As a newly diagnosed PWP whose not on medication I would be really interested in what you have decided to do to maintain your health as best possible.
For myself I
1) Have reflexology every 2 weeks with a very skilled practitioner I have worked with in past to boost body and iron out any niggles. Have already noticed disappearance of aching areas in ankles, wrists and neck.
2) Have continued 2 x weekly exercise classes. Have increased amounts of walking. Intend to use wi fit shortly and increase overall physical activity to a high level
3) Take approx 2 x weekly Starflower oil capsules (thanks Beauxreflets for tip). Intend to do Parkinsons Improvement Programme. Trying to drink a lot more water as reflexology makes me more thirsty and has shown up I need to drink more
I would be very interested to hear from others.
Im happy to start a thread for those on meds if that would be seen as useful :)
Hi Summerskye re exercise to help P.D. I am comming up for 6 years post diagnosis.. with 20/20 hindsight I probably did have an earlier onset which was not picked up on ..I am 63 years old through my life I have done a bit of excercise viz ...swimming for cardio and general fitness.
light gymwork and established a fitness routine
Having a fitness routine ( not unlike yourself) after diagnosis I went to one of the fitness trainers at the gym I use he he did his homework as to P.D. worked out a routine to deal with posture etc and with occasional tweaking to counteract boredom..
there is no doubt that regular exercise keeps my P.D. under control..I have a very minimal drug routine and our P.D. nurse is chuffed that I am as mobile and active as I am.but with P.D. it sneaks up on you
at present I do two yoga sessions a week and swim 500 metres(front crawl) depending on mood three times ..I am fortunate that I have over the years exercised and a pre existing mindset as such.
If as on average people are diagnosed in or around more mature years and have seldom exercised .. if at all in their adult life ..I would not expect them to undertake a routine as I have but there are ways with gentle exercise may help living with P.D.
But for my money me and others who are able to exercise on a regular basis
definately keep P.D. symptoms under control along with a minimal drug routine
I hope you and others may find my observations helpful
Kind regards ...Ian (M)
I am also seeking to get by on minimal meds; none so far after 5 years. I agree exercise really helped and I notice the difference if I have a busy week and miss classes. I do different things from time to time but a mixture is good, I find, and alternate days works best for me. Yoga is a favourite. Some days I can swim better than others.
I also swear by Bowen therapy ( and have found reflexology good in the past too)
I have a naturopath who keeps me up to scratch with whatever supplements I need at the time; particularly brain food like omega oils
I try to eat well and organically and avoid preservatives etc.
My neuro is completely uninterested in my programme even though he is surprised how well I am!!!! Of course I may be just lucky.
I have had PD for approx. 2yrs now. I had to leave my job as a nurse as it was becoming difficult to do my job. My son bought me a Wii and the Wii fit plus. I must say I really enjoy it. There is not a day that goes by when I am not on it. I find it helps my fitness, my balance and my mood (doing a regime on the Wii makes me feel better about myself) I also like cycling but it is difficult at times to go out because of the British climate, so my husband bought a cycle trainer and I use this daily.(We use this in the garage) I definately think that regular excercise plays an important part in controlling the symptoms of PD.I am on medication also so for me the combination of meds and excercise works!
Have always exercised and found it relaxing as well as beneficial. I have never had a strain, sprain or broken bone but this year my PD symptoms have got worse and have had problems with dystonia in my foot. This has led to a tendon injury and I haven't been able to do my usual walking or jogging. My advice is when exercising just make sure you stretch really well. My symptoms are only on my left side so that does cause more stress on the other knee, elbow etc.
With regard to supplements, I had a a number of blood tests done by my GP as I seemed to suddenly go down hill earlier this year. I found out that I have had Glandular fever plus am very low in vitamin D and zinc. The lesson for me is don't blame everything on the parkinsons. The vitamin D deficiency is especially odd since I live in tropical Australia and have always been in the sun.
I am 50 on Monday. I am going to wake up early, go for a swim and surf and thank my lucky stars that I feel as good as I do.
I am 72 and am sure that the "Use it or lose it" approach applies at every age of PD onset and perhaps even more with the elderly to counteract the insidudious effect of how PD affects the normal 24/7 functioning of your muscles. My neuro is suffciently interested to mention in the GP letter the exercise I happen to mention when I see him but not interested enough to ask me what I actually do do which is quite a bit more than he knows about.
Worse, I have volunteered for a largescale research into the long-term progress of PD
which involved an afternoon with my neuro and a nurse of baseline assessments of mental agility, coordination, balance, sense of smell etc. etc. and two questionaires but not one question about exercise. So it is seems likely they will be looking for patterns without including what many of us know is important. Lets hope they will use exercise later on to account for differences in function. I don't say progression as I don't necessarily believe exercise to be neuroprotective but who knows
Alternative treatment; I take a Borage oil capsule to help keep the Kidney Adrenal glands operating at their best.
Exercise; In the evening (and after exerting too much load on the spine when applicable) I do four specific floor exercises that stretch the spine, to relieve muscle pressures, maximising the surface area of Central nerve. Making sure I drink enough water to help revitalise, the expanding the discs, so they can take the weight of the next day.
Since this routine. Dexterity has returned to both hands, spasm cramps have gone completely, circulation has improved so I do not feel the cold as before, walking is much improved (although I now have to build up all the lost muscle tone) and I now feel I have a grip on halting PD's advance.
When I experience arm tremor in an activity, I adjust my spine posture; and if it still persists a quick stretch and relax laying on my back upon the floor proves helpful.
Whoops forgot to say Hi,
And apart from Borage (star flower) oil - about once a (week if I remember) fortnight, I have a Coconut Oil sandwich (ie. Spread on in the place of butter).
Most of all I try to stay relaxed and positive of mind
If I am bothered by tremor or muscle cramps, I lie flat on my back on the floor for a few minutes and I feel wonderfully relaxed. Not sure why this works.
i am 51 and just diagnosed in august 2011 and started on a low dose of madopar
i have been going to the gym 3 or 4 times a week since mid thirties, so fairly fit anyway. i have noticed since my symptoms began two years ago that exercise does wonders for the rigidity in my right wrist. Since diagnosis I have started yoga, and it does wonders for rigidity and to some extent bradykinesia. I go to yoga class once a week, but figure i need to start the day with it on my own every day.
however my tremor, which is only when my right arm is in certain positions, is often more obvious when i exercise. So for this i am trying to put my arm in those positions, and focus on"stilling" my arm. It seems to work! i put my good left arm in the same position, and this pairing seems to help too. I am kind of hoping that i might succeed in retraining my brain to "still" the tremor permanently. Maybe wishful thinking, but its worth a try. Anyone else tried this?
I first noticed something wrong (tremor, loss of sense of smell) in 2002. My GP arranged an appointment with an NHS Neurologist and after several cancelled appointments he advised me to go private which I did and I was confirmed as a PWP in 2006 at age 52. Obviously I was devastated especially when I was told it was a progressive condition which I took to mean it would get progressively worse over time. NOT NECESSARILY TRUE. My husband came across an article by a Neurologist with an alternative viewpoint in which I was identified as a type. My posture was very poor and I adopted the typical PWP gait. Walking was difficult and I was in constant pain with muscle spasms. These posture problems were to be addressed first and numerous sessions of therapy followed. I also adopted a healthy diet of only natural foods plus natural supplements. As soon as I was able to I took up gym membership. After nearly 6 years my condition has improved so much that my new Neurologist (we recently moved house) said that he was 'amazed'. Even so, for some reason, he advised me to increase my medication! I refused. I have never been advised to do any of the lifestyle changes I have adopted by 'traditional' Neurologist only 'Go home and take this'. Perhaps I have been lucky being diagnosed at an early age which gave me time to build up my health and strength to help me cope should my condition worsen but I am so much better now and still on the minimum dosage for my medication.
The only supplements I take are natural (no chemicals) plus a good quality Omega 3 (high in DHA) and virgin coconut oil. My posture is now normal and I swing my arms when I walk. I am pain-free and feel wonderful. I would love to stop taking my medication but I realise that it could be dangerous without proper medical supervision.
This may not suit all sufferers and I am not advocating others to follow but I hope it will encourage some to take a more pro-active attitude and 'Fight Back'.
Your story is inspiring Hilary. Do you have a reference for the article that started you off?
I am trying similar strategies and have not got significantly worse but I can't say I'm better than I was 5 years ago.
Hullo again everybody its good to read through your recent posts for me
( i do realise that this condition progresses on an individual basis)
The exercise with minimal medicines can and does work in living with P.D.
is having an effect ..and as reflected in your recent posts .
Towit my visit to my neuro last week he reflected on how long after diagnosis I was getting on for six years and my current level of meds..which still are very low dosage.
He was well pleased I had a bit of a success story in how I have been handling
P.D. both mentally and physically (my other half was with me double checked
with her afterwards ..did I hear correctly she said yes the Dr did say that)
I have both feet on the ground as it were ... not in the business of miracles
or seeing faces of J.C.on soggy kitchen paper as reported in this mornings news
But you never know your luck... again reflected in these recent posts a few us
may just be able to confound the experts a little.. into looking at handling.. living with P.D...in another direction than throwing heavy duty meds etc at it
L.O.L to all best wishes ..Ian (M)
I have sent you a personal message which, I hope, will help. It was nice to hear from you.
Thanks to everyone and am finding all your replies inspiring!
I have to say when I was diagnosed I specifically asked the very senior and experienced neurologist if anything made a difference in diet. he replied nothing. He didnt tell me anything either about the possibility of exercise being very beneficial.
In some ways that is disappointing . But I appreciate hearing from you guys through the forum!
I too find lying on the floor of great benefit. (The getting there is usually by accident - I dont know when to quit falling down until i've gone completely bum about face).
I close my eyes, the dogs lick my face (at least I hope that's what they are doing), the pain gives way to laughter, then not so funny, then "right that's plenty!".
I've noticed that my falling down gets worse when I have a torpedo in the tube (as it were). Maybees some signals getting mixed up.
Summerskye; my neuros have been completely uninterested too. I've seen 5 different ones in 5 years and none remotely interested. WHen I took the consultant a list of supplements I had started taking he just sniffed and said 'well I don't suppose any of those will do you any harm...' Two others including the professor, when congratulating me on 'being lucky' and keeping well did not respond to me saying 'well I work hard at looking after myself'
Brilliant to read such positive stories. I over the last 6 years have used various methods to be well and to keep the meds as low as possible once i finaally needed them. I use/d Bowen, cranio-sacral (excellent for dodgy backs), gym cardio, yoga, mindful walking (re-teaching myself what to do once the meds kicked in a little), core muscle exercises, stretching, singing, dancing (to swing, especially - for some strange reason); zen calm when required; good diet. Currently very well indeed. Told my neuro about it and he said I had 'maintained or improved the plasticity inthe brain' by doing the mindful walking inparticular - the brain's ability to adapt to situations, relearn and substitute tasks to other areas if one area is below par. I walked a few miles the other day and last year I avoided going to the corner shop because of the effort required. So don't give up!
Hi again everybody..this thread so far has been quite informative and good to read of a number of others along with myself have decided to take things head on as it were mentally and physically what really concerns me is the reported indiffernce of the experts!!
I think it is a great shame... with our condition you cannot rule anything out in coping ..you must consider a wholistic approach to look that pills/drugs are considered current accepted practice within the medical are the only means of getting sympton,s under control ( no doubt somewhere the vested interests of rip off drug companies comes into play) is a very arrogant/closed mind way of dealing.
to reflect It has been and will be again no doubt in the future difficult to remain positive ... persevere with exercise etc keeping active
to date for me it has been worthwhile the benifits I am sure outweighs just sit and wait for P.D. to do its worst in perhaps along with something else seeing you off this mortal coil !!
Anyways keep up the good work..regards to all
Sorry... everyone I apologise for my last entry...it was a bit of a rant about the medical experts and their attitude... and I must stress.. like more than a couple of fellow travellers with P.D. I get a bit low now and again this morning unusually for me..was one of them
keep up the good fight do not give in ....L.O.L.....Ian (M)