[QUOTE=Tupelo3;1046125]
Of course, I am aware of that, and know that you use it or lose it, In my case I am losing it because the level of activity I would usually do is now impossible, and there are none which are geared for people in my situation. If you cannot stand for more than a few minutes at a time, which is where I am at right now, you regress. So the subject of this topic is intensive exercise. In my case that would be more than I can manage on my own, but still there is an absence of programs. What there is left is such low intensity stuff that it is meaningless. So there is a gap there. I can sit onmy chair and swing my legs and move my arms, but it will not keep my legs in shape for walking. This needs to be there for people, there is a point at which people start to decline faster than they can maintain themselves, it is a care need that is not being met, and it is accepted as an inevitability of our condition. Or the other interpretation is that you are not doing enough for yourself. But the truth is sometimes you are unable to and need the help, it is galling to have to admit it,, and that is I believe what older PWP who have been around a lot longer than I have mean when they say, all the research money is going into cures but very little is going into care. If we are to beat this condition it needs tackling at both ends, just like AD needs, too. Both ends because research needs to understand both ends. Not just us. Sorry long and circuitous route, but I am learning about this the hard way.

There is in that sentence an assumption that the person can actually manage into onto a bike and stay there. I have not heard of recumbent bikes that do this, and neither have I heard of bikes that are safe for people with serious balance problems. Nevertheless there is still a need not only for the individual to have enough cardio workout to maintain health and to help push back their PD symptoms.

Wheelchair bound people have this problem and the fact they go downhill easily unless they can wheel themselves is largely ignored. If they are young and fit and generally healthy and have a nice racing chair then that's fine. They only get rehabilitated when their mobility problem is the result of acute conditions not chronic ones. Often from things that are co-existing. Not when they don't have the dexterity and strength to wheel themselves. And they rarely get one of those great chairs either. TBH the only thing I have seen that approaches the problem is Max and his Country Flyer. But that is because he understands the problem. And it is not in production. Or not yet.

i think it is useful to post this type of information if only to alert new readers to the value of exercise. if i can help one person i'll keep posting on this topic and encouraging participation in similar trials. more needs to be done for advanced pd'ers, i'm in that group.

i sympathize with your situation, i don't even try vigorous exercise unless medicated, it ain't going to happen, just too uncomfortable and exhausting. i might do something sitting, standing or laying down.
i purchased a stationary recumbent bike maybe 3 years ago after reading about the forced exercise trial on a stationary tandem bike setup. i tried the recumbent bike out at the store and bought one, had it assembled there and when i brought it home i couldn't pedal smoothly, i thought it had been assembled incorrectly. i had someone else try it, worked fine for them and i realized i was under medicated, took another sinemet and the bike (me) worked fine.

I am glad people do the things they do, that they do and can do, climb mountains cycle, run marathons, and sometimes do more than they would ever have dreamed of doing prior to PD. I am also glad, Soccertese, and others who post about exercise, that you do post, because it is life extension and improvement for PwP.

What I am flagging up is related to but different to those things. A number of people have brought this up over the years, some of them found ways round it, like say, aquatherapy, or got physio. What I am talking about is graded programmes of exercise made available to PWP in later stages of disease that will push them further, but according to their ability. I see none of this. For instance you go to a Tai Chi class, maybe 45 mins or an hour. The person who has a high level of akinesia may not be able to do that, and becomes discouraged from trying.

This was first flagged up for me by other people, some of whose names you would recognise instantly. Both at org level and patient level. That some of these exercise efforts need to be aimed at the much less able, because they need it every bit as much, and are likely to get discouraged because they know they will never do these things. This can often happen because a new or co-existing health issue emerges. Or just because of progression.

The reason I am writing this is not just personal. I have arrived at that place and there is a vacuum. It is similar to the one that used to say people with Down's cannot benefit from education and will not achieve, so what is the point of putting effort into them. Today we know that is not true, and lots of Down's people do achieve and the more that do the more improved their lives are. A similar situation is starting to emerge in AD, which not long ago was deemed to be unworkable with. That too has proved untrue.

Because I can see this gap I am talking about it. I would not have chosen to be here and there is hope that I can be improved by treatment that I am not getting right now. In the meantime I am deteriorating, and I believe there is a point where medicine and science says we are not going to do anything more. That could be the point when people either disappear into their homes, or into a care situation. But is this too early, can they be given a further extension through exercise that is modified to their needs. I believe that to be the case. Outside of medically prescribed situations it rarely happens. Which is why I am advocating for it. It is part of the reason why in the past people have suggested PD communal care facilities, where PwP could get the support they need.

I mentioned aquatherapy and you, I think, mentioned chair based exercise. Both of which are great but not available that easily. In some places not at all. We should be exercising for the rest of our lives, but the fact remains that some of us will not be able to without help. I've seen a glimpse of that reality, and it is daunting. If I get the treatment I should be getting I may yet be able to do the things I love doing, walking, gardening, and maybe even something that pushes me further.

Some people may not have this possibility, so it is worth bringing it up. It is not either/or, it should be for all of us. There should not be a point where we can only watch and know that we are on our own.

If I've talked too much you can tell me to stop. On the other hand I know I have a valid point.

Lindy you're right: the people who need the most help, the people who have the most to lose, seem to get the least amount of research directed at them. And, you're right that just when you need to exercise the most it is most difficult.

But, I'm sorry if this sounds harsh, we've still got to do the best we can with what we've got or can get access to. If it's safe, and not excluding anything else, I recommend walking. Any distance is better than no distance.

John

your points are valid but you seem to be repeating yourself, why not start a new thread asking what advanced pd'ers are doing for exercise and what helps them?
as an aside, we can't ignore the fact that even mild exercise wards off other health problems as we age.
just curious, is it low energy, rigidity, balance, or other factors that makes it difficult to exercise? does your neuro have any suggestions?

I have a co-existing B12 deficiency. I can't vac a small room with an upright cleaner without having to sit down half a dozen times, Can't walk far either. Far means about 20 yards, My neuro is leaving it to other doctors, says it is not his field. Oh, and theres payback for the jaunt with the vac. No bonuses.

But that is not the point, a person can have a fall, or develop a heart problem, COPD, or anything, and then things change. Multiple overlapping conditions often have conflicting demands. But PWP still need to move. Over here care needs for long term conditions are being slashed. Even money won't buy them (I am not joking, even emergency rooms are disappearing.) And then there are places that never had such services to start off with..... so we need to know how to take care of people how to keep them going for longer. Wherever they are.

The deficiency is probably due to long term levodopa usage, btw, the methylation pathway for levodopa and B12 have a certain amount of crossover. Theres a link to entacapone too but I haven't got my head round that yet. Both my staple meds. It's well documented. Theres an advisory leaflet from one of the orgs about it. But most doctors do not have a clue.

Believe me there are a whole lot of orphan conditions out there. Try taking a look at B6 toxicity.

Anyway apologies for having somewhat hijacked this thread, I did not mean to.

A month ago I would not have understood exactly what you're talking about Lindy, but now I have a better handle on it. Right after Christmas when I was doing my biking in the basement, my heart rate repeatedly jumped to over 205. That led to wearing a heart rate monitor for two weeks as well as my increasing awareness of the arrhythmia in my chest. Last week we went to Canada to go skiing for the week and I was able to ski two runs before my right side basically locked up. I could do one turn and then stop, one turn and then stop. Happily I made it safely down the mountain to the download spot. End of skiing for the week. When I returned home on Saturday there were already three messages on my machine from the hospital asking me to make an appointment with a cardiologist, more accurately, an electro cardio physiologist. Imagine my surprise on Saturday night when I received yet another call asking to make an appointment. I had just finished my cycling, noting various arrhythmias along the way. My appointment is for tomorrow morning and the scheduling lady suggested that I stay off the bike. So if I don't ride the bike, my Parkinson's is worse, and if I do ride the bike apparently my heart could get worse. Around and around we go. My situation is nowhere near as severe as yours. But at least I have a little more insight into what you are going through.

We are still waiting for the cycle designed by Jay Alberts. I have ridden the prototype and it is easy to ride and safe to mount and dismount. Who knows when it will be available!?

I have also started the PD dance class, which is supportive of people at many levels.

Like Nan, I too have more understanding of the problem, because I have been diagnosed with "severe lumbar stenosis" (narrowing of spinal canal), causing a world of pain & misery for a few months, and am scheduled for surgery in April. Yikes. I had thought my increasing difficulties with biking, walking, dance class, yoga, etc., were PD-related, but turns out most are actually due to the spine thing. With PD & age, many things that you need & want to do often become harder or even harmful (e.g., yoga back-bends, pedaling, even walking in my case). Of course, I still think it's possible that the spine issue may be PD-related (many connections of PD to back problems). So what's a body to do?!

Thanks Nan, and Peony,

I raise this more really for others. We know there is this point at which people just lose the ability to cope. I highlighted the case of falls as fellow forumite Paula (sadly no longer with us) found. She went through quite a process of discovery after random fall in which she broke her femur. She wrote about some of the hurdles of multiple issues.

Care should be on the agenda not just as a requirement but as a challenge to improve things. That means keeping people mobile. It is a health care need that we cannot always meet ourselves.

I hope you both find ways of dealing with this stuff, heck I hope we all do, but I am not naive enough to think it will come easy for all. You have both explained, in a personal way, exactly what I mean. You know what you should be doing, but something get added to the mix, and so you have to rethink the whole lot. Good luck with your appointment Nan, and Peony, you could be right about it being PD related, especially the spinal stuff.