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Parkinson's Movement
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All the updates from Bassofspades

Hi, my good friends!

I havent been posting very much lately but thats because I have a lot going on. Here's all of the updates for anybody who is interested.

Over the last summer, I had tried an unusual approach to attempt to cure all of my chronic ails, including PD and back problems. The method I used was outlined in the writings of Dr John Sarno in his many books such as Healing Back Pain and The Divided Mind. My previous posts tell the tale of how I started feeling better in every way. I tell you, friends, I was absolutely EUPHORIC! But alas, in my euphoria, i overdid it at work and at the gym, which takes me to the next chapter:

For the past few years or so, I had occasional nuisance leg pains here and there. They had been becoming more frequent in the last year or so. I looked up my old Neurologist and decided to make an appointment after not seeing him for 2 years or so. After all, I was doing well on the Hinz Amino Acid protocol. What did I need him for? I decided to make the appointment to see if my leg pain was Parkinsons related. Unfortunately he was booked 3 months out so I had to wait to get in. In the meantime, I resumed normal activities and ignore the pain as psychological (as recommended by Dr Sarno's books) but my leg pain got worse. And worse. And WORSE! I couldnt walk without really bad pain anymore. I decided to get a new primary, then, since my beloved Dr Robinson had passed away last July. He was the Dr that helped me establish myself on the Hinz Protocol. By the way, for those of you unfamiliar with The Hinz Protocol. you can see my past posts for full details about it. I'll just say that I was on it because I had a fear of taking Sinemet (carbidopa/Leveadopa) for the potential side effects of dyskinesia. My primary was convinced that my leg pain was due to pinched nerves in my back. So to prove this, we set up for xrays and and MRI. The xrays showed nothing structurally wrong, so I was euphoric again, reinforcing my belief that it was all psychological. Then I had the MRI. That showed severe spinal stenosis in Lumbars 2-3, 3-4 and moderate in L4-5. At first I was thinking, great, no change since my MRI 7 years ago! But as I overdid it and overdid it, thinking I could not hurt myself...I really hurt myself. The pain was intractable. My PD symptoms got worse as well. (I think theres a link there)

I got a referral to a neurosurgeon to reconsider the laminectomy surgery that was advised to me 7 years ago. HE was booked out several months, too! (whats up with doctors in Florida? We need more of them!) In the meantime, I took one day off of work because of the pain and it became a whole can of worms at my job. I had to apply for FMLA at my supervisors advice to protect my job of I was going to start missing more days (which I will not, too much grief about that! I 'll suck it up as much as it hurts!!) My coworkers have been so incredibly wonderful, taking all of my on-call (I work in a cardiac cath lab and inteventional radiology) and helping me get through each painful day till I get through this.

Finally my neurologist appointment came around. By now I already was pretty convinced that the back issues with the leg pain was not only not caused by the PD, but that perhaps the PD was caused by the adrenaline of the pain and stress of the back issues. After all, the PD diagnosis came a few months after the original Lumbar Spinal Stenosis diagnosis 7 years ago. Hmmm.... So my Neurologist has a new Nurse Practitioner, and I got to see her instead that day . She was delightful. So delightful, in fact, that she convinced me to (join the dark side!) get off the Hinz Amino Acid Protocol and try Sinemet again. She said it IS the Right drug. Ok, I'm trying it. Heres why - Dr Costantni, our beloved patron saint of Thiamine B-1 has pretty solid evidence that if I continue t o take my B1, I will never progress in PD and never develop dyskinesia. plus its about $11 a month for sinemet versus about $100 for Amino Acid precursors!! Worth a try, indeed! And some good news, she made me draw a clock, which I did successfully, proving that I dont have Alzheimers. God I hope not, Im not even 50 yet! Anyway, I cheated, I already knew about this test.

Next, the spine surgeon drama... their office called and wanted to push my appointment back another SIX WEEKS! I was ready to cry. my appointment would have been in a week and I was in so much pain I thought about going to the ER every day. The only thing keeping me out of the ER was the remote chance that I could get the sloppiest surgeon if thats who was on call. Better off waiting for the good one, any day! Well I called his office EVERY DAY to see if they had a cancellation. And they did! AND it was a day earlier than my original appointment!! So the first thing he says is, we're going to do that laminectomy! The MRI was on the screen. He told me Im probably feeling this symptom here and that symptom there, and he nailed every one of them We briefly talked about the PD. I showed him how my tremors were mostly intention tremors (tremors with movement) and he noted that that is probably Cerebellar based. And I told him how its worse when I have pain, adrenaline and anxiety. Well, he didnt comment further but I said maybe this will improve when I get the back taken care of. He shrugged a bit as if to say maybe, who knows? He wasnt concerned but he was glad I stopped taking the herbal stuff due to potential blood thinning properties. Surgery, you know.

So Im booked for an L3-4,L4-5 Lumbar laminectomy with fusion (a little instability was noted on special xrays). It will be in a week from Wednesday. My sons birthday. I'll be in the hospital 3-5 days till my birthday probably. Then 5-6 weeks till Im back to work, which sounds pretty good to me. And he'll have me walking 3 miles a day! Im most excited about that since right now walking to the bathroom KILLS me!!

LESSON LEARNED: Verify with a qualified doctor that you dont have a structural problem before starting a mind-body program to fix your back pain.

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thanks for sharing it. I too was thinking about your absence from the forum and was thinking about sending you a message to find out the reason. Wish you all the best my friend

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Thank you my dear friend !

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Hope all goes well, best wishes. Pain is a horrible thing. Mary

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Thanks Mary!

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You've been on a tough roller coaster ride, bass! Glad to hear that you are finally starting to see the light at the end of that tunnel! Your information is invaluable on this forum as spinal stenosis seems so common in PD!

Art

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I'm learning just how tough a man can be. If I can work full time in this situation I might be invincible

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Thanks for sharing. Wish you the best.

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Thank you Ernie my good friend!!

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Ciao Basso,

I once said that to make the problems smaller, it is enough to double them, but sometimes you exaggerate. :-)

Welcome back my friend.

What was beautiful will soon be even more.

Gio :-)

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Thank you Gio my good friend !!!

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Now I know why we haven't heard much from you! Pain is so debilitating! It can be so disrupting, that each day becomes a trial, just to get through the day. I know that,from a crushing fracture of L-3 in my back, in 1976. Sorry you've had to go through so much. Additionally, I have severe arthritis in my knees and back. I also have PD, and have found Sinemet to be helpful, for relief of stiff muscle pain and resting tremors. I hope you get relief soon.

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Thank you dd! Yes I just try to get through each day and rest up for the next !

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So sorry you’ve been dealing with all this but glad to hear there is a solution to your problem! Prayers coming your way for a quick and complete recovery! Keep us posted on how you are doing, Connie😊

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Thanks for the prayers Connie my good friend!! I think that will certainly help!!

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Sorry to hear that you have been through all these difficulties. Please stay positive and let us know how you are getting on.

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I will, thanks my good friend!

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Good to see you back😊

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I still look at the forum every day so to me it's like I never really left! Thanks my friend!!

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Thanks for sharing bass. I too, like iqbaliqbal, was thinking about your absence from the forum & thinking of sending you a message.

My husband with PD has been suffering with arthritis & general pain for many years but for the past 11 months the pain has been intolerable. It started in his back but has now migrated to his calves and ankles. He too has been diagnosed with spinal stenosis but we are at the mercy of the UK NHS. Consequently the process is very slow. In the past few years he has been admitted to hospital for 5 steroid injections in his back but only one of them actually helped his pain for a few months. Like you, I purchased Dr Sarno's book and tried to get Glen to abide by the techniques therein but, to no avail. Glen is on tramadol opiates, morphine patches, Gabapentin, CBD oil & uses topical pain relief; all of which help a little but the underlying pain is always present.

Anyway, next week we have the last ditch attempt by the NHS to avoid costly surgery as Glen is booked into hospital for a spinal nerve block. If that doesn't work, then I suspect it will be a laminectomy.....so fingers crossed that the nerve block will work!

Glen is convinced that if he can eliminate the pain, then his mobility will vastly improve because, like you, at the moment, even walking to the bathroom kills him!

Btw I think you were probably right to fear the dyskinesia side effect from taking Sinemet. Glen has been taking it for most of the 14 years since he was diagnosed & just recently has developed quite noticeable dyskinesia (even though he's been on HDT for well over a year, but we're still not sure if we have got the dosage right). He doesn't have it all the time but it's very disconcerting, so if anyone has any tips on how to eliminate dyskinesia, they would be very welcome.

Thanks.

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Amantadine has been alleged to help. At least that is what the inventors of the new time-release version say

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I'm not sure that a dopamine agonist is a first line drug. I think that's after levodopa fails to be effective. I could be wrong though. And the side effects are also pretty scary, like sex addiction and gambling addiction! Yikes!

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I agree with you 100% that dopamine agonists are definitely not a first-line drug, for the reasons that you state. However, amantadine is not a dopamine agonist. It started in life as an antiviral, was highly overused and became ineffective for that reason, and probably someone noticed that it helped with their Parkinson's.

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Sorry, I googled it and that's what Dr Google said. My doctor once gave me tamiflu and, although I threw it up after the first dose and didn't take any more, my pd symptoms were close to non existent for a week after!

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Thanks park-bear, funny you should mention Amantadine as Glen's neurologist has prescribed a small dose of Amantadine per day which he just started taking this week!

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How's he doing with it?

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Probably too soon to tell, although so far, so good; but he has to stop taking all medication (except Sinemet) now before he goes into hospital on Tuesday.

When are you going into hospital? 27th?

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Yes the 27th. I can't even take a multivitamin because the vitamin e can be a blood thinner.

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Oh, I didn't know that 😱 thanks for mentioning

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Yeah, that was news to me too!

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Thanks my dear friend ! I'm sorry to hear about Glen having such a hard time . Sounds like we have the same type of pain. Forget Sarnos book for now. Id use the techniques for non structural problems like anxiety and even pd, but if he has spinal stenosis, you run the risk of making it worse like I did. No drug will touch this pain so all I take is 2 tramadol per day and then 2 Tylenol, when I go to work. If I'm not working I don't take anything. There's no point, I'd just be damaging the rest of my organs! . Ice and rest at the end of the day. It just plain sucks. The nerve block can help but the pain will come back eventually when the block wears off . Best thing to do is try to get physical therapy while the block is working. Make the most of it. But so many people I know that work with me in health care, including doctors and nurses, have told me they had a laminectomy and it helped 100 percent. So keep trying to get on with a good surgeon. I know you've tried everything else already. I hung in there for 7 years until it finally got to the point where I can't bear it any longer. I wish him the best!!

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Best of luck with your surgery Bass....sending good thoughts and prayers for a speedy recovery. :) You'll be doing your 3 miles in no time!

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Thanks my dear friend !!

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It sounds like your surgeon will make you "brand new" again, Bass! Best wishes for a speedy and full recovery! My husband has been experiencing lower back pain but not bad and not daily. His biggest problem is weak knees. We are still looking for the miraculous HDT dose. Debating on "to Sinemet or not to Sinemet."

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Thanks my dear! Its not always easy to find the magical right dose of thiamine. heck, I'm still not sure myself! As long as you take at least 1000mg a day, I think you'll be ok to take sinemet. Of course i'm only guessing. I have been on various doses from 500mg to 6000mg thiamine a day. The initial dose was 4000 and i felt great after a month or two, but the effect wore off a few months later. DR Costantini said to play around with it, add 2000, take away 2000...it all felt the same after a month or two at each level. So I just take 1000 to 1500 a day and I'm good there.

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Thanks, Bass! My husband is on IM injections HDT. Thinking about switching to oral to better adjust the dose. He started at 100ml X 2/W, then 3 X W, back to 100ml X 2 W, then 150ml (100ml dose and 50ml dose weekly), then 50ml X 2W, and now 40ml X 2 W. Until the latest dose of 40ml X 2 W, all the trials were suggested by our good Dr. C. He started last June and it's been a lengthy and frustrating experience, but we will never give it up as my husband has responded to HDT, especially when he had his first IM injection.

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I would add a smoothie of good quality whey protein isolate to his diet each day. Guaranteed good results!! Try it and check in with me in a few weeks. Maybe even days. Try it yourself too!

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Thank you, Bass, you're the best. Actually, I was thinking and searching about it. I sure will get it. He is taking T.A.G. (Trans Alanyl Glutamine) which it was prescribed by his FM doctor at Cleveland. He's been on it for a year.

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Best of luck with your surgery and a speedy recovery.

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Thank you so much my friend!!

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Good to hear from you! Was thinking about you as I've had Cryo- and RF ablation 2 weeks ago - 4 hours under general anesthesia. Cardiac catheter lab is quite fascinating but also scary place, speaking as a patient. Hope your surgery goes well and you'll be back on your feet, pain free at last! Keep us posted!

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Thanks my good friend !! Tell us about your ablation! Everything go ok ?

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According to the doctor (Brett Faulknier at the Indian River Medical Center, Vero Beach) it went well, I've had PVI cryoablation in left atria and RF for atrial flutter in the right one. Except for 1 run of 12 hrs afib the day after the procedure, so far the heart has been in sinus rythm, with some ectopics, though I am still on Flecainide, but supposedly it takes time for things to settle down. Have some soreness in esophagus behind sternum, not sure if it needs to be addressed, hope it will get better as the time goes.

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Im sure you must be very sore. That's a lot of getting poked! Glad it went well and hope you feel better soon!!

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Thank you for your post. I saw you mentioned Dr. Robinson and was sad to hear of his passing. He was a kind and dedicated Doctor. I did try the amino acid treatment but it caused stomach issues so I had to stop. Now I am on mucuna and B1.

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He was like no other physician I ever met before! Truly one of a kind .

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He also got me on low dose Lithium, which has been a miracle for brain fog and anxiety. Just 10mg a day.

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lithium orotate?

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Yes! I swear by it.

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Dr. Laurie Mischley is studying it now. She just tested my hair and I am going to have a discussion with her April 8. Lithium Orotate is going to be a topic. I used to take it but stopped. I just started again today. Thanks!

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I think you might like this book – "Nutritional Lithium: A Cinderella Story: The Untold Tale of a Mineral That Transforms Lives and Heals the Brain" by James Greenblatt, Kayla Grossmann.

Start reading it for free: a.co/2Dcx4Qt

There's a big section on pd!

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Thank you! Good luck with surgery. I've had herniated discs in my neck twice and it hurt like a mofo. I'm hoping you find real relief!

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Thanks my friend!!!

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Would you please tell me what your regimen is with mucuna and B1? What brand of mucuna do you take? How much and when? How much and when do you take the B1?

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Every case is different so i hesitate to advise on dosage. I took 200mg L-dopa equivalent 3 times per day of mucuna. I no longer take it. I forgot which brand. Source naturals i think. B1 is vitacost or solgar brand. Must be thiamine HCL.

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Good luck with your surgery! My mom had a laminectomy perhaps 30 years ago, she's now 98 and still going strong. I remember the pain before her surgery, it's horrible. I also remember her telling me that she felt amazing relief from the first day post procedure, I hope you have the same experience!

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Lord, I hope so! Thanks for the encouragement my good friend !!!

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im glad you came on today bass as i just read about the laminectomy i never knew about that ill go and see my doctor and ask him tomorrow about it or some other type that will put a block on the pain.we all know were you have been. pain killers do nothing for me keep up the good work as we all need help sometimes with the pain.regards john.

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John, thank you ! Please keep us posted on how you do with that! Good luck my friend !!!

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Good luck my friend.

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Thank you very much !!!

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Wishing you the best, basso, for a successful surgery, that will relieve you of your pain, so that you can get back to enjoying life a bit better!!

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Thank you feel my good friend !!I need it!!

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Sending healing thoughts and prayers to you. I have missed your posts. Thanks for connecting with us. Best wishes as you receive your new body on Wednesday!

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Thank you so much for the well wishes my dear friend !!

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Excellent post bassofspades ! And after the operation you have to search a good

physiotherapist or personal trainer to build up slowly the "intrinsic back muscles"....

So no Hinz protokoll anymore, but B1 (how much ?) and Sinemet (how much ?)....

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Good advice my friend! Will do!!

B1 at 1500mg per day

Carbidoopa Levadopa at 25/100 , 2x per day.

Yes, no more amino protocol for now. After the surgery, we'll see how it goes. I might at least take the cysteine again for glutathione support. I will definitely keep you posted!

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Thinking of you and wishing you good results and speedy recovery from your surgery.

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Thank you my dear friend, it means a lot to me !!

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Sorry you've been having such a bad time, bassofspades, and praying you'll be much better soon.

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Thanks very much my good friend!

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Bass, you were one of the first people who reached out to me on this site. I really appreciate your kindness and helpfulness. Best wishes always, my friend!

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Thank you my dear friend !

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Just be sure it’s not cauda equina. Run to surgeon

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Amen to that! It is definitely not cauda equina. I am still very much continent!

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Best of luck with the surgery bass, wishing you a speedy recovery.

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Thanks my friend!! I really appreciate it !!!

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I had spinal fusion 6 months ago of vertebrae 4-7 because I had 2 collapsed discs and a vertebrae that was out of alignment which caused lower back pain, numbness & pain in my left foot. The surgeon said that it was no wonder that I had back pain for so many years because my spine was bone on bone. I felt immediate relief from the pain and almost all of the numbness immediately after the surgery. So I believe you are on the right path and will be very happy with the results.

Just one suggestion because they probably won't want you doing any bending for about 5-6 months until the fusion heals. Go buy one of those grabbers that you can use when you need to pick something up off of the floor. My friend got me one that has a long collapsible handle which helps me pick up anything that isn't really heavy. You can probably buy them at the pharmacy or maybe online.

Take care and good luck!

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Great advice! Thanks my friend!! Glad it worked for you.

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Getting a laminectomy & discectomy

Were the best things I’ve done!

Good luck with ur surgery...hoping u have an easy & full recovery.

Also, welcome back to the dark side!!

Lol

Be well

C!

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Lol! Thanks for the encouragement ! I really appreciate it!!

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Hey! Great news ! I am one week post op and doing great! I walk without any pain now!

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I am very happy for you! Bassofspades😊

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Yay! So happy for you friend!! 😊💫

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Congratulations bass!!! That's very good news! The best anyone could hope for!

Art

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Glad to hear you are doing well

Kia

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