My name is Alistair Sutherland and I have had Parkinson disease for 7 years now, and it's getting tougher.
I relish a challenge but this is the big one. I am always optimistic but sometimes now it is hard to keep smiling and pressing on. Each day I am robbed of something which is so difficult to do I do not try . I can't is not a phrase I understand, but extremely difficult. Like a shirt button for the sake of sanity leave it undone till the medication kicks in. - Hopefully !!
We suffer in silence, it is hard to explain to loved ones when you are trapped at the checkout. Come on I say to myself as I struggle to the goods in the bag-- come on says the queue building up at the checkout.!
Damn you Parky! "
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"it is hard to explain to loved ones when you are trapped at the checkout." It's not hard here, Alistair -- you're coming in loud and clear, and you don't have to suffer in silence either.
Could it be time for some tweaking of the meds? Or to add something to the day -- yoga? meditation? I get a lot out of a short glass of red wine, as rhyspeace12 suggests. Wouldn't it be nice if we could take a PD holiday and shed our bodies for a couple days?! One thing's sure, you're among friends.
Seems to me like you're being far to hard on yourself. If you are unable to meet your own requirements then that amounts to a load of unwanted / not needed stress.
hi Alistair..woke up this morning to your post and I smiled as I had not long finished a poem for world pd day about something I experienced a few weeks ago. looks like we all know each other even though none of us have met.....
Very nice I havebeen there. What is amazing is how I feel thinking about times when I was impatient with someone at the check out that healthy. I somehow have more patience now and I also have learned not to stair at someone with a disibility. GOD IS GOOD as I wonder if I have this to teach me something. I don't blame god but I do wonder. Have a great day. Keep the chin up. I would rather feel up than down . LOL. Your poem brings reflection and shows talent. Thank you
Thanks for sharing your very apposite poem: we do indeed "know each other even though we haven't met."
Perhaps in the queue that/ any day there is another PwP (or MS or a dystrophy or a carer or a neurologist) who might be seeking understandiing, enlightenment or support. They, like us, have no awareness of the conditions of those around us.
It's Parkinsons's Awareness Day/Week Month - why not take a punt & tell the cashier & the queue at the checkout that we have PD & so might slow things down?
You might be pleasantly surprised. I do this all the time (12 yrs) & the worst scenario I have found involved a discussion about what PD is & how it can affect us, which was raising awareness in others within earshot.
Please keep the poetry coming, you have a rare talent.
Your poem is amazing and insightful. BUT......where do you live?!!! Have always come across folks who hold a door, ask "can I help you?" move something out of my way, etc. People have been so kind. I think they really want to help so for heaven's sake if they just stand there not knowing what to do, ASK FOR HELP! I remember when I didn't have PD I thought it was rude to ask someone in crisis if they wanted help.
Dear Caroline: I, too, dread the check-out line at the store. Worrying how I must look to those waiting for me. But I know most people are compassionate and understand when I have challenges. A once man touched my arm as I walked by him, apologizing for the inconvenience I was causing, as if to say "I understand old friend, do not worry".
I can't see myself through their eyes so why stress, just continue laughing in "His Face" and run...
thankyou deparkiepoet......for those thoughts. like me you seem to find comfort in poetic lines . I enjoy very much reading yours. And also appreciate that you are always out there for everyone whereas I only pop in now and then. many thanks for that........
We are all in this together it seems. I refuse to bow down to Mr Parky, he is slowly stealing me as surely as the grim reaper - get back I say - Parky I am not done yet!
Many things yet to achieve, you can wait Mr parky damn you!
Hi know the feeling well! But tweak in meds might be good idea as others have said. A serotonin uptake inhibitor really worked for me feeling lighter and happier. Have a chat to PD nurses? Hope this helps you. Best wishes. Light yoga helps me too. Alex
I wish I could say it will be all right, that it will get better, it just requires that you do this or that or that you will adapt. I wish I could.
Now you need to get really tough, and at the same time make life easier. Now you have to plan and change things. Retirement, where you live, how you live, proximity to health services, friends, relatives. You need to establish a very rigorous exercise routine, that suits you and grit your teeth and do it. Read about NON-MOTOR symptoms and address to dry eyes, dry mouth, constipation, before your vision is damaged, you have no teeth etc. Then you need to learn how to fake a smile and try to be happy and make those around you happy. There is much to do, it will not be easy , get started , be tough , you can do it.
I am past 3 years since diagnoses. It is becoming more problematic. It is 3:30 in the morning and I should be asleep. At bedtime I took 100mg of generic Benadryl to help settle the tremor of my arm. Now I am awakened by my legs jerking. Well, off to bed I go again. Bye bye for probably two minutes I will be in bed.
I am 7yrs plus and now find what and when I eat as to taking meds is diffence between good and bad days chin up they should be our turn in next 2 yrs for cure parkyman
It is so encouraging that you are still out shopping alone when you've had PD for 7 years. I hope I will still be brave enough to do that. I have just been diagnosed for a little more than a year. Although I still have not told a lot of people about my new problem, I think I will someday do what Honeycombe3 suggested: tell the cashier and maybe the ones in line that I have PD and it may take longer for me to check out. I guess I would take a deep breath too as I am waiting in line myself.
many thanks for all your kind comments to my poem. I did reply to Alistair but my posts kept disappearing. I explained that to talk to people about our parkinsons with humour not only helps us to feel in control but also helps family, friends and even strangers to feel more comfortable. I find to laugh at my own symptoms with people helps me to cope better, as my poem goes.. "but if I continue to laugh right in his face"....
As for asking for help sometimes opportunities arise where I would ask for help but there are times when you feel to stop and say something is just delaying your exit . Like anyone with pd who hasn't medicated that heavy feeling in your legs, pain up through your back and clumsiness starts to creep in quickly. You can't seem to concentrate on all that's going on but in the back of your mind you just hope someone will come to your aid. " Waiting in the supermarket queue" is for those times when they don't...
Hi Alistair, I am only into 2nd year since being diagnose, but experiencing stiff hand & fingers so have same problem as you at the checkout, being slow and difficulty with bagging goods, some days a little better than usual.
If you don't mind alternative "medicine" please try this:
It's for people on and not on meds. Some people have benefited from it. I am practicing it too. I thought I have the responsibility to tell fellow PD warriors this.
Hmmm. Let's see. Im 15 years since dx. It's hard to do anything now. Even roll over in bed at night. It is embarrassing to be in public at times. But what can you do. Telling people/ family about it is hard. How can they understand? They don't walk your walk. Just be strong physically and mentally, and live hour to hour. When your can do stuff, do it. When you can't, then don't.
The shopping comments remind me of my Dad being embarrassed to handle money or cards, ID, etc. He said the dread seemed to make his tremors worse. Later, he would choke up (voice tremble, almost cry) very easily, which the neuro said was due to the dopamine levels. We learned to change the subject or speak for him when necessary. I took over shopping for him and my mother, who had severe RA since she was 26.
I realize many of you want to be independent and not feel a burden. Please know that it is an opportunity for others to learn and serve you.
All of you humble PwPs are great teachers, whether you know it or not.
We are all in this together. Some of us have taken control of our health and started doing things that help us to overcome some of the symptoms.
Pd is still an incurable condition but that does not mean there is nothing we can do about it.
In 1993, an experiment was carried out in Frenchay Hospital, Bristol, in which 6 stage-4 Pd patients took part. They each had a hole drilled in their head and a catheter inserted, which was joined up by a tube to a pump, and a container and battery to run it. Into this container they placed a substance called GDNF (Glial Derived Neurotrophic Factor) which is produced naturally in the brain. This was produced artificially by a company in the USA called Amgen.
After 6 months of having the GDNF pumped into the brain, the condition of all of those patients improved beyond the placebo level of at least 30%. Some patients improved considerably more than that. That can be regarded as 100% successful.
QUESTION. Why did they have to go to all that trouble and expense, when GDNF is produced naturally in the very area of the brain where it is required to repair damaged brain cells? Surely, the money spent on mimicking the GDNF and all the designing of all the equipment to get it into the brain could better have been spent on finding out how to get the brain to produce sufficient quantity of the GDNF to achieve the same result?
In 2006, at the 1st World Parkinson's Congress held in Washington DC, the results of a study on the affect of exercise on the progression of Pd was announced by Doctors Beth Fisher and Michael Zigmond, and those results showed that many types of exercise produce this GDNF and the results showed varying levels of improvement, with high intensity walking showing the biggest improvement in the condition of the rats, monkeys and Pd patients taking part in the study.
The probability is that this information has never been passed on to patients, even though it happened 10 years ago.
WHY IS ALL THIS A SECRET?
Why are our doctors not telling us to do FAST WALKING instead of prescribing medication that does nothing to slow down the progression of Pd?
The answer to these two questions seems to me to be purely a finacial matter.
That is my make on this subject, but I could be wrong.
However! Just before the Bristol study took place, I was finally diagnosed with Pd, having had many Pd symptoms since 1963, over 29 years before then. I started doing fast walking in 1994 and by 2002, had recovered from most of my symptoms to such an extent that nobody other than neurologists would ever know that I still have Pd.
I wrote a book about my experience and published the first edition in 2003. This met with a lot of criticism from our local Pd association, of which I had been chairman for five years, at which stage I was booted out of the association, being accused of misleading patients; claiming to be cured, claiming to be cured without the use of medication and using the association to sell my books.
All of those accusations, which were backed up by two leading neurologists at an Annual General Meeting of the association, were entirely false. I have never claimed to be cured. I mention the medication I took over 50 times in the book. I was asked by the association if they could sell my book, to which I readily agreed. I asked one of those neurologists, at that AGM, where do I claim to be cured? Her answer was, "NO. you don't claim to be cured in your book but that is the IMPRESSION THE READER GETS WHEN READING YOUR BOOK!" Now how can I respond to that?
Since then, I constantly hear patients tell me that their neurologist told them that I DO NOT HAVE PD, THEREFORE THEY SHOULD NOT LISTEN TO ANYTHING I TELL THEM!
All this tells me that the medical profession does not want us to get better! That they would prefer that we have holes drilled in our heads and spend the rest of our lives with all this equipment in our brains and bodies, just to keep us symptom-free.
I don't believe this to be true, although the evidence tells me otherwise. Most of my neurologists have been most helpful and have encouraged me to continue doing the exercise and have willingly given my medical records to Dr Norman Doidge, who wrote his latest book, "The Brain's Way of Healing" in which he wrote a whole chapter on my experience.
From his book, I expect that one day, not too far distant, the medical profession will accept that exercise can reverse the symptoms of Pd, and it will be part of their training. But a lot has to happen before that becomes reality.
In the meantime, patients like you have to continue to take medication that does nothing to slow the progression down and suffer the horrendous side effects of those medications.
I have started to visit every English-speaking country, at my own initial expense, to show Pd patients how they are immediately able to walk properly, by using their conscious brain to control all their movements. I have not yet met any patient - who is able to stand up on his/her own two legs - how to walk normally! I spoke to over 2500 patients and successfully walked with over 100 patients. If I am spared I would be willing to visit other non-English-speaking countries as well. I do not charge for what I do!
I have not needed to take any Parkinson's medication for the past 13 years and I still live a 'normal' life at the age of 81 and was able to travel nearly 20 000 kilometres to 7 cities in Australia in one month and immediately afterwards visit 12 different cities and/or venues in New Zealand the next month, without any health problems.
You would think that Pd patients would be beating down my front door, but they are not.
Not until doctors give their approval for what I am doing will others be encouraged to follow suit. I am only one man, doing all this for no reward! What more can I do?
Do you have an email address. I absolutely concur with your thoughts. My co- driver worked for Roche. It was never mentioned they were seeking a cure they have billions invested to find a drug for 'life' .Being an enterepenuer myself where would be the interest in a cure
I notice how little info there is out there about PD I am convinced there is a cover up.
Now there are two, and I am 59, and yesterday PD dealt me the final insult as my willing, very lovely lady had to carry my bag to the plane.
I never give up , started a new business with my son 4 years into PD in 2012, and wrote my first book last year.
Damn the medical 'trade' and PD. I WILL BRUSH OF THE TRAINERS TODAY.
I would like to converse via email. I live in Matlock UK.
I take meds and do not have side affects. I live a normal life. I am retired 10 years with PD and am doing better than i was 10 years ago. I have PD all other symptoms but not tremor. Meds do more than relieve tremor they relieve pain, stiffness, restore gait to normal, relief restless leg, help sleep, help depression, anger,anixity, there is more to PD than the ability to walk. The only thing that meds have not help is the ability to handle stress.
I am able to do most every thing i desire to do. I work on cars, maintain 2 acre home site, repair my kids houses, take care of my grand babies and I work out most every day.
People who have extreme side affects are more vocal than people who don't. It is like when you have a bad experience with any thing you will tell every one you know and every one you meet about it. But if it was a good experience you will tell only a few people about it.
Do not let some one tell you meds are all bad.
Research that John refers to and you will find a lot of half truths . They used walking as a way of controlling the study and there have been plenty of studies on all types of exercise which show that a lot of forms of exercise help PD and do more than "fast walking". Every one should know that exercise will help you deal with life. We have become a world of sit on our ass and take a pill and blame every one else for our problems and our actions, Take control of your life and your PD. I tell every one i meet that i have PD and tell them about my life.
As far as materials on Pd there is more than you could read in a life time.
People do live a normal life despite PD they just don't get on the web and write about it. Because it does not control there life.
Hi Alistair, you came up as the nearest person to me who has PD. I live in Wirksworth, so not too far away. I was diagnosed in January this year, but told that I had probably had PD for 5-7 years. I am fortunate that I do not seem to have many specific PD symptoms - I have more problems with chronic arthritis which I have had for many years. am quite a bit older than you (83) and getting on with things as best I can. I was having trouble sleeping until I was told that a glass of red wine at night might help. I now have a glass of port with my sleeping pill, and am sleeping much better. The next day then doesn't seem quite so bad.
Hope things are not too bad for you at the moment, and I send you my best wishes.
Well time has marched on,and now has Parky for ten years entering the 11th year.
there's good and bad news, I've reached 63 years, and it is 6 yrs since I made this post, and Caroline wonderful poem.
I conclude that only special people get Parkinson's disease, for we are built tough so we can endure the agony and frustration of the dreadfull state of our movement, or non movement!
I still drive to work everyday, and work a normal 60 hours per week. My son and I started a business 8 years ago making probably the finest Pates and Terrines in the land.
Two years ago completed a new factory build in 12 days! The busines is starting to blossom and just requires a bit more funding, and the market is massive.
Finished my second book FEAR, about my rally adventures over 35 years and £10 a book donating to Parkinson's cause. Send me email for details
Alistai609@gmail.com
Diet is really key to my well being, and getting the Meds right, I still shop and do most of the cooking,
I look back sometimes and think maybe I do not have the wretched disease then turn round and nearly fall over the foot because it is Super glued to the ground!
Now if I am late with the Meds, I get a glimpse of the full blown effect of the disease, I am rendered no movement at all and sometimes I have to crawl on my hands and knees.
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