Hi Alex. I have read about you on Richard’s page (and donated there too). I too am a Parkinson’s runner, most recently done a 26.2 mile run ten days ago. Took me 7hr 30, but what the heck. It was off road, and I had to queue in a shop for supplies, and had a tea-break as well. You know as well as I that it’s not about the time.
I wonder how many of us there are, doing our best to show the illness two fingers? I am sort of thinking that it would be fun either to enter an event en masse, or else arrange a long-distance relay, with each of us taking as much of a leg as we can sensibly hope to run?
Would either of these appeal to you?
By: Marjorie Batchelor on March 22, 2010 at 12:21 pm
Hi Alex
I heard about your campaign through Johnny Hall. Do drop me a line anytime and let’s arrange a time to chat – would be good to put together a blog on http://www.therunningbug.co.uk
Hi Alex, what a privilege it was to meet you the other day, I have already put something onto Tredegar Ambulance wall and will let my facebook family know aswell. All the best with your mission but my prayer is for your Healing. I was recently at Bible week In Staffordshire where there were many genuine healings. Check out youtube ‘The finger of God’ or furious love if this interests you, these are documentaries on miracles. Hope this does not offend. God Bless you and your lovely Family -Terry (Paramedic)
Hi Terry, great to meet you too! Your assistance was greatly appreciated. Thank you.
Thanks also for the prayer. I am going to take that as I am sure that I will need it over the next few years! Belief in miracles is an amazing thing. Belief and positive mental thought can really make change happen. I believe that there is a cure out there and if we can find that, I will consider it a miracle!!
Hi Alex,
I am inspired by your story. I was diagnosed with Parkinsons 1 year ago (age 49) but had symptoms for the past 6 years. All my life I have wanted to run but let others aspects of my life (procrastination included) keep me from beginning. I’m feeling like pushing back at Parkinson’s. I say that with a grin on my face. Today I begin…slowly and deliberately! Planning on walking my way up to a run!
Julie
Ten days on a raw, organically-grown, plant food diet will invoke the body’s inherent rejevenation process and reverse Parkinsons.
Ref. Living Foods Institute, USA.
I am intrigued. I am always open to new ideas for Parkinson’s treatment, but query why this technique has not been aired before? Either way, I will give it a go. Is it only 10 days? Are there any foods that one must not eat?
Read about your story on dailymail.com. Why did the article say this about Deep Brain Stimulation; – ” This can reduce tremors for 15 years. ” ? I did not know there was an expiration with this treatment. We will pray for you.
I have had PD since I was 30. Now I am 50. Had DBS at age 40 after 10 years of oral meds. Off all meds now. Doing great so far. My story is alot like yours. Kids, wife, career, hobby’s, etc..
From what I have been told DBS gives respite from PD for an expected 15 years but also that my consultant has patients who were some of the first to have the procedure and they are twenty something years post treatment and only now are on very small additional doses of medication and have a great standard of life.
The article was checked by my consultant prior to publication, as I am not a medical expert. I am merely a sufferer like you and like you I am most likely to also have the same procedure too. As DBS had been used for some 10 years prior to your operation, and with the possibility that I will experience DBS in the near future, I am sure that the benefits of the treatment will be both long and effective.
Hi Alex
I have just read the article in the Review in Mail on Sunday. I wanted to wish you all the best in your future ventures. Your determined spirit is an inspiration.
PD touched my life as my father developed the disease shortly after retiring from teaching.
A former pupil by the name of James Bowthorpe has been cycling round the globe to raise money for research in to PD. so far he has raised £115,000.24 but this may be out of date by now. He is carrying out research at King’s Hospital London. If you are interested his email address is james@globecycle.org
With best wishes and kind regards Sarah
Hi Alex,
I also have PD and was diagnosed in 2001 at the age of 41 although had probably had symptoms at least two years before. The doctors were convinced I had problems with my neck and back. A friend who is a GP said would never have diagnosed PD because of my age. I have good and bad days but most people I know have no idea that I have the condition. By far my worst symptpm is the pain from stiffening up….especially at night. Having read your article in the mail you have my complete sympathy and great admiration for what you are doing. Having never been one for keeping fit prior to PD I certainly counldn’t run to the top of the road now!
I shall watch for news of you…good and best wishes….Teresa Hall x
Thank you for the message and letting me know about your PD. It takes courage to deal daily with rigidity and the effects of PD, including pain. I am lucky for the moment, that the only pain I have is that caused by mad races that I do. You have my admiration for your courage in sharing your problems of PD.
I am sure that when we find that cure, it will also take away the pain that you feel. Please keep in touch.
Hi Alex thank you for your reply. You said that it takes courage dealing with rigidity and pain from the PD,with me I think its total disbelief from the start that I could possibly have this condition.I wanted as few people to know as possible,telling people was awful because they would cry and get upset,while I was just numb.To be honest it has only been the last six months or less that it has sunk in and really hit me.Inside I am an emotional wreck and I miss the full of fun,bouncy blonde that is me.Oh my word! i do sound sorry for myself. I don’t know anyone else personally with PD .Bye the way my husband and I love duck, did you like the way Paul Rankin cooked it on the Michael Ball show for you? Take care , Teresa.
By: Teresa Hall on September 30, 2010 at 11:10 am
hi, Just read the article in the Review, very inspiring
the trick is to keep running as long as possible.I was
diagnosed with PD in december 2007 but by then i was having trouble with falling and walking ,I was 60 by then.Any way keep on trucking.
Regards Paul Midge
Dear Alex,
Just read your story in the sunday mail,
You are so brave,
I just wanted to say all the love in the world to you, and your lovely family,, Aurelie, Max, Louis,
We will keep in touch,to see how you are doing.
Love Gillian David & family
Not in your league when it comes to exercise, but do understand the importance of exercise and PD! I cycle, weights at the gym and do pilates and am probably the fitest I have ever been – cant run though due to dystonia!! Was at the WPC 2010 in Glasgow, missed a few of the exercise sessions – any advice re exercise? Other than do it!!
Garth
By: Garth Ravenhill on October 10, 2010 at 4:28 pm
I will first state that I am not a qualified fitness instructor. However, your post intrigues me. I am fairly mobile and as of yet I have not encountered dystonia. I guess that I have this yet to come! Sorry to hear that it prevents you from running.
You are bang on about exercise. I believe that it is one of the most important factors in fighting disease in general and also benefiting all sufferers with Parkinson’s. I am glad to hear that you cycle and do weights. However, I find that (for me) weights seem to aggravate my tremor. Nothwithstanding, a varied workout is what I subscribe to. I work closely with a trainer called Rookie. This focusses on strength and endurance. I also add rowing, cycling and core training to the mix too. This is on top of my running. My bad habit is not stretching enough and this has lead to problems in the past but I am working at it! 🙂
As regards your question, can you elaborate on what advice you are seeking? It would really help me tailor my response.
I think that is the key – “mix of exercise”. I like weights and have been in contact with a PD patient in Australia – Neil Sligar – who has his regime on the internet. I was concerned about weights and PD but can find no evidence to find it can cause problems – though people often say its not good for PD – I shake more after weights, but this soon goes and it does not add to my rigidity – it does though enhance my state of mind.
I love cycling and only started in january this year – 7 miles initially killed me, but have since done a 100 mile ride – it makes me feel good.
Need to add some speed into the mix so am thinking about boxing training. Not getting hit though!!
I guess I just need confirmation that I am doing the right thing, especially from someone who does the extremes of endurance. Does your neurologists support you or frown at your exploits? garth
By: Garth Ravenhill on October 10, 2010 at 7:37 pm
This article discussed Force Exercise (FE) versus Voluntary Exercise (VE) in a study done at the Cleveland Clinic, Cleveland, Ohio USA.
Jay Alberts,PhD was the person that noticed a difference to a woman (with Parkinson) after numerous days on the back of a bicycle for two, during a ride to raise money for Parkinson’s. Each day this woman, needed less medicine, tremors were reduced and moved easier.
I have a Theracycle and used it everyday for six months (15mph for 60 minutes) and it made an amazing difference. I now have to wait to resume use following recent surgery. I also did treadmill high incline walking, yoga, weights and rowing. I was diagnosed 4 years ago with Parkinson’s and exercise is what has kept me going
HibAlex
Finally got round to putting something on your website. I was diagnosed with PD on 23/12/2004 at the age of 41. Like you i feed of adrenalin and used to run marathons but i had to adapt my exercise and took up spin biking and having met you earlier in the year you inspired me to do extreme challenges and push my fitness to the limit and at the same time raise money for the 10millionmetres all of which will go to the Cure Parkinsons charity. So on the 23/12 i will spin bike for 12 hours at my local gym Walnuts Leisure Centre , Orpington, Kent from 6.30 am to (within the time frame from 6.30 am to 7.00 pm) all are welcome to join me and do a bit of cycling, pledge some money on your just giving website and help raise awareness of PD . Exercise is key to a PD suffers syptoms and general wellbeing Alex you are the guiding light and i am proud to be your friend. keep going buddy Danny
By: Danny James Lavender MBE on December 5, 2010 at 6:57 pm
10 Million Metres 
Alex;
Keep up the great work. would love to get together sometime. Will be in UK March 28 – April 1 and Glasgow for Parkinson’s World Congress.
Bob
http://www.positivelyparkinsons.ca
By: BOB kUHN on March 9, 2010
at 3:08 pm
Hi Bob, if you get this send me an email tomorrow…alex@alexflynn.co.uk
Best regards Alex
By: alexflynn001 on March 30, 2010
at 11:28 pm
Alex you have a very big heart and I am deeply honoured and proud to call you a friend. Keep up the good work.
Abass
By: Abass Juni Bundu on March 13, 2010
at 12:35 am
Thank you Abass. Means alot buddy. Hope to see you sometime soon? Take good care my friend.
By: alexflynn001 on March 13, 2010
at 12:48 am
Hi Alex. I have read about you on Richard’s page (and donated there too). I too am a Parkinson’s runner, most recently done a 26.2 mile run ten days ago. Took me 7hr 30, but what the heck. It was off road, and I had to queue in a shop for supplies, and had a tea-break as well. You know as well as I that it’s not about the time.
I wonder how many of us there are, doing our best to show the illness two fingers? I am sort of thinking that it would be fun either to enter an event en masse, or else arrange a long-distance relay, with each of us taking as much of a leg as we can sensibly hope to run?
Would either of these appeal to you?
By: Marjorie Batchelor on March 22, 2010
at 12:21 pm
Good luck big man!!
By: Alan Gosnell on March 31, 2010
at 1:08 pm
Hey Alex,
I am thrilled after reading your inspiring story. Hats off to you!
Best wishes for all your future endeavors.
Regards,
Samir
By: Samir on June 18, 2010
at 12:35 pm
Thanks Samir!
By: alexflynn001 on June 18, 2010
at 6:23 pm
have a look at Alex, at the Sponsored throw at Henley Judo Club
By: gary on July 7, 2010
at 9:28 pm
Thanks mate. Had a great time and the kids really did a great job. Thanks to all and to you for organising the event!!
By: alexflynn001 on July 7, 2010
at 9:38 pm
Good luck, very inspirational.
By: Scott on July 14, 2010
at 4:51 pm
Thanks Scott!
By: Alex Flynn on July 14, 2010
at 10:44 pm
Hi Alex
I heard about your campaign through Johnny Hall. Do drop me a line anytime and let’s arrange a time to chat – would be good to put together a blog on http://www.therunningbug.co.uk
By: John Griffith on July 22, 2010
at 12:58 pm
Hi Alex, what a privilege it was to meet you the other day, I have already put something onto Tredegar Ambulance wall and will let my facebook family know aswell. All the best with your mission but my prayer is for your Healing. I was recently at Bible week In Staffordshire where there were many genuine healings. Check out youtube ‘The finger of God’ or furious love if this interests you, these are documentaries on miracles. Hope this does not offend. God Bless you and your lovely Family -Terry (Paramedic)
By: Terry Donegan on August 27, 2010
at 7:18 pm
Hi Terry, great to meet you too! Your assistance was greatly appreciated. Thank you.
Thanks also for the prayer. I am going to take that as I am sure that I will need it over the next few years! Belief in miracles is an amazing thing. Belief and positive mental thought can really make change happen. I believe that there is a cure out there and if we can find that, I will consider it a miracle!!
By: Alex Flynn on August 29, 2010
at 7:59 am
What amazing courage and fortitude….you really are an example to follow….
By: ann shaw on September 2, 2010
at 7:29 pm
Dear Ann,
Thank you for your kind words. I hope that I can keep the momentum going and live up to that expectation each time…
Best wishes
Alex
By: Alex Flynn on September 5, 2010
at 12:43 pm
Hi Alex,
I am inspired by your story. I was diagnosed with Parkinsons 1 year ago (age 49) but had symptoms for the past 6 years. All my life I have wanted to run but let others aspects of my life (procrastination included) keep me from beginning. I’m feeling like pushing back at Parkinson’s. I say that with a grin on my face. Today I begin…slowly and deliberately! Planning on walking my way up to a run!
Julie
By: Julie on September 14, 2010
at 4:00 pm
Hi Julie,
Great to hear that your taking the first steps to change and push back at Parkinson’s. Keep in touch. I’d like to know how you get on!
Good luck and keep moving!!!
Alex
By: Alex Flynn on September 15, 2010
at 9:12 pm
Ten days on a raw, organically-grown, plant food diet will invoke the body’s inherent rejevenation process and reverse Parkinsons.
Ref. Living Foods Institute, USA.
Try it : it is a lot cheaper than steak.
By: Pat Rattigan on September 26, 2010
at 8:34 am
Hi Pat,
I am intrigued. I am always open to new ideas for Parkinson’s treatment, but query why this technique has not been aired before? Either way, I will give it a go. Is it only 10 days? Are there any foods that one must not eat?
Alex
By: Alex Flynn on September 26, 2010
at 10:54 am
Will put something in the post : is this the place?
Lake-Smith Griffin Associates, Walter House, 418 Strand, London WC2R 0PT
By: Pat Rattigan on September 26, 2010
at 3:40 pm
Alex,
Read about your story on dailymail.com. Why did the article say this about Deep Brain Stimulation; – ” This can reduce tremors for 15 years. ” ? I did not know there was an expiration with this treatment. We will pray for you.
I have had PD since I was 30. Now I am 50. Had DBS at age 40 after 10 years of oral meds. Off all meds now. Doing great so far. My story is alot like yours. Kids, wife, career, hobby’s, etc..
God Bless and Good luck.. srchancey@gmail.com
By: Steve Chanmus on September 26, 2010
at 2:23 pm
Hi Steve,
From what I have been told DBS gives respite from PD for an expected 15 years but also that my consultant has patients who were some of the first to have the procedure and they are twenty something years post treatment and only now are on very small additional doses of medication and have a great standard of life.
The article was checked by my consultant prior to publication, as I am not a medical expert. I am merely a sufferer like you and like you I am most likely to also have the same procedure too. As DBS had been used for some 10 years prior to your operation, and with the possibility that I will experience DBS in the near future, I am sure that the benefits of the treatment will be both long and effective.
Best wishes,
Alex
By: Alex Flynn on September 27, 2010
at 12:52 pm
Hi Alex
I have just read the article in the Review in Mail on Sunday. I wanted to wish you all the best in your future ventures. Your determined spirit is an inspiration.
PD touched my life as my father developed the disease shortly after retiring from teaching.
A former pupil by the name of James Bowthorpe has been cycling round the globe to raise money for research in to PD. so far he has raised £115,000.24 but this may be out of date by now. He is carrying out research at King’s Hospital London. If you are interested his email address is james@globecycle.org
With best wishes and kind regards Sarah
By: Sarah Wood on September 27, 2010
at 12:13 pm
Hi Sarah,
Thank you for the lovely message. I am sorry to hear about your father but also inspired by the efforts of James. I will email him.
Best wishes,
Alex
By: Alex Flynn on September 27, 2010
at 12:41 pm
Hi Alex,
I also have PD and was diagnosed in 2001 at the age of 41 although had probably had symptoms at least two years before. The doctors were convinced I had problems with my neck and back. A friend who is a GP said would never have diagnosed PD because of my age. I have good and bad days but most people I know have no idea that I have the condition. By far my worst symptpm is the pain from stiffening up….especially at night. Having read your article in the mail you have my complete sympathy and great admiration for what you are doing. Having never been one for keeping fit prior to PD I certainly counldn’t run to the top of the road now!
I shall watch for news of you…good and best wishes….Teresa Hall x
By: Teresa Hall on September 27, 2010
at 6:47 pm
Hi Teresa,
Thank you for the message and letting me know about your PD. It takes courage to deal daily with rigidity and the effects of PD, including pain. I am lucky for the moment, that the only pain I have is that caused by mad races that I do. You have my admiration for your courage in sharing your problems of PD.
I am sure that when we find that cure, it will also take away the pain that you feel. Please keep in touch.
Best wishes,
Alex
By: Alex Flynn on September 27, 2010
at 8:53 pm
Hi Alex thank you for your reply. You said that it takes courage dealing with rigidity and pain from the PD,with me I think its total disbelief from the start that I could possibly have this condition.I wanted as few people to know as possible,telling people was awful because they would cry and get upset,while I was just numb.To be honest it has only been the last six months or less that it has sunk in and really hit me.Inside I am an emotional wreck and I miss the full of fun,bouncy blonde that is me.Oh my word! i do sound sorry for myself. I don’t know anyone else personally with PD .Bye the way my husband and I love duck, did you like the way Paul Rankin cooked it on the Michael Ball show for you? Take care , Teresa.
By: Teresa Hall on September 30, 2010
at 11:10 am
hi, Just read the article in the Review, very inspiring
the trick is to keep running as long as possible.I was
diagnosed with PD in december 2007 but by then i was having trouble with falling and walking ,I was 60 by then.Any way keep on trucking.
Regards Paul Midge
By: paul midgley on September 27, 2010
at 9:48 pm
Hi Paul.
Will certainly keep trucking as long
as I can!!!
Best wishes
Alex
By: Alex Flynn on September 28, 2010
at 4:38 am
Hi Alex. Dad had it when he was 49.
Wish you all the very best. Left a donation lets hope the PDS can make some real progress soon.
Alan
By: Alan Boswell on September 29, 2010
at 4:17 pm
Dear Alan,
Thank you so much for your very generous donation. Hugely appreciated!!!
Best regards,
Alex
By: Alex Flynn on October 1, 2010
at 6:25 pm
Dear Alex,
Just read your story in the sunday mail,
You are so brave,
I just wanted to say all the love in the world to you, and your lovely family,, Aurelie, Max, Louis,
We will keep in touch,to see how you are doing.
Love Gillian David & family
By: Gillian on October 2, 2010
at 11:43 am
Dear Gillian,
Thank you so much for the lovely email. My best to you and your family.
Alex
By: Alex Flynn on October 10, 2010
at 6:47 pm
Alex,
Not in your league when it comes to exercise, but do understand the importance of exercise and PD! I cycle, weights at the gym and do pilates and am probably the fitest I have ever been – cant run though due to dystonia!! Was at the WPC 2010 in Glasgow, missed a few of the exercise sessions – any advice re exercise? Other than do it!!
Garth
By: Garth Ravenhill on October 10, 2010
at 4:28 pm
Hi Garth,
I will first state that I am not a qualified fitness instructor. However, your post intrigues me. I am fairly mobile and as of yet I have not encountered dystonia. I guess that I have this yet to come! Sorry to hear that it prevents you from running.
You are bang on about exercise. I believe that it is one of the most important factors in fighting disease in general and also benefiting all sufferers with Parkinson’s. I am glad to hear that you cycle and do weights. However, I find that (for me) weights seem to aggravate my tremor. Nothwithstanding, a varied workout is what I subscribe to. I work closely with a trainer called Rookie. This focusses on strength and endurance. I also add rowing, cycling and core training to the mix too. This is on top of my running. My bad habit is not stretching enough and this has lead to problems in the past but I am working at it! 🙂
As regards your question, can you elaborate on what advice you are seeking? It would really help me tailor my response.
I look forward to hearing from you. Keep moving.
Alex
By: Alex Flynn on October 10, 2010
at 6:46 pm
Alex,
I think that is the key – “mix of exercise”. I like weights and have been in contact with a PD patient in Australia – Neil Sligar – who has his regime on the internet. I was concerned about weights and PD but can find no evidence to find it can cause problems – though people often say its not good for PD – I shake more after weights, but this soon goes and it does not add to my rigidity – it does though enhance my state of mind.
I love cycling and only started in january this year – 7 miles initially killed me, but have since done a 100 mile ride – it makes me feel good.
Need to add some speed into the mix so am thinking about boxing training. Not getting hit though!!
I guess I just need confirmation that I am doing the right thing, especially from someone who does the extremes of endurance. Does your neurologists support you or frown at your exploits? garth
By: Garth Ravenhill on October 10, 2010
at 7:37 pm
http://nnr.sagepub.com/content/23/6/600.abstract
This article discussed Force Exercise (FE) versus Voluntary Exercise (VE) in a study done at the Cleveland Clinic, Cleveland, Ohio USA.
Jay Alberts,PhD was the person that noticed a difference to a woman (with Parkinson) after numerous days on the back of a bicycle for two, during a ride to raise money for Parkinson’s. Each day this woman, needed less medicine, tremors were reduced and moved easier.
I have a Theracycle and used it everyday for six months (15mph for 60 minutes) and it made an amazing difference. I now have to wait to resume use following recent surgery. I also did treadmill high incline walking, yoga, weights and rowing. I was diagnosed 4 years ago with Parkinson’s and exercise is what has kept me going
By: Deborah Snow on October 26, 2010
at 12:40 pm
HibAlex
Finally got round to putting something on your website. I was diagnosed with PD on 23/12/2004 at the age of 41. Like you i feed of adrenalin and used to run marathons but i had to adapt my exercise and took up spin biking and having met you earlier in the year you inspired me to do extreme challenges and push my fitness to the limit and at the same time raise money for the 10millionmetres all of which will go to the Cure Parkinsons charity. So on the 23/12 i will spin bike for 12 hours at my local gym Walnuts Leisure Centre , Orpington, Kent from 6.30 am to (within the time frame from 6.30 am to 7.00 pm) all are welcome to join me and do a bit of cycling, pledge some money on your just giving website and help raise awareness of PD . Exercise is key to a PD suffers syptoms and general wellbeing Alex you are the guiding light and i am proud to be your friend. keep going buddy Danny
By: Danny James Lavender MBE on December 5, 2010
at 6:57 pm