First off, my photo is my first grand baby born May 27,2014!! She is a real beauty and the light of my life. I love her beyond all reason!!!
Now to the crux of the problem, I have been hit hard on the head with this disease!!!!! I have, in the past, been able to deal with my limitations but after a fall I took while in Spain with my son in May, I have been forced to accept that this disease is not going to get better, it is a progressive disease that will only get worse. That does not mean that I have given up, it just means I have to moderate some things, like I have physical therapist coming to my home once a week, and I have had to give up yoga for the time being. I still do Pilates once a week.
I knew logically that this disease would not get better, only worse but my heart hoped that I would be different. I had to,get a walker, which I use but I hate it!! That is because I have fallen 7-8 times in the last 6 months. But I hope to be back to my sunny self soon!!!!
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Sadiesadie
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Hi Sadiesadie,Don't be such a saddie saddie. There is evidence that Pd can be slowed down, or even reversed, if you do a certain type of regular exercise. That exercise is energetic walking! The goal is to walk for one hour, three times a week, for the best results.
It is obvious from your post that you are not in the right condition for walking hard, and especially not for one hour. However! That can change if you start exercising properly. Consult your physio to give you exercises to strengthen your leg muscles. Then, even using your walker, start walking as fast as YOU can for five minutes. Measure how far you have walked and every second day, walk in the same direction and measure the distance in five minutes. Keep a record of those distances and the times. At the end of two weeks, start walking for ten minutes and measure the distance each time. Every two weeks, add another five minutes to your time. You will find that your distance walked will continue to improve, and that is going to give you a great deal of personal satisfaction.
In less than five months, you will be walking for one hour a session. You keep on walking every second day for one hour, recording the distance traveled You will be amazed at how your health will improve. If you have dispensed with the walker, just keep up the good work.
If you pick up an injury or get sick, then don't walk until you are better, but come back down to no more than two miles a session. Then build it back up again by five minutes every second week.
In this way, you will see how much better you can get.
On the other hand, if you are unable to walk, because of balance problems, then get your physio to give you exercises YOU can do and do them regularly, three times a week, and see how your health improves.
Because you have Pd does not mean that you cannot get fitter, it only means that you have to do exercise, more so than so-called healthier people.
In addition to PD I also have Sarcoidosis and herniated discs in my spine so I am extremely limited in what I can do. But don't think for one minute I am down and out because I am not!!!!!!
Hi Sadiesadie. Could you enlighten us on what Sarcidosis is? Herniated or prolapsed discs in the spine is or are very painful, because they rub the cover (myelination) off the outside of the nerves. I have had two discs removed from my spine, because of injuries caused by walking with bad posture and picking up heavy weights incorrectly. I would not allow the surgeon to fuse the vertebrae together, because I don't believe that the spine should be rigid; it should be able to move. I have been able to ski and play golf since these operations and have had no problems. Others, who have had fusions have continued to have problems with their backs and many have had to have more discs removed and more fusions. Work through you pains, but don't do exercise that is dangerous for back problems. Talk to your physio about it.
Sarcoidois is a disease that can affect many parts of the body including skin, eyes and the lungs. In my case, it affects my lungs. I have granulomas all over my lungs. My lungs look like shattered glass in an X-ray. It causes extreme shortness of breath and I have to take a steroid inhaler and have been on Prenisone for over a year.
Hi Sadiesadie. I did not know something like this exists. I have nothing to help you face this incredible problem, other than determination! Determination to beat whatever it is that is ailing you.
Physical therapy helped me tremendously with falling (falling downstairs 5 times in two weeks is what got me in to a doctor to start finding out what was wrong). don't just do the exercises they give you when they are there. keep at it multiple times a day. Retraining your nerves and muscles normally takes2 weeks. Because this is degenerative, we must constantly be retraining them. Also, increase the Pilates frequency and try to walk more, even if it is with your walker for now. A daily exercise regime can help slow the disease down, and can help get back, at least for awhile, some of your ability to walk, etc. Keep at it and good luck.
Hi rch21. There are certain aspects relating to falling, one of which is the lack of concentration on the 'Actual movement'. What do I mean by this? If we are concentrating on where we are going and on the actual movement, be it climbing up or down stairs or walking on uneven surfaces, we stand a far better chance of avoiding falls. I have lived in a retirement village for over ten years now and have spoken to many people who have had severe falls during that time. I always asked them what they were thinking about, when they fell. The answers were invariably, "I was thinking about 'whatever', but it was never about where they were walking or what they were doing. We are all human beings. We all tend to let our minds wander onto more pressing subjects, when we are walking or even driving a car. Our subconscious brains are incredible in what they can do, without us being even aware of it. But the subconscious brain does not always see an obstacle in our path or a wet or slippery patch. That is when we fall, and it could have always been avoided if we had been watching where we were going!
The other side to falling is muscle strength. If we are trying to get out of the bath and are unable to lift our leg high enough to get it over the edge of the bath, then we have an accident. We should never stop exercising, to keep our muscles in shape.
Sadie what a beautiful baby, i am glad you are enjoying her, that is a good sign, sometimes PD even robs us of feeling pleasure. You are a survivor with many years since diagnosis so isnt it normal to feel sad on some days, i think so.
I loved what you wrote - I knew logically that this disease would not get better, only worse but my heart hoped that I would be different. I still feel like that sometimes and then something happens (like needing a walker) to remind us that we are declining. Do you think this is a time of grief you are experiencing, which will pass. With long term illnesses I think we grieve a little bit every now and then, when reality breaks through and we have to come to terms with it.
So this too will pass I am sure and you will feel the sun shining again.
John, I want to thank you for your posts. I am 74 and very recently diagnosed. I am hoping to avoid medications and walk at least 6 days a week vigorously, 5 to 7 miles a day and take dance, tai chi and hope to do yoga. I also am somewhat under the fantasy that I will outuwalk, outexercise this disease by just moving but I read that late diagnosed PD is actually worse in progressing faster and foretells early death. Have you heard or read anything like that? My diagnosis was early stage with one-sided tremor and very mild stiffness in one arm. What do you say? Can I manage without meds and is it adviseable? Doctor thought I should wait as well but hope to avoid altogether.
Hi racerCP. I am very impressed by your attitude and achievement. I am also very scared that you are doing too much. Too much exercise is worse than too little. Your muscles need a day to recover from heavy exercise. If you don't give them time to recover you will find that they start to eat themselves up. What happens is that your muscles get smaller and your fat gets bigger. I believed, at one stage of my life that the more exercise I did the better it would be, until I started to injure my muscles. I was more often unable to walk for as much as three months at a time, than I was able to carry on walking every day. Rest is also important!
Hi John, Thanks for your permission to rest. I have actually increased my activity level since the diagnosis because I want to outrun the progression of this disease. I am feeling much better and stronger since doing this and starting to wonder if I even have PD, maybe I have a post-mini-stroke tremor, or delayed ministroke tremor. My very first tremor symptoms occurred post hysterectomy operation and googling those words together I got some hits on a relationship between elective hysterectomy and stroke and a relationship between stroke and delayed tremor symptom. Something to think about and investigate but wonder if anyone else has that situation. Anyhow, much gratitude for your involvement and care in answering all these questions. More thanks, Sara
Hi racerCP. I hope I don't come over as giving people PERMISSION to rest. I merely passed on information thatreceived after my first torn ligament, doing what you are doing. I took no notice of that advice until the second injury of a torn hamstring. It does not pay to exercise hard two days in a row, let alone every day.
Thanks to all for the words of encouragement and advise. I know that this feeing of defeat will pass. After all, I have been to Balli twice and Spain once in the last three years. So again thanks and let's keep rolling!
Good morning Sadie, First, what a beautiful baby! I hope you have a long time of holding and loving her. My PD is also getting worse symptoms lately but I keep plugging away. Last week I had a day of crying all day, just felt useless and hopeless. But thank goodness it passed this time. I continue to just keep moving any way I can and i feel exhausted by evening. The long walking had to end for awhile, replaced with daily living activities for now such as yard work, house work, and d ay to day activities. But thanks to everyone' s replies this week I am hitting the treadmill again, even for just a few minutes each day. Thanks Sadie and everyone for the motivation!
Congrats. Falling is common but preventable by taking classes. Find a class in Alexander Technique, NIA or any class for some one trained for PD . The anecdotal accounts in my classes is that falls have fallen drastically
I feel the same as you . I'm looking to put my name on assisted living list although I hate it. Keeping up an apartment is getting me down. Yesterday I tried going for a brisk walk. Knees killed me all night. Plumbing sprung a leak and painters coming today. But I never give up!
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