Husband with Parkinson's getting steadily worse now, particularly balance/walking. Diagnosed 5 years ago, probably had it 3/4 years previously.
The problem is that he now needs total knee replacement for both knees. We have a very long awaited appointment with Neurology nurse in October to discuss the wisdom etc of undergoing the surgery.
He is 77 years old and has quite frequent falls and requires assistance with alot of day to day activities although he really enjoys going out to play Bridge and Whist.
We are both concerned about the effect of major surgery on the progression of PD. He could put up with the knee pain with painkillers when necessary but of course we then have the constipation problem , made worse by Parkinson's itself! ( It's a great life 😬🤔....)
Are there any of you lovely people out there who have/are suffering with this predicament and can give some advice please. I am , of course, his carer and approaching 80 myself.( I also have been assessed to have TKR but have delayed this as quite honestly I could not cope with looking after husband and myself! I just carry on taking the tablets and try to keep myself fit)
Many thanks in advance !
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Jalia
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hi Jalia am 70, diagnosed in 2015 with PD. I feel I am progressing and have experienced most PD symptoms, both motor and non motor. I am bone on bone in my left knee. Very painful walking down stairs. Gel and cortisone shots no longer ease the pain. Both my orthopedic surgeon and MDS agree that I should replace left knee sooner rather than later. Rehab (exercise and stretching) after knee replace is key to recovery. Doctors feel the longer I wait, the harder it will be to exercise and move to rehab the knee because of disease progression. I live alone and have scheduled my knee replace surgery for 8/27. Fyi, in case u weren’t aware, Parkinson’s foundation has some great info on hospital stays for PwP.
Thank you for your reply Jmellano. Husband has been told its too far gone for injections. We have recently had stair lift installed so he doesn't have that agony.
I shall look into the info you have provided.
I hope your procedure goes well. Are you having spinal anaesthesia? I would be very interested to hear how you get on.
i believe I will be getting a local because of PD, the link I mentioned above has some great info on being a PwP including anesthsia and medications to avoid . I will update with my experiences when the dust settles, probably end of next week.
Julia, I has the surgery last Tuesday and rehab is extremely painful, I did do doctor prescribed exercises before surgery to strengthen and prepare the knee for surgery. Doc went with local anastethic because of my Pd.I mostly took Tylenol several times per day-and that did a decent job of controlling the pain. Occasionally I took oxycodone for the pain and controlled constipation with miracle x. Most importantly, ice was my best friend. It helps to reduce swelling an pain. I have no regrets with my decision and would do it agin
I am 71, diagnosed 10 years ago and had a Total right knee replacement one year ago. Before the op I had great difficulty walking(bone on bone), getting in and out of the car and the pain in my knee kept me awake during the night. I had several months of physio before my op. I take my medication(Stanek every 3 hours( five times a day 7.30am ,10.30,1.30,4.30 and 7.30pm). I was worried preoperatively about how I would manage as any stressors seems to exacerbate my PD symptoms.
Before my op I spoke to the anaesthetist and was offered an epidural anaesthetic and sedation. I was advised to take my Stanek with me to the pre op anaesthetic room before my op . I had my 1.30pm dose(my own tablets) in anaesthetic room then had my op (which was completed before my 4.30pm dose was due). I had my 4.30 dose in the recovery room. In the ward I was helped to the toilet(wheeled commode) a few hours later. I had been given pain killers into the joint cavity during the surgery (which helped enormously).
I was seen by the physio the next morning, had two crutches and managed very well. I was assessed on the stairs in the afternoon and was told to just use the sticks. I was discharged home within 48 hours with two sticks! continued on Naproxen(which I had been taking pre operatively).
I cannot emphasise enough the importance of doing the physiotherapy exercises faithfully before and after the surgery. One week post op I managed with only one stick. I religiously continued with the exercises for a few months. I now have no pain in my right knee, Hallelujah! The only unexpected thing was the amount of bruising from my toes to my hip after a few days which lasted for a few weeks.
Since the op the pain relief has meant that instead of taking Naproxen and Omeprazole on a regular basis I now only occasionally take 2 paracetamol tabs at bedtime.
You will be given a booklet advising you about other issues for example, getting in and out of bed and contact details of who to contact should any problems arise.
I was seen in the Out patients dept at 6weeks, 3 months, six months and was discharged at my 12 month appointment.
I do hope my experience is gives you some insight as to what might be ahead for your husband. Of course PD brings its challenges and not everyone responds the same way to an anaesthetic. You and your husband should discuss any concerns you may have about his proposed op with the medical and nursing staff at the pre op assessment clinic(It's a good idea to write any questions down).
For me the op did not affect the progression on my PD in fact the quality of my life has improved as a result of the pain relief.
I am sure Jalia that your husband really appreciates all the help and support you give him. At 80 years it seems to me you are doing a marvellous job especially as you are in need of a TKR yourself. My husband and I are approaching our Golden wedding anniversary.I just take each day as it comes. It's a real pain taking medication for PD every 3 hours, but it is what it is.
My advice is take care of yourself, take any offers of help given. I made sure the freezer was stocked in advance! Online food shopping has been a godsend, one less thing for my husband to worry about. The delivery drivers carry our shopping in to the kitchen and we have continued online shopping ever since.
Sending you a virtual hug and my very best wishes to both you and your husband.
Thank you so much for your lovely, inspiring reply. I feel there may be hope.
I wish my husband had your attitude but he is so negative and now suffers panjc/anxiety attacks as well which are so distressing to observe. I feel helpless but have arranged for him to have counselling/ Psychotherapy sessions and hope these will help.
He is on Sinemet and Entacapone taken 4 hourly. I'm concerned about his balance and how he would cope with movement. He has lots of freezing episodes. He also managed to fall out of bed 5 times on our recent 4 night break!
We will have to see what his Neurology nurse has to say in October .
if you do go ahead it is important that the anesthesia doctor is aware of the best form of anesthesia for people with Parkinson's. We printed up this article and took it with us when my husband needed anesthesia to have a colonoscopy and endoscopy. It went fairly well with one exception. Something about the colonoscopy prep seems to have upset his digestion but now things are starting to improve. The good news is the GI doctor says he will not have to have either of these procedures in the future.
Regarding your husband falling out of bed when you were away; I now take with a travel/portable bed rail in our luggage. It just slots together easily and I put it under mattress so my husband has something to hold onto when he gets up in night and also, stops him falling.
We did take a bed rail but it wasn't strong enough. The main problem was that the bed had a very soft mattress so sitting on the edge gave no support. He is used to a very firm bed with proper bed rail at home.....and walls like a climbing frame 🙄 This was a 5 star hotel and the best that they could supply in the way of an accessible room.
Ì had a total knee replacement in February 2020 just before lockdown. I had been misdiagnosed in February 2019and told it was a soft tissue injury because the pain had come on very suddenly after playing table tennis one day . 8 months later , because I couldn't get any joy from the NHS, I decided to see a private consultant. He was excellent. I had a trip to New Zealand planned to visit my daughter and family so he gave me a steroid injection there and then, in the hope that it would be effective and enable me to take my trip. Unfortunately it didn't give me any relief so I went back to him to say ì wouldn't go to NZ, but spend the money on having the op privately. However, having had the injection I had to wait 3 months before I could have the op! The consultant, very wisely in hindsight, told me to go on holiday and he would do the op when I returned on the NHS. Covid struck, but I had had my new knee before lockdown, but I couldn't have the physio. However, I did exercise and was pain free and walking in a couple of months. I didn’t have a general anesthetic, just the epidural and being sent to sleep. I was also allowed to take control of my pd meds whilst in hospital. You do need to have a positive outlook on life when you have pd, not easy but negativity just pulls you down. Get supportive people around you. Has your husband tried Nordic walking?
Wishing you all the best, whatever decision you make. X
Thank you so much for your very helpful reply.I do so agree with your mention of positivity . I try to instill this into my husband. I am the positive one.
I'm hoping that meetings with his Psychotherapist are helping in this direction. I believe that they are. He took a long time to accept the diagnosis as he was working until 71 with a physical job as a building foreman. He has always loved his work and said that he would never retire. I suspected Parkinson’s and it was some time before I felt able to broach the subject.
I have mentioned Nordic walking in the past to him. I will try again! He has got the poles which he sometimes uses for 'normal ' (??) walking. We have an exercise bike, punch bag and gym quality treadmill set up at home all of which he uses daily.
I had hip replacement 2 years ago with spinal block. It really is the way to go. Would you believe that I've been given the go ahead for TKR also but that's another story!
Life is a roller coaster (keep on riding ....!) 🤔😀
Joint problems are often thae result of eating inflammatory foods like refined vegetable oils and the ingestion of plants which consain mild toxins which although they do not have an immediate effect can have serious effect long term if eaten regularly. The ultimate anti inflammatory diet is a pure carnivore diet containing only meat, fish, eggs and if tolerated dairy products.
My husband has PD but it was I who 8 months ago developed pain from knee osteoarthritis which was awful even in bed at night. I got an almost complete "cure" after 3 weeks of taking Rose-Hip Vital, 5 capsules morning and night, glucosamine sulfate 1500mg daily (though I don't think the latter was responsible) and following the advice from Dr David ... the physio on YouTube from El Paso Manual in Texas to do the various things he suggests to build up the gluteal muscles that help position the knee joint (not the quads). I know I've been losing muscle bulk especially in my buttocks and his argument is that the glutes need to dominate the quads. While the knee is sore and the glutes are weak he would not recommend walking, or a treadmill, Watch as many of his YouTube videos as you can - he believes you can avoid knee replacement surgery even with "bone on bone" arthritis. I haven't looked into the 28 day online program he offers online at the El Paso Manual website because I've gotten the relief I needed just from the Danish grown rose-hip supplement and focussing on my glutes (and maybe also from the glucosamine). I also eat a lot of flat-leaf parsley because apparently parsley is also very rich in the active ingredient that's in the rose-hip supplement and I also put some standard orthotics in my shoes to correct my flat feet as the El Paso physio thinks the knee pain comes from the crunch on the joint caused by the dominant quads, often with too much inversion of the knee - he recommends walking with the toes pointed out, like a duck. One very easy exercise he recommends is sitting on the edge of a table with legs dangling and then swinging the legs back and forth for 5 or 10 minutes at a time - like tail-gating on the back of a ute, to lubricate the joint and get nutrients flowing over all the joint surfaces. It's good fun, see if it helps at all.
Very interesting to read. Thank you. I also need knee replacement ( bone on bone) but surgery on hold until my heart problem stabilised. I had heard about the rose hip and indeed had bought an expensive supply. Unfortunately these interfered with the Warfarin I have to take so had to bin them.
Husband is taking so many meds that he would not add any more to his arsenal!
The type of exercises mentioned certainly sound worth a try.
I don't mean to browbeat you but the Rose-Hip Vital is really a food (fruit) rather than a medication - and your husband could try the powder I now use instead of the capsules I started with- a capful (the plastic capful is supplied with the powder) sprinkled on porridge or baked pear or apple sauce - tastes good and contains fibre so it's good for the gut. Rose hips do contain a lot of Vitamin C which could reduce the effect of your Warfarin, it's true.
I am 61yo. I had one knee replaced by Dr Herman Botero in Knoxville Tn. 2 years ago. I drove from Birmingham AL to have him do the surgery. Many of my friends from Birmingham traveled there as well. They highly recommend him. He is known for going in the “side” of your knee and performing the replacement in a manner that gives a quicker recovery. I would do it all over again knowing what I know now. I do not agree with those who say knee replacement is horribly painful. Even PT was not bad. I had surgery at 8 o’clock one morning, my husband drove(5hour drive) us home that afternoon and I slept in my own bed. They provide you with an ice machine that works wonders for recovery . I would do one knee at I time. That is just my preference . I started PT the very next day. Best of much to you both. You have to be able to exercise, otherwise your PD progresses faster.
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