I was wondering…
what peoples expectations and thoughts were on the stages of Parkinson’s and the implications at each ‘stage’ and looking forward.
I was wondering…
In keeping with my overall view of how I manage my Parkinson’s, which comes through loud and clear in many of my posts, you won’t be surprised to learn I take little notice of the different stages of Parkinson’s. preferring instead to live in the present and deal with issues as they arise. I have Parkinson’s, I know there will be deterioration over time and I will in all probability need increasing assistance. I know that given the length of time since diagnosis I am probably at quite a high risk of developing dementia. I am also aware that the natural aging process will continue.
I know and accept all this but I don’t see why it matters what stage I am in. Doctors can pigeon hole me if they must. I don’t personally have any use for the label the different stages give.
I do wonder what made you ask the question.
Just want to say I agree with Tot that if you believe there are different stages then you keep looking for them. My husband has Parkinson’s and now has the dementia but my father also had Parkinson’s and dementia but you couldn’t find two more different men! A lot depends on you personally and that includes those who do the caring as well, My parents weren’t close or caring of each other whilst we are very close and may fight it individually but work as a team.
So take care but don’t look for stages, tomorrow will happen but all that matters is today.
The reason I ask, was more to do with how medically we are put in boxes/stages. I just been having a physio session, for a number of issues, and the therapist was explaining to me (badly) may I say, about me having a foot in two different stages.
. A few months back i all I saw was shadows on my path, when Parkinsons sent me a few ‘curve balls’ I was not expecting. I’m back on track now and only take one day at a time and enjoying it to the best of my abilities. While keeping one eye out for low flying curve balls!
But had I had this conversation with the physio when I was struggling . it would not have been helpful at all. Parkinson’s is such a mixed bag of symptoms , I agree it’s not good to over think it.
Just keep the motto…use it or loose it , brain or mobility
I see, I was just interested and you are quite right if and when you’re going through a tough time such conversations can do a lot of damage to one’s mental health. It is hard not to take it to heart at such times and is yet another cross we have to bear. Good to hear you are in a good place just now - long may it be so.
It’s not me with Parkinsons, it’s my dad, but we are both people who like to know (as far as possible) what’s around the corner, possibly due to neurodiversity. I’ve recently been looking into the progression of PD because of trying to plan care. Currently Dad’s PD is the least of his issues and we were pondering the benefits of him moving to a ground floor flat much closer to us. However the social worker advised against it citing disease progression & physical deterioration, as in, the benefits of that could well be short lived & so money wasted etc. Having said that, what I’ve found so far is that one person’s story is one person’s story! There’s no ‘classic’ to work from or even vague timescales we can use to help us decide. I don’t even know if progress / deterioration is fairly linear or happens in blocks. We can only work from the right now which on the one hand is great but for us does come with a caveat!
Planning for future care needs is incredibly difficult for anyone but when you know you have a chronic deteriorating condition like Parkinson’s it is like being caught between the devil and the deep blue sea - I have Parkinson’s, I know I will deteriorate but whether that is physically and/or mentally and when is anybody’s guess. I am actually looking at this myself at the moment, while I am still able to, so that should I find I need to move from my flat a lot of the groundwork over possible options may be clarified. It is my own view that one way or another it’s all something of a gamble, professionals can only advise so far because they don’t know precisely how things will develop. For me it was a question of being realistic and considering what mattered to me. Mental incapacity is to me a bigger issue than physical because it costs so much more. I think you need to look carefully at all issues including funding options and the assets that are available and what you feel would give you the best quality of life, is it worth taking action now such as a move closer to family which may or may not work in the long term and if you had to move a second time how viable is that in terms of financial and emotional costs. Local authorities won’t assist if you are over the savings limit, which if you’re selling a property you would be, do you think you would prefer care at home or residential or some other form of assisted living and crucially if you are self funding will the money last - you can buy annuities but get specialist advice. My own thinking is changing from what I originally thought I would do but my circumstances are not yours so I can only advise you consider all options and get advice. I’m sorry this is probably not very helpful but when I started looking into it it became clear that I had to consider very carefully all options and my reasons. I may not need to move for several years but I might. Time spent finding out now will I hope put me in a strong position to act without worrying about the in and outs of some of the processes because of the time taken now. I do hope that makes sense it feels like I’ve written a lot and said nothing so let me know if all I’ve managed to do is confuse!!
Hi Henry’s cat, I agree with what Tot says. To add to that , You’ll notice plateaus and changes throughout the journey. As I have , you do what makes you and dad feel best. The social worker has no idea what it feels like to have Parkinsons or love some one who has. And enjoy any quality of time you have.
All the best Esme
Thank you both.
I think if it was “just” the PD then I’d move him closer because from what I can gather, things tend to happen fairly slowly. However, as we’ve seen with his diabetes, it can change overnight. We’d warned him for years about his blood sugars causing a massive stroke or leading to limb loss (which very nearly happened), but we never expected him to go blind & certainly not within weeks. It’s all such a gamble isn’t it? He has pushed us close to losing him so many times & each medic we encounter is always surprised he is still here (he’s 86 but has a full head of hair and a good appetite so he visually he looks a lot better than his medical condition would infer!) By the time it takes to sell & buy again, things could have changed so much.
We looked at assisted living but you can’t go into it needing care already. There is something called Close Care but it’s incredibly expensive if you are self funding (think McCarthy & Stone apartments) and the list is very long for social care places.
Dad didn’t spend much time in school & thinks in very simple terms. We all have ADHD so his concentration isn’t great anyway but his comprehension does seem to have decreased from the low level it was in his younger days. His short term memory is a bit hit & miss and he gets very fixated on small details. Sometimes you can have a great conversation with him and other times (within minutes) you’ll be shouting one word over and over but he can’t seem to process it. We don’t know if this is cognitive decline or ongoing issues (nearly 3 years…) with his hearing aids, that we’re fighting so hard to resolve. Of course, the SW only sees him when he is having a good day!! I’m so desperate to give him decent quality of life, for however long he has, but it seems impossible at the moment (we can’t get weekend care because of his medication timings - it’s on another thread somewhere).
Every day I’m hoping for a magic answer! xx
Hello again Henrys-cat
I’m afraid Esme and I haven’t helped a great deal but as you rightly point out you can only deal with the here and now and until something happens which tells you which way to jump and when you are as I said rather caught between the devil and the deep blue sea.
To answer your question re Parkinson’s you can quite easily find 5 identified stages of progression but I personally don’t find it useful or of any great value and prefer instead just to deal with issues as they arise but you may feel it gives you an overview. It is usually classed as a movement disorder but has some 40+ non motor symptoms which for many cause bigger problems than the physical ones. In most progression is usually slow. Quite a few of us also have a secondary diagnosis can carry similar symptoms to the point it is not always easy to know which condition is causing the problem. There could be an element of that in your father’s situation.
With regard to what the SW said. She was right to highlight the issue but ultimately it is a decision for your father and the family and if you consider it’s better to have him closer you are entirely within your rights to so do. However do your research ànd think carefully of all consequences before taking action, it would be a one time only decision and you do need to be aware of all implications incl financial.
Just to play Devil’s Advocate as I often do in my replies simply to offer a different way of looking at things, might a care home nearer to you be an option worth considering. He would have company and support you would have peace of mind and be able to see him, Please don’t think I am suggesting you just put him in a home in the negative way it is often portrayed. It can be a very successful solution and new care homes are opening which are nothing like the standard fare we assume is all there is. Just a thought to ponder.
Hope there is something here that helps a bit
Thanks Tot. It does really help to hear from people going through it who know about it and can pass that knowledge on. Even though it’s been 10 years, I know so little about PD (I think I might have said, not sure where I’ve posted what now… we thought other things were going to take him well before now).
We seem to have gone round and round in circles with what is the right thing to do. Dad seems to change tack each week, one week it’s a nursing home, the next it’s staying put & having care, then it’s moving house, this week it’s ‘nothing to live for’. I’d love him to move closer & go into Close Care but there isn’t anywhere within a 20 mile radius that isn’t either council list only or McCarthy & stone type expensive. We’re trying to sit tight now until he needs a care home (too bloody minded for that just yet) but SS can’t find weekend care for him so we may have no option. Seeing some of the horrendous stories on the Carers forum makes me feel like we’ve got it easy though!
Thank you for your thoughts. It’s really helpful x