My journey with Parkinson’s disease

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YourLifeChoices’ regular travel writer Max Williams explains how this series came about.

I have known Winston Spence and his wife Kathy for 17 years. They are one of the nicest couples you could ever meet. Winston recently distributed his blogs of his Parkinson’s disease journey to close friends and family. I was very moved by his story and encouraged him to present it to YourLifeChoices for publication. It is such an uplifting tale of personal hardship and resilience. Hopefully, Winston’s story will raise awareness of this insidious disease.

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The early days
It started about seven years ago when we were flying to Vancouver to begin another travel adventure – this time a cruise to Alaska and some sockeye salmon fishing. I had been asleep on the plane and when I woke up I noticed my jaw and mouth were very stiff. It didn’t worry me at first as I thought jet lag was the problem. Kathy had also noticed that my speech had got a lot quieter.

When we arrived and caught up with our friends, they also commented on how quiet my voice was. As well, during that time, I was getting increasingly tired – I put it down to too much alcohol, late nights and laughing too much. When we came home some weeks later, I could sense that my speech was changing, but at that stage I wasn’t overly concerned about it.

When I think about it, the early signs of Parkinson’s were probably there during the previous couple of years when we were onsite managers of a Management Rights building in Mackay, Queensland. It was a high-pressure job with lots of staff and guest issues. I wasn’t sleeping well, and I was very stressed. Some nights I wouldn’t sleep at all. So, we sold the business in late 2012 and returned to our home in Noosa, to hopefully get our lives back on track in our retirement. During this whole period, I didn’t feel the need to go to a doctor.

A while after our Alaskan trip, I noticed that the right-hand side of my body was affecting me. My shoulder had dropped, plus my right leg was dragging a bit. Kathy also commented that my voice level had dropped even further, and I was slurring my words – nothing to worry about now that we were in a stress-free place and retired. I thought it would just be a matter of time and I would be back to normal – walking and getting my life back. A few good nights’ sleep and I’d be back to being bulletproof.

The diagnosis
I remember the day I was diagnosed as if it were yesterday. It was early in 2014 that I had an appointment with my GP for a regular checkup. I was 63 years young. I had my list of questions to ask him, including Kathy’s request about my slurred speech. I was sitting there, all done, and after he had written out my scripts, I asked about my slurred speech. He took notice of this, and after a string of questions he told me I may have had a small stroke. Wow! That knocked the socks off me. Then he told me a small stroke was often followed by a major stroke. I admit that I left the doctors surgery feeling a bit down.

I waited a couple of days to get an MRI scan. In the meantime, I started reading Dr Google and got scared. I was relieved to get my results back indicating that I hadn’t had a stroke. I was looking at my GP with many thoughts going through my head – what did I have? It was then he said, “I think you have Parkinson’s disease.”

What the hell is Parkinson’s disease? I always thought you had to have the shakes with Parkinson’s. Anyway, he said he would get me in to see a neurologist. He also said, “Don’t go home and read too much into it yet, let’s wait and see what he says.”

So, off home to tell Kathy. She remembers the day I told her. She was standing in the kitchen when I walked in. I said, they think I have Parkinson’s disease. She was shocked.

A good friend of ours got Parkinson’s before he was 40. He’s 70 now and has suffered over the years. He is a shaker. I don’t shake at all, so I didn’t really believe I had Parkinson’s. I’ve got to admit, though, after I told Kathy, we had a few tears and a cuddle to console each other. But really, I thought if I have it, it is minor, so let’s get on with life.

We started back with Dr Google. There are many good articles to read about Parkinson’s, although some of the information is a bit out there. But after a day or so I remember saying to Kathy, if this is what I have got it’s not too bad. Well, not as bad as multiple sclerosis or motor neurone disease. You don’t die from Parkinson’s, but you die with it. That gave me some comfort, although I still didn’t believe I had it.

After a couple of weeks, I had an appointment with a neurologist based at the Noosa Hospital. Kathy came with me. When I saw some of the patients in the waiting room, I thought there’s nothing wrong with me. The doctor gave me the once over, “Walk up there, now back again”, tested my reflexes, asked me to follow his finger with my eye and that was about it. Now for the result – yes, you are in early stages of Parkinson’s disease. I remember asking him where I was going with it and he told me there were over 50 types of Parkinson’s. Mine was affecting my speech, my balance, my handwriting and my right arm wasn’t swinging when I walked. He gave me a score 1.5 out of 10.

I think when we left there, even though it was a low score, we were quite relieved it wasn’t a terminal disease like MND. The concern was the uncertainty of how bad I would get. Back then, I never thought I had Parkinson’s; now I know that I was in denial.

Tomorrow
Part 2: Winston’s family and friends react to his news, travel becomes a greater priority and the need for medication is apparent.

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Written by Winston Spence

14 Comments

Total Comments: 14
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    WorldHerbsClinic Parkinson’s disease herbal FORMULA helped my dear husband. I feel so bad for him because this is a hard disease and he tried and tried and gets so frustrated. Over 2 months plus now maybe or so he has been taking this product and he is doing good. I see it happening too. He is happier and buttons his own shirts now. My husband is a good guy and we have been married for 51 years. This disease takes a person away slowly and it painful. But now my dear husband is more like himself again. He is more spry and has his wits about him. I think he is more sassy though, but I count all as good, as before he just really stopped talking. Now we talk again and I missed him so much. Thanks to World Herbs Clinic for this product. We don’t have much time left in this world and you have given us more time together. Thanks again. I hope this review works ok and that I do it right.

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      Hi Sonia, thanks for your letter, is the world herbs clinic available in Australia, we did google it and it seems to be only available from South Africa. Again thanks for your concerns . Winston

  2. 0
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    I hope we do see Part 2 tomorrow. I’m very interested. Thank you sonia67y for your very helpful comment.

  3. 0
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    Yes I understand when he says he was in denial – my husband was the same after he was diagnosed!
    I have been able to get him back on track with Vit D Protocol and Mega B – this regime has given him back interest and energy and motivation to do as much each day as he can handle ( some days not much)
    So Sonia I know what you are saying will be true about your husband – some help really makes a difference to their mental state and outlook!
    He is about to go on Medical CBD and hopefully we will have control over the pain, dystonia and dyskinesia and horrendous cramping – he should be a new man!
    Yes and you are right they do get a little sassy as well lol.

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      Hi Bridget, it’s good see your husband doing well on the vitamin D and Mega B , I’m sure that there’s something out there that will help us , its just to find what balance is best for us. What is Medical CBD. Thanks for your letter. Winston

  4. 0
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    My wife who was 69 on Friday was diagnosed with PD in her early 50’s, and it has been a difficult road for her at times About 7 or 8 years ago her left arm used to shake more and more, and she started showing signs of dyskinesia as well, This kept on getting worse very quickly, so her neurologist kept on increasing her medication doses all the time. Then about 6 years ago we asked him about the possibility of DBS (deep brain stimulation) surgery. He said, no way, because in my opinion you are suffering from lewy body dementia. She was showing signs of this, but it was subsequently shown to have been caused by the strong doses of medication that he was prescribing. We asked him several times after this about the surgery as her symptoms were rapidly getting worse, but his response was no way, and as I am the main authority in PD in SA you will never get it while I am on the board that gives recommendations for the amount of people who qualify every year (there are, or were restrictions on how many could be done then under public health). After this we went to another neurologist and neurosurgeon for a second opinion. They changed her medication and after a series of tests said she didn’t have lewy bodies and there was no reason why she shouldn’t have the surgery. She subsequently had the surgery, which was very successful, and it immediately stopped the violent shaking and the dyskinesia. The only downside is that her speech is now more slurred than previously, but that is a small inconvenience compared to the severe pain and discomfort she used to go through. Sorry for this being so long, but I needed to get my point across, which is, never accept a first opinion if it is negative and you are suffering badly. Always get a second opinion, because some specialists are so full of themselves that they believe their diagnosis can never be wrong.

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      Thank you, arbee, for taking the time to post your detailed comment. It’s always good to learn from those who have gone through the tough path of diagnosis and treatment for a major condition. I am glad to read that your wife is doing much better now after correct treatment.

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      Hi Arbee, thanks for your letter , I am at present going to a new neurologist next week , my previous neurologist retired, so I’m now looking for a new one. As Parkinson’s is so different between patients, it’s difficult to get a answer from your neurologist to where your at with your medications. I totally agree with you to get a second opinion,Its good to see your wife has found someone that she is comfortable with now and doing well ,I have been to a neurosurgeon about DBS but he said I’m not a candidate at this stage, my speech could get worse after the operation, which does concern me . I guess the correct dosage with medication is important to me at this stage. Take care Winston

  5. 0
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    I was shocked when I saw this. So simple.
    Please watch.
    https://www.youtube.com/watch?v=zNT8Zo_sfwo

  6. 0
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    My husband was diagnosed of Parkinsons disease 2 years ago, when he was 49. He had a stooped posture, tremors, right arm does not move and also a pulsating feeling in his body. He was placed on Senemet for 8 months and then Siferol was introduced and replaced the Senemet, during this time span he was also diagnosed with dementia. He started having hallucinations, lost touch with reality. Suspecting it was the medication I took him off the Siferol (with the doctor’s knowledge) and started him on PD natural herbal formula we ordered from AKANNI HERBAL CENTRE, his symptoms totally declined over a 3 weeks use of the AKANNI HERBAL Parkinsons disease natural herbal formula. He is now almost 51 and doing very well, the disease is totally reversed!  (Visit www. akanniherbalcentre .com)

  7. 0
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    I am very glad I came across this post and stopped to read it from beginning to end, as it left on a very positive note. I was in the beginning of my own journey with MS and the depression it’s was giving me was unbearable , I found some encouragement from several blogs and last year in seeing Rochelle make her personal goals after overcoming the disease with natural medicine I have to tried it also .I’ve kind of resigned to the fact that this is how life will be for me back until I found herbs that stop this multiple sclerosis easily and relief all the Fatigue and other symptoms I was experiencing ,I’m passing this info to anyone at there because ww w .multivitamincare .org has the right cure and caregiver to this disease ….I took various supplements, medicine prescribed by neurologist,massage and physiotherapy still the disease is was progressing very fast until the the MS formula from that caregiver .

  8. 0
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    I was suffering from Parkinson’s since 5 years & life had become disastrous for me.75 % of my body was covered by Tremors.After taking herb at multivitamincare.org under supervision of Dr. Farrugia I started getting results within 3 weeks .Treatment went very well and tremors are gone. I’m a strong advocate for other chronic lung disease patients seeking help from multivitamin herbal remedies and says, “What they’ve done for me and my life, it’s been almost a miracle.”


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