About 8 weeks ago my wife was walking our dogs and she tripped and fell. She was not badly hurt. A sprained wrist and a sore hip being the worst. 10 years ago she had a hip replacement and was told it would last for about 10 years and they would revue the situation. After the fall the wrist sorted itself in time but a nagging hip pain kicked in. Driving was uncomfortable for her. This was about the time I was prescibed meripexin (meripex in US) and was having trouble when the dosage was increased. I was, at the time incapable of driving due to increased tremor, just didn't trust myself.
The situation was not good. We ordered a 'shop and drop' from Tescos so had food delivered but we were both stuck in the house and the dogs were not getting any kind of walk. Dogs need a walk. It is good for them and like all doting owners it was a concern to both of us. "I couln't do it because I have an ilness which is incurable."
Something had to change.
Up until this time I did not walk the dogs. I am a bit dodgy on my feet, could not walk far and standing still on my feet for more than a minute or 2 made my ttremors kick in. Bite the bullet time re walking the dogs. Admittedly the walks were shorter but walked they were - by me. Hip and knee joints on fire by the time i got home. The more I walk the dogs the easier it becomes. Still sore but less so.
At the same time my new meds were creating heavier tremor throughout my body making me bloody miserable and unable to drive the car. The peak day was a Thursday when dyskinesia and dystonia hit me big time. I had a few diazepam and eventually things relaxed.
The next morning I phoned the hospital where the neuro was based but the ward was shut for the day. I then contacted my GP who asked me what i wanted to do about the meds. She was not my usual GP and she admitted she did not know much about PD
It was at this point that i became empowered to do something for myself instead of relying on decisions made by other people, namely medics. I told the GP what strength i required and she made up a script which i received later that day.
It took about 7/8 days to regulate the meds and get it right. Back sleepiing normally. Got up in the morning and did lots of things rather than sit on my bum and do nothing.
I gave the situation a real hard think about how i had been. I realised that i was doing the dying fly thing. "I'm a PWP, i can't do anything because i have an illness which is incurable".
I decided to change and change quite radically. This illness was beatng me about and I was not fighting back. i had thrown in the towel. White flag - I surrender. Life was passing me by. We did not go anywhere. All too much trouble.
It's only been a couple of weeks but i am loving, that is the only word to explain my new way of life, loving every day. We have had some great weather for the last 10 days or so. The front and back garden are looking great. I sorted it! Sure when i finished each session the tremors were up a bit but within an hour at most they were gone. A small price to pay. I cleaned the car - have had the car 17 months - always used the car wash. "I couldn't do it because I have an illness which is incurable." The house was beginning to look a bit rough round the edges. Spring cleaning next. The bungalow looks great inside and out. Power washed the drive and the rear riven slabs. Looks lovely. I am controlling my meds and my life.
I feel empowered and it feels great!
I look forward to getting up each day. I feed the dogs every morning. A small task but my wife always did it. Not now. I get washed and dressed as soon as i get up then take my meds. I used to sit around in my PJ's and dressing gown sometimes until mid afternoon. Some of you may think it was depression. It wasn't - it was just habit.
I feel so stupid that I have lost so many months/years because "I couldn't do it because I have an ilness which is incurable." I realise that due to my old attitude i stopped Elaine and I doing things on a regular basis which we could have enjoyed, and it was unfair on her. She never complained but we have spoken about it lately and she admits that she should have pushed me more. Well, maybe but it is my fault not hers.
I have let parkie rule my life for too long but no more. There may come a time when i cannot do certain things. There are some things that i cannot any longer do like play golf but there are alternatives. It is too easy to give in and in the past i have.
It is easy to give advice to other people but we need to look in on ourselves so that we follow our own advice.
When the time comes that your meds are not doing the business anymore then seek help but until then help yourself. When seeking advice make sure that the knowledge is freely given on both sides to expidite the correct conclusion. Blindly accepting what is prescribed is not the way forward. Information is out there. Do your own research. Be empowered.
It has taken me a lot of courage to admit to my past failings but if my old way of life rings bells to other people then maybe just maybe they can change things for the better not just for themselves but for those around them instead of being selfish and feeling sorry for themselves.
Apologies for the long blog but I did not want to leave anything out.
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drew410
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This is the best news I have heard in a long time. I am so happy for you. Now I know why my Dad was able to do some of the things that others said they could not do. He was one stubborn man. who always never said never. He said there is no such word. Keep the good work up, both of you.
Drew this is so true, thankyou for an inspiring story. I would like to add my experience tonight, similar theme though not quite the pd veteran you are. I hope that is ok.
There he was 66 years old, bent and slow and tremoring. He walked on to the stage, kings Place London, addressed the audience then joined the string quartet and played ancient musical instuments of the south seas.
He is Richard Nunns who was at the end of a brief gruelling schedule flying around the globe and performing in 3 countries. Tonight i watched him play and wished i could find him after to thank him not just for his music but also for the example of living life to the full and in the public eye despite many years diagnosed with Parkinsons.
Its an attitude of mind aided and abetted by medication,thanks for two lovely inspiring stories
Without drugs I could not function normally for the periods that I do.Drug therapy has given me back my life with a degree of normality.There was a price to pay initially as my body adjusted,thank god I stuck it through that difficult episode,days weeks it was months.These drug are powerfull a slow introduction a period of adjustment and if you make it you may be lucky enough to get a semblence of the life you had back. The initial problems were scary but a fair trade off although it didnt feel like it at the time,I would throw up my stomach felt as though it was on fire my legs swell,inconvenient nuisances.I chose to swallow that pill,and suffer with side effects,but the eventual outcome was worth every moment.Support was there but had to be sought it wasnt offered as a matter of course,it is a lonley vulnerable time.
With that medication I am to all intense and purposes in as good or bad condition as most women my age.Without those drugs my functionality,would be almost zero. I am superwoman with medication,but as imobile and rigid as a statue without it Move wonderful when you just do it,I have to swallow a cauldron of chemicals,but its worth it,ive got a quality of life and confidence in those medications but it was a long lonley road getting there.
No matter how good your neuro that brief exchange at clinic however good or bad doesnt get you through all this its not enough and never will be.
Pwp need better education in drug management,to facilitate maximum benefit and minimum side effects . This would require funding a consultative approved programme availabilty of medication advisor to ensure safety.There is a massive hole here in research and empowerment to self manage we can bemoan our plight for ever and a day but fundamentally available support and education is the empowerment route to safely managing your health with a chronic illness.Remember what works for one doesnt for another the individualistic nature of PD surely neccesitates self management to appropriate individuals PWP accepting it is not a route all would choose,I wonder how many would.
Thank you for writing what I need and needed to hear. Now for me to put some of this and eventually more into practice. I do very little exercise and hardlly go shopping with my wife. Other than work my life was on a stand still and I felt badly for our GSD (German Shepherd Dog) from Guide Dogs. Now I need to remember what you write/wrote and start myself. ~~Dennis
drew, I am going to do my best as able. My schedule can easily be an excuse...doctor appointments, some tlimes 4
a week, massage 2 to 3 times a week, PT added on to these,
surgery on my eyes April 10, etc. It was not that long ago I worked out at the gym 10am-12noon. Now I can hardly walk,
tremors and shakes and my chest hurt at the xyphoid and now it hurts from just above the xyphoid down to the "belly button." I have a difficult time sleeping due to stress, pain in shaking legs and my left foot keeps turning inward. But in spite of these things and more not mentioned I am SO GRATEFUL to YOU for your post that has caused me to re-focus, re-assest, re-evaluate. My GSD would love me to take her on a walk.
Dennis, May your God be with you. Although you have all these issues you remain positive. Bravo.
At the end of the day if you allow others to make your decisions then your glass will only be half full at best.
Because of your positive attitude you will inspire others and I sincerely hope you can continue on your positive road. You do the best you can -- nobody can argue that standpoint.
Let's face it, PD is a bitch. Nobody can pretend it is easy regardless of how it affects us. People like yourself are winning the battle of Parkies. You are fighting the good fight and hopefully encourage other people to make the effort. Beats giving in and wallowing in self pity. Amen and goodnight
Thank you, my friend. Always good to here from you. I shall continue to do the best I can with PD. Each evening about 6 PM it is difficult for me to move about and that is when I sometimes get discouraged because there is a lot of work yet to be done in my day. I should be making hospital rounds now. Today I was stuck at the RX due to tremors and I could not drive until they decided to stop. "Keeping on Keeping on". ~~Dennis
Hi mate, Some things you can overcome but other things you just have to leave to run their course like tremor. It takes time to build up this knowledge and for poeple that are new to being PWP panic can kick in and logical thought processes fly out of the window. Can't think of anybody who said it would be easy! It takes time to build a personal knowledge base but reading what people say on this site is, I find, invaluble. I'm learning all the time.
Woke up to 6 inches of snow this morning so time to battle with the front drive and get a pathway to get the car out. Visitors arrived from France last night. Great start to the week! LOL,
I think there is a string psychological effect from this illness. I think being active and positive and encouraging each other is vital. Im thinking of trying the john coleman programme or at least reading his book. He has managed to get himself back from stage 4 pd to being symptom free with this fighting attitude. Dont know if Ill be able to discipline myself to follow it but might have a try.
Hi Hilary. Like you, I have a copy of John Coleman's book. Which I have never read fully. My husband has just found it for me and I,also, shall be trying to follow his example.
Thanks Drew for sharing this wonderful blog, which is an inspiration to us all. After a long, hard slog YOU have got at least a good part of your life back again.
I asked my husband yesterday, before I read your blog, why he did not offer me more help with daily tasks. His reply was that he thought that I should continue doing things as normal as possible for as long as I can. I must admit that I did not see where he was coming from, but after reading your blog, now I do.
I also walk our two dogs daily, mainly with him. Do household chores, boring and do as much in the garden as I can as well as looking after our two grandaughters on a regular basis. Yes, I often have to push myself, but I do it. Your blog has helped me to see that my husband's way of helping me cope with this illness was right. Though I hate to admit it!!
V ery brave of you to admit this both to yourself and others, well done and keep up the good work it cannot be easy twice of an effort than others who do not suffer the blights of pd but you are a fighter and now a winner . take care
Hi Drew......Some months ago I got a new Dr. who removed some of my meds and had me almost unable to function "normally"that is when i realized I had to take control.I have changed Drs. And my meds are adjusted and I am now doing pretty well. I wrote the poem Grooving with PD.I love what you wrote and I am sure you will inspire many people. We have to keep moving and push ourselves and take control.which means if your treatment is not working speak up.We know our bodies better than anyone.Don't settle.We can enjoy our lives in spite of what we have.God Bless you.P.S. I have started a therapy for PD it is called LSVT BIG check it out on Google at LSVT Global
LSVT is an excellent program. I got a lot out of it until I hurt my shoulder in a fall. Had to stop and never started back again. My advice don't stop. After reading Drew's story I'm going to get back to it.
Thank you for sharing. I need to push hubby to return to his exercises. I know he can benefit from them but I am so overworked, I find it hard to be his cheerleader lately.
So glad you are feeling better. As pwp we get much more fatigued doing what was once routine. But it's important to continue to MOVE! Not just for our bodies, but for your brain.
PD has the potential to reach our soul and start consuming it also. We can not let it get this far. Can not. Must not. Will not.
In the old days, "I can't" was never heard from me. There are things I can't do now, but there are some things I still can do. I'm looking for the other door God has for me since the last one was closed & I know the new door is there.
wow drew - you are amazing - i wish i had the courage to question my meds - in fact i am going to do just that tomorrow - i am so fed -up with not being able to walk or to work in the garden - so i intend to phone my french neuro and tell him i need to feel better - and even if it means going into hosp here , i am willing to do it -
thanks so much for the inspiration
xxx
I know what it is like to have your life back. I had so many side effects from my meds all I could do was sleep.
My meds got changed, long story, and I also felt I got my life back. I returned to doing a lot of the housework I had quit doing and exercising regularly. Exercise and good nutrition are a great help.
Thank you for sharing. I need constant reminders that exercise and eating well are a key part of being "well".
A year ago I couldn't leave the house. What starts out as a medical condition turns into a permanent habit. I reluctantly started using the walker to go out. I was experimenting with Azilect and STalevo. In fact I was in a clinical trial. I told my neuro I wanted to go back to sinemet and he said OK. He just added a sinemet CR (time release) 2x a day. I had to force myself to go out every day at first with a helper now on my own. I am determined to be able to walk my grand-dogs again! And find another ballroom dance teacher. THanks for your inspiring story!
Dear Drew, what a fantastic attitude. I would love to share this with some of the people I know in our local support group.
Would you mind if I copied and pasted it into our monthly newsletter? I am afraid that some of our younger Parkinson's people are turning into old men and women before my very eyes and hearing this from somebody who took the bull by the horns might just jolt them into action and life again. Of course I would not use your name or identify you in any way.
I am particularly concerned for carers who have partners who have not come to terms with medication and exercise as a positive way forward and are having to support their partners in their bid to deny the illness, and consequently themselves, the medication which would smooth life for them and put them back in the driving seat. (although not always literally)
I hope that if you give your permission it is allowed within the terms of use if the site.
If you think it will help please feel free to copy and paste anything that I blog. I hope it has a positive effect for your group. Sorry for the delay - have been trundling around the village on my scooter taking photos of the psalm sunday walk round the village.
My GSD is now 3 years old and we try to walk every day. It is exercise we both need. I did get some extra training for him just to make sure he wasn't going to knock me on my behind during our walks. He helps to give me motivation and is a comforting presence in my life. I don't know what I would do without him.
Thank you all for your positive comments. Life is good - you just have to give yourself the extra push and get the mindset going in the right direction. You don't know what you can achieve until you try.
Hi Drew, When I read dodgy I thought "ha a Brit!" Later there were other clues but I miss an ols friend who used dodgy often.
I will piggy-back on your self discovery which has helped you reconnect with Drew! The following list is posted only in the same vein. I am not about to drown in my own pity party. Here's the short list. Fibromyalgia, PD, sleep apnea (not weight related) arrythmia, 2 knee surgeries and then total knee replacement,Malignant melanoma, parathyroid adenopathy, enough, alresdy. and, while this was going on my partner of 22 years died and I lost my job.
From my perspective : one foot in front of the other .. and it gets easier Some sessions with a good therapist finding the humor in life ( taught to me by my HIV clients) Call me if you need to hear one of lifes silly stories, I've accumulated a barrel full.
I'm going to review one as I climb into my bed. I do mean climb because with the mem mattress and the adjustable frame i may soon have to buy a ramp or stairs. e snd my dog creaking our way to bed! Love all around. draw as much as you need, it is a bottomless supply (No nasty remarks, pleae. Oh the typos are growing. I see at least 7 and my faithful spell check will catch more, I'm sure Nitey nite Joyce
It's so sad that life's lightning bolts not only strike in the same place but a cumulative strike. Illness is illness, Get the correct meds - may take time BUT you lose your job and your partner dies after 22 years together. No meds for that! Tough calls.
From memory you moved from East to West.
That's quite a list of medical thingy's you have but your sense of humour is intact. My best advice to you - stay away from strong magnets! LOL.
We have a mutual friend. Spell check. What a great buddy. Ever watchful by your side ready to jump in and sort out the typos.
Got French people coming to the village today for a week . Twinning exchange of 2 villages so final sorting out of abode before they arrive,
Wow! I repeat wow! This is the best blog I have ever read on here and they are all mighty fine in this very nice and helpful community. But you, have just blown me away with your story. Why? Well for many reasons but mainly because you switched your own light back on and then had the foresight to share. A huge bravo from me, and yes you are utterly right taking control is empowering and never ever too late. If this blog doesnt encourage people to get up and have a go I will be surprised! You have made my day now go kick ass I'll be doing the same today, and tomorrow, and the next day......
Morning Jess, knee deep in snow at the mo. Just as our French guests arrive! I've forgotten what you wanted me to research. If you could give me a quick ring I would be most obliged.
I agree, this is a great community. I have sought community all my life. Experienced it several times. All of those were in physical proximity. Until now the on line ones I tried (names withheld to protect the guilty) were unimpressive. A lot of whining and complaining without attempts to be supportive or even neutral. Eg. "Don't have anything to say, just want others to know that I am listening and supportive."
Nuff said.
Here's a another bit about me. Maybe it reveals why I am tough I was born in London England during the Blitz Krieg (Did I mention that before? My Dad was one of the German men interned on the Isle of Man. And when my parents decided to leave Europe altogether the British Government did not want to let me go because as a British subject I might be useful for the war effort!! at one year old! They reluctantly released me. Who in the gov't would want to change soiled nappies (Diapers for US folk) My first community was the small cluster of refugees that my parents bonded with. There were no other relatives in our group. No grands, uncles, aunts, cousins so we became a family.
To be continued. You might guess that I have tried to tell our story. With limited success It ain,t easy Bye for now.
Gran, I was not aware of your backround obviously as you had not mentioned it. I hope the joke re magnets did not upset you - not my intension. I know how difficult it is to tell a story which makes sense to the reader. I had a few goes before I was sure that I was getting the message across. When you are able I look forward to part 2.
Thanks, Drew, for such an inspiring blog! I'm really struggling with my meds....my neuro has changed them several times; but am still experiencing wearing off between dosages. Your encouragment has given me the courage to take charge of my life and my medications. I'm going to stop the suffering and give him a call tomorrow. There's got to be a better way.
I totally admire you Drew for admitting how you'd reacted to your PD and circumstances being what they were with your wife, you decided to get up and do something instead of giving up on your illness - our GP told me that she thought my hubby had given up, so I told him and it worked - he now gets back out in the garden and does things within his limits, by lunch-time he's had enough, showers, eats and goes to bed then for a good sleep, wakes up quite content. It doesn't happen every day, just when he feels well enough. Suffering Socks
Where is drew410 today? Ditto: "Blindly accepting what is prescribed is not the way forward. Information is out there. Do your own research. Be empowered."
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Looking back on my life.
A day in my life
ALL IS WELL
Frightening Experience 
Always in a hurry......
