • This is so true. I've had people tell me that I look well and they don't see any Parkinson's symtoms. I have found a way to hide my pill rolling tremors, by keeping my hand still, holding it to my side, so that the tremor is not obvious. Of course, there is so much more to Parkinson's then tremor. If people only knew.

  • Good morning 🙂

    I have early onset pd. I live alone and this is a worry for me too. I have a cleaner that I pay. And a gardener and I have meals on wheels. But life is tough .. I'm lucky as I was referred to my local hospice which really is my lifeline. I have plans for end of life.. but it's the care in between that's the worry. Guess I will need a care package. But I so get the assumption made by drs and others that I have support at home and think it surprising that this is not the case. It makes me feel sad.

    Hope in someway this lets you know you are not alone.

    Much love Bea

  • Good question. I'm 68 and live alone. I was DX 5/14. I retired last year earlier than I planned to take better care of myself. I'm blessed because it seems my Parky is progressing slowly. I attend as many support groups as seminars as I can. In the Sacramento area we have a great number. In addition I attend yoga and am active at church and volunteer. And I check PD resources on the internet daily . At first I was scared and sad that I am alone especially attending meetings and events where there are mostly couples. Yes I had many teary pity parties.

    Now I take one day at a time and try to keep an attitude of gratitude. I also have a spoiled dog that keeps me company and makes me walk! My daughter and grandchildren live an hour away. As my PD progresses I will move closer to them in an assisted living environment.

    PRAYER GRATITUDE AND POSITIVITY!!! Celebrate the Good Days...pray for a cure that is closer each day! Be good to yourself. Smile as often as you can even if you have to fake it til you make it

    Blessings to you.

    Nana Kate

  • i like your attitude! I exercise and do yoga several times a week. On my bad days, I learn to get through it and i also believe ln drinking red wine and cannabis. My condo is small, and easy to clean and i have good neighbors to call. plus my son in law's office is 3 miles away and he and my daughter live 7 miles away! so, i am lucky. knowing they are close by is helpful.

  • Thank you Kate and Bea. It is good to hear from people in a similar position. I'm lucky that my daughters are nearby but I fear being a burden to them. I have moved into an apartment with good access and few obstacles. Like Bea I have early onset PD. Mine began twenty years ago and I had to stop working 9 years ago, though I continue to do honorary work, and I've studied some. The PD now seems to be accelerating. I guess I've used up all my reserves. i don't think doctors actually stop and think about how a person alone manages simple day to day tasks. I pay for a cleaner and no longer have a garden. I have a friend who loves to cook and sends me home with supplies of food, but I'm often just too fatigued to eat at night. I'm awaiting an assistance package but for the first time since getting sick I've realised how bleak the future is looking. I do think optimism has kept me going for a long time, and keeping my brain and body active. But everything gets more and more difficult.

    I have not yet made end of life plans and I'm not sure how to go about it. I really don't ever want to go into care. I would like my life to end when I can no look after myself. My neuro seems to hate the word prognosis. I guess because we're all different. However, I would find it helpful to be given some idea of a timeline.

    I've planned a trip overseas to the country where I was born, to catch up with old friends but I admit to being scared about making the journey.

    Has anyone travelled overseas alone? If so, I'd love to hear of their experience.

  • Hi Lisl, Although I've not yet reached the point where my PD "seems to be accelerating", I too remain solo. I also solo-travel abroad frequently and, as long as you have adequate access to the fundamentals (food, shelter, medicine) in the country you were born, my vote would be to 'just do it'. It may very well shake you out the existential funk you seem to be in and prompt the positive paradigm shift you'll need for the long term.

  • I have no parents or siblings still alive and no children. I live with the fear that something might happen to my wonderful husband, who is my caregiver. I'm 67, still working three days a week, but I don't think that will be for much longer. The idea of handling life alone terrifies me.

  • Thanks for sharing! That's where support groups, like this forum, can be of help. Many of us diagnosed with PD, have times when we are terrified of what challenges the future could bring. It's extremely difficult, trying to do many things alone, especially with diagnosed advanced PD. It might be good if you could contact an organization that could advise you on where you could get assistance, should the time come when you may need it. By having a plan in place, it should alleviate some of the anxiety you may be having. Wishing you the very best! Take one day at a time.

  • My worry is different. I am not alone but I have a husband who has a bad back and a heart problem and sometimes I have to take care of him instead of vice-versa. Total honesty --- I have the feeling (even though we never talked about it) that we both feel taking our own lives when we feel it is time is the right thing to do. Not being morbid...just truthful. I will not be a burden on my family and he also refuses that fate. Hopefully that is still a long time off.

  • My perspective is as a caregiver to a PD (and MG, as of the last year of his life) father. Dad was RX'd at 61 and lived nearly 14 years. The MG is what complicated his prognosis.

    I spent more time worrying about the future than appreciating the present, and I think my parents quietly did the same. My dad died peacefully - just sat down to rest. He could manage well enough to fix a snack and do some of his personal care. I wish we had brought up hospice (seems it's available a lot sooner now). But then again, I am pleased that both my parents got what they wanted, which was to stay home.

    My perspective is much simpler after looking back at my parents' needs. Don't feel you are a burden. Your grace in traveling this journey can be of value to others.

  • Thank you to everyone who provided such thoughtful and supportive comments. Christin, your reflections on your father were insightful. I too was a carer for both my parents, one after the other (well into my PD) and I learned a lot from them. I know that PD people's ability vary hugely at the end, and that aspiration pneumonia is what carries most people away, so I guess there is a choice about whether to accept antibiotics.

    I think the message I'm getting from you lovely supportive folk is to live for the present while trying to plan for all future eventualities.

  • What is MG, please?

  • Myasthenia Gravis. Also known informally as rag doll disease, which reflects the extreme muscle weakness it causes.

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