Where have I been for the last few years ..

[Mike1942]

I was a member of Parkinsons and several running groups. BUT I wanted more from my running so I joined British Triathlon and took up duathalon a big way. As a member of of the Age related team i was selected to represent GB at international leval 2 yrs running.(I came 4th on one occasion.The second time out I crashed my bike (, Mr ,P got in my way). Then COVID came along and all training was stopped. Including my weekly trip to my Physio for SportMassage MassageThn disaster stuck. On 2nd of January I fell down 13 flights of stairs flights of stairs 13;flights of stairs(Parkinson s again). I now have 3 stainless bolts holding my head onto my body I cannot walk let alone run.anf riding my bike is a big no. My balance is gone completely . And to cap it after a long stay in hospital I am still in continent."but you are alive,* they tell me"I'm not too sure about that. I had the P D under control until the fall now it's just like I am sitting here waiting to say good bye to everyone Mike

[Boscoejean]

sorry to hear this

[Kwinholt]

Mike, I’m sorry for your situation. I do understand. I was an ultra runner diagnosed with PD for 12 years but had things under control. Or so I thought…. After one of my marathons I ended up severing my hamstring and had surgery to reattach it. Couldn’t run for a year. I kept moving then Covid hit and shut everything down. I made the decision to have DBS surgery (I wish I didn’t) and have struggled with it since. I recently have had muscle spasms and a lot of pain, I can barely walk. I had an mri and now have some bulging discs and nerve occlusion. I do see a neurosurgeon next week for this. I feel that sometimes they just keep saying here’s another pill that might help and that’s not who I am. The pain can be so intense that sometimes that’s the only answer. At times I feel I can’t do it anymore. To running miles and miles to barely walking….. I have a beautiful new granddaughter that gives me hope but they don’t let me watch her because I have PD. I guess my point is don’t give up and that you are not alone. There are people out there that understand. Take care. Karen

[park_bear in reply to Kwinholt]

I recovered from sciatica due to disc problems by virtue of taking fish oil. Here's an animal study that demonstrated disc recovery by this means: Omega-3 Fatty Acid Supplementation Reduces Intervertebral Disc Degeneration. Link: pubmed.ncbi.nlm.nih.gov/318...

I wrote about this here tinyurl.com/ktv33aye

Salmon is the best source of fish oil. I have some salmon daily. Part of the bear diet

[Kwinholt in reply to park_bear]

PB, Thank you for the information. K

[Husbandsupporter in reply to Kwinholt]

Kwinholt,

I know your joy in running has been taking away, and possibly your other enjoyment as well. I think you for sharing your story and being so vulnerable.

You said you had DBS but wish you hadn’t? May I ask why that is?

As everyone with PD is different and the journey is varies with each person, I haven’t read many accounts from DBS that aren’t positive. And if I may, if you’re not satisfied, have you discussed having it removed?

May your day be hopeful and filled with smiles. Take good care and your story helps so many.

[Kwinholt in reply to Husbandsupporter]

Hi there, Maybe I used a bad choice of words, I absolutely take less medicine since the DBS and it has helped with the awful dystonia but I haven’t quite found “my sweet spot” with the ratio of DBS and medicine. I knew what to do with only medication. And with physical things going on my medication is creeping back up. I see my neurologist every 3 months and receive Botox injections in my leg and we talk about trying different things but I struggle to find my comfort zone. I am grateful and hopeful that I can get through all of this and get to some normal again. Take care . Karen

[Husbandsupporter in reply to Kwinholt]

Thank you for clarifying. Prayers that your “sweet” spot will be quick coming and your feeling better and pain lessened

[JayPwP]

Sorry to hear about your situation Mike...

I will pray for you and hope you come out of this situation. I have heard some miraculous stories of healing through breathing exercises. Please try deep breathing (4in 8hold 8out nose breathing / 1hr x 3 per day) diligently at least for 6 months and see if it helps.

Just don't give up

[marmaduke123]

hello Mike …I haven’t visited this site for a good while now so I decided tonight to have a look and read your post and replies. I can understand stand totally how you all feel. I too felt under control except for those really bad times that come now and then but at the end of may this year I fell off a garden wall. With the result I had 2 broken bones in my wrist which needed a plate and 7 pins, a broken neck at C7 which now holds 9 bolts and screws, I’m in a neck brace until I see the surgeon again in 3weeks have had Prolapsed disc previously plus bulges . I do not feel steady anymore so have to use a wheelchair or walker. I cannot be on my own in case I stumble as I don’t think they could open me up again . With having 20 years of pd they had to go via the back of the neck which meant 17 stiches. The surgeon said I should be healed by Christmas but I will feel rotten until18 months from date of operation. I really hope my neck will mend as it still feels shaky. So we’re in this together and all we can do is take what we have and go forward with it, stay strong minded, laugh in the face of adversity and stay out of hospitals as they really are not equipped to look after Parkinson patients….

hope this helps in some way

[garygjs]

Tough break, Mike. Sorry to hear it.

Given your history, you'll be sick of sitting about doing nothing.

Not quite what you're used to, but a seated pedal exerciser will get the legs working if you're able.

Perhaps a rowing machine might be an option at some point in your recovery? Little balance required. Especially good for the quads...rowers tend to make good cyclists.

[Grumpy77]

Hang in strong man. I hope you pull through with peace, a smile on your face and without pains

[PalmSprings]

My heart goes out to you. I just fell down the bottom two stairs at a cabin. I badly sprained my ankle and foot with a possible break of my metatarsal. This has laid me up for several weeks but I will recover. Being laid up sucks. Thinking of you and hope you get some relief!

[Mike1942 in reply to PalmSprings]

Thanks everyone. That you are there is a great comfort to me.i will add some more for you to consider.i may be 82 buti do not consider myself as past it" I intend to take part in Disabled sporting events next year. I have purchased a 3 wheeled machine that has no peddles. You are sort of strapped in and you feet are on the ground and you proppell your self that way. It's called a running frame. Time will tell. As far as Parkinsons is concerned I am untreatable . I failed the Apomorfine test. So all the meds I have been swallowing for the last ten years plus. .. ....have been a waste of time and money. So what do you suggest.help please. Mike

[NextStage in reply to Mike1942]

Mike,

Don't write off medicine being able to help just yet. According to this study in JAMA Neurology, a negative apomorphine test is not necessarily conclusive.

jamanetwork.com/journals/ja...

From the link:

The positive predictive value was 95%.

the negative predictive value was only 63%

This means that those who got a positive result, 95% of the time that was correct. However, those that got a negative result, it was only right 63% of the time. So, the medicine may still work for you.

It good to hear that you are still nurturing your resilience and grit.

[Husbandsupporter]

Dear Mike,

As hard as it might be for you to share your story with us, I can tell you it’s also very important to others with PD.

Your ordeal was indeed harrowing and I’m sure very scary. Your bravery and persistence is a model for others to follow.

I applaud your openness, and explanations, as well as the strength you exhibit.

You are a witness to you have PD but you haven’t let PD have you—— even though as you said there are days when you want to give up. My husband is the same way.

Take good care

[Stag10]

hi Mike I’m really sorry to read your email and what happened with you life just ain’t fair and I wish you the best in the future stay focused as you are an inspiration to us all God bless kind regards Dean

[Chastar]

Mike I’m new here - YOPD. Your strength and determination have carried you so far. You sound a very inspiring example of how to live with PD despite great adversity. Keep us posted about your next adventure with the 3 wheeled machine. I hope you can find a medication/ treatment to help. Peace and kind wishes to you.