Trekking with Parkinsons Disease: Travellers Tale

As I plan in my mind how to write this story, I am at 3,800 metres altitude, trekking in the Tian Shan mountains in Kyrgyzstan in Central Asia. I also have Parkinson's Disease, an incurable progressive disease that primarily effects movement. I thank my companions on this trek for their patience. I am a little slow but not badly. My balance is not good and I have to do some sections on all fours. Our guide Vlad is great. When I want to do it my way he stands back but is always right behind me if I ask for help.

But let's start at the beginning.

Seven years ago I felt some strange unconnected things. I was walking with my hands out in front of me rather than by my side. I also had difficulty recognising faces ¹, had hot flushes ² and fatigue. I had reported the hot flushes to my GP but nothing was identified as the cause.

I was a bit annoyed. I felt I had not slowed down, everybody else had sped up. This may have tested a few friendships.  

I felt that something was not right but was reluctant to go to my doctor with the concern that I was walking with my hands in front of me. I decided to leave it 'till it got better or worse. With that decision to “park” the problem I gave it no more thought. It did get worse but I didn't notice because I had “parked” it.

Until Christmas dinner. My sister said to me that I was not quite right. I instantly knew she was correct. I “un-parked” it. I saw the doctor as soon as possible and was referred to a neurologist. I did not know what to expect. If it was Motor Neuron Disease I had 4 years.³ Multiple Sclerosis shortens life by 7 years.⁴ Parkinson's is the best of them. Most people with Parkinson's disease have the same, or similar, life expectancy as those without the disease.⁵ Parkinson's is about quality of life not a quantity of life.

Parkinson's was a hard thing for me to accept as I had planned to spend my retirement years doing adventure sports like ski touring, snow camping, cycling and trekking.

By chance, I was due to lead a cycle trip, from Vienna to Rome in a few months and there was a planning meeting immediately after my neurologist appointment. With tears of joy6 I told my friends that I was not going to die and would still be able to lead the planned cycle trip.

I stopped at a pharmacist on the way home and filled the prescription, bought a coffee and took my first pill. I used to enjoy driving but had lost interest. Now I could see why. The colours and textures of the roadside vegetation were again so beautiful.

An early problem with an incurable condition is when and how to disclose it. I think we fear being judged as inferior and risk judging ourselves as inferior. There is stigma attached to poor health, particularly mental health. I made the decision to over disclose rather than under disclose. It's bad enough having an incurable disease without having to hide it or feel diminished by it.

Because I am quite open about my disease I know a few people who have Parkinson's. Compared to them, I have been lucky. My disease is progressing quite slowly. It may help that I exercise quite a lot including walking and cycling. Exercise is neuro-protective and cycling⁷ particularly so.

Friends and relatives of people with Parkinson's sometimes point to me and my active lifestyle and ask whether their friend would have benefited from copying my lifestyle. This is unfair, often the person had Parkinson's appear much to rapidly to change their lifestyle. It is victim blaming with its assumption that the victim did something wrong, that in some way it is their fault.

The symptoms of Parkinson's vary greatly from person to person and with time. Symptoms are categorised as motor (related to movement) or non-motor. The motor symptoms are much better known by the public but the non-motor symptoms may be more of a problem to sufferers.

Tremor is the best known symptom of Parkinson's. I have never had tremor. Probably, my biggest problem is REM sleep behavior disorder (RBD).⁸ This is not just sleep walking and sleep talking, it's sleep shouting and swearing, sleep leaping and falling. I have destroyed 2 tents in my sleep in the last year. This is a problem for activities in remote locations where a tent is not just for comfort; it is a matter of survival.

There is the amusing side too. I have woken trying to climb a brick wall at the head of my bed using the grout lines as finger and toe holds. Another time I dreamt that I was using a rope to climb a rock ledge. I woke hanging off the side of the bed using the sheet as a rope. I can be quite rational in a dream, aware that I am dreaming and able to decide whether to wake up or not.

So, I inch my way along a steep path leading to a high pass. I am clumsy with increased risk of a fall. But I am keeping up. I am still in the game, that's what matters. Life is good!

1    My research, not my doctors',.A literature search gives many references eg. Perception and memory for faces in Parkinson's disease https://www.sciencedirect.com/science/article/abs/pii/002839329190072G

  3    My research, not my doctors' https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1123440/

  4    My research, not my doctors' https://www.medicalnewstoday.com/articles/310832

  5    My research, not my doctors' https://www.medicalnewstoday.com/articles/parkinsons-life-expectancy.

  6    https://davisphinneyfoundation.org/pseudobulbar-affect-parkinsons/ No doctor has suggested I have pseudobulbar affect (PBA) but it seems a good fit. PBA, sometimes referred to as “emotional incontinence,” causes short episodes of sudden, unpredictable, uncontrollable laughing, crying, or frustration and anger. (Crying is the most common.) These episodes are frequent, can occur at any time, and are often incongruent with the person’s feelings.

  7    My research, not my doctors' Parkinson’s disease patients benefit from bicycling - a systematic review and meta- analysis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8463550/

  8    My doctors have never mentioned the words REM sleep behavior disorder (RBD) to me but I think we have agreement on this. https://www.parkinson.org/understanding-parkinsons/non-movement-symptoms/sleep-disorders

Written by Tony Forster, who travelled with us on our Kyrgyzstan & Tian Shan Mountains trek in 2024.