Our Small Garden, a place to potter and ponder.

Exercise has become a big topic for me this last few weeks. I was due to start Active Choices gym sessions a few weeks ago, but knowing my inability to cope with repetitive motion, I felt the types of exercise offered, treadmills, hand bicycles, cross trainers, were unsuitable. My shoulders are now at the point where I cannot raise my arms above my head, and any activity with repeated movements rapidly causes intense shoulder pain.

But I have to exercise. I have to look after my cardio-vascular health. I have been for more respiratory tests, and a consultation with a respiratory doctor. The prognosis isn’t good, stage 3/ cusp /4 COPD, surgery may be the only choice left, either lung-reduction surgery, or a new method of fitting pulmonary valves, or a lung transplant. The problem is rehabilitation after surgery, which would require exercise as part of the process, not to forget that prolonged surgery is likely to cause various levels of palsy. I have to go for further tests, 6 minute walking test, fitness to fly test (I want to visit my son in Belgium so flying is my best option), thoracic CT scan, and further tests to see if there is a contribution to my breathlessness from the neuropathy, ie MIP and MEP tests.

And that’s the problem, exercise and rehabilitation…

Despite not being able to perform on the gym equipment, I do try to exercise the best I can with the level of palsy present on each day. It may not seem like it, but my daily walk to the local shop, approx 100m in total, is quite a task. Because of the foot drop, hip and knee instability, and general core muscle weakness, it is quite an effort. Shoulder and arm restricted movement doesn’t help either. But it does give me a good workout. Because of the palsies I have to work much harder to walk, and I can be puffing and panting by 10-20 metres. My walking gets progressively worse, and the trip back is very difficult. 100 m can take 15 – 20 minutes, stopping several times to rest palsies and to get my breath back. It would be very easy for me to avoid doing this small trip, but it is a good daily exercise, allowing me to gauge my limits, and giving my cardio-vascular system and vestibular balance sense a good work out.

I also like to potter about my garden, I’m restricted to simple tasks, and sometimes not much more than to walk around looking at the plants, a bit of dead-heading, weeding a few pots, and perhaps potting up a few plants. My cacti collection is easy to look after, but again requires a little activity. It may not seem much but does require a bit of stretching, light lifting and some crouching and bending. I get quite puffed doing this, and it can and often does cause various palsies to temporarily worsen, which can make walking back to the house quite difficult. You might get the immpression that the garden is huge, but it is just 30 x 14 feet. It’s enough for me, and does provide an opportunity to get a bit of exercise. And I do like to be outside, fresh air and a bit of sunshine (when the english weather allows) feels good for my soul.

Exercise in the house is easy, I have to keep on the move to some degree or else my legs will go completely dead and my back will stiffen. So I’m often up and down in and out of chairs, and hobbling around the house. Once again the effort involved is quite high for such simple activity, and so my breathlessness comes on quickly. Tackling the stairs is quite a chore, and results in extreme breathlessness, but I have to get up those stairs many times (10 or so) a day. It’s hard work, it’s tiring, it’s sometimes depressing, but it is exercise.

I am not sure whether it will be possible to take up formalised exercise classes, there just seems to be too much repetition involved. i might be able to continue with some Tai Chi Shibashi exercises, but even those are quite difficult with poor balance, leg and shoulder weakness, although I can modify these movements to accomodate any palsies. I find them useful to help find my body’s limits.

What am I trying to say here?

Perhaps that for someone with ever changing and often worsening palsies, even simple tasks can become hard work. It’s very easy to get fatigued, and exercise can often be limited, but that doesn’t mean that exercise is being avoided.

HNPP is so interactive and responds so much to our activities and routines, it doesn’t always mix that well with other health problems. It is quite challenging, for ourselves, our families, and our Doctors.


2 thoughts on “Exercise

  1. Jon, do you know what is causing your respiratory problems? Does the HNPP have any part in this? (Apart from the restriction of your ability to exercise).The options you are faced with seem drastic!

    At a couple years away from my 60’th birthday I have similar problems, but much milder. I do exercise in a basic gym setup I have at home. Together with my 3 sons still at home we do a circuit routine where one exercise is done for 2.5 minutes before we move to the next one. We do this for approx. 30 minutes/day. I also walk to the shop and back daily, but my shop is one kilometre away. My foot drop in my left foot I restrict by using a sturdy pair of high tie-up boots that also support my ankles well.

    A year ago I ended up in hospital with cloths on both my lunges. I am now on 8mg Warfarin daily to stop my blood from coagulating badly. The cloths (that were huge and restricted my oxygen uptake to the level that I could only walk 50 meters before having to sit down) are slowly dissolving. Nobody knows why I suddenly had cloths and I am told that a very small % of us will have this issue. None of the specialists I have been to connect my HNPP with the cloths and I am told that they are two separate health problems. After the resent respiratory test my results, compared to a year ago, are very encouraging. Most measurements are now very close to “normal” for someone of my age. I can easily notice that my self as my ability to walk freely without having to take rest stops has improved drastically.

    As much as I am clearly in a better position than you, the similarities are still there. And even if my doctors refuse to contribute any of my problems to HNPP I am not 100% sure my self.

    • Hi Pete, I have emphysema/COPD and asthma. Emphysema caused by 30 or so years of smoking. I think I have always been mildly asthmatic, but this has worsened due to the emphysema. I was diagnosed with emphysema/COPD in 2005, I gave up smoking shortly after. I had a lot of respiratory tests, including tests to measure any muscular weakness caused by neuropathy. There was mild weakness but the doctors say that the biggest cause of my respiratory problems is the COPD. I don’t have any signs of clots/embolism on the lung, however a recent brain MRI has shown that I have had a mild stroke in the recent past. I’m not using blood thinners at the moment, although I have been prescribed them.
      I will be going for more testing to assess how my poor lung function is affecting my heart and circulation, and also to test for muscle weakness again. I think the docs want to be absolutely sure that HNPP isn’t a major causative factor before they consider sending me for major surgery.
      So far the concensus is that HNPP is not a major cause of my breathlessness. Further tests will help to confirm or contradict this opinion.

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