For those who care for someone with Parkinson's disease
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| My hubby is scheduled for lung surgery this coming Thursday. After CAT scans, Pet scans, and finally a biopsy they found a malignant tumor about the size of a 50c piece. They are going to do robotic surgery which I understand is simple and he should be back home in a day or two. Hoping all goes well despite his age and PD |
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Poollady, I will be thinking of you and hoping that the outcome of the surgery is positive. We have been through several back surgeries since my husband was diagnosed. The PD adds one more worry to an already super stressful situation, but I found that the doctors and hospital staff were very conscientious about PD meds, etc. You will be in my prayers. Catlady |
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| Thanks Catlady I know you've been through a lot as well. And hugs to all of you on this forum for understanding. |
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Pool lady My thoughts are with you. I hope he does well, and that the anesthesia is mild and does not give him trouble. VV |
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Good luck with the surgery. I hope all goes well. My husband had lung surgery in 2015 because of a mass in his lung. He was in ER for something else and the mass was discovered early thank goodness. They did a PET scan to determine if cancer was anywhere else. Fortunately it was contained in the lung the lower right lung. They removed it and said it was stage 1 so we got in in time. He didn't have to do chemo or take any medication. It was very hard on him and was never quite the same from then on. He had been diagnosed with PD in 2007 so this was 7 years in. Your husband's procedure sounds like it won't be as hard on the body, which is good. Take care. |
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| Thanks Lynie It sounds pretty similar to what your hubby had. Hopefully they've caught it early enough and it hasn't spread. We did the pre surgery consult this morning. Everything seemed to go smoothly. Surgery is scheduled Thurs morning. Will keep you informed. |
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Pool lady Thinking of you. Hope all goes well. |
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| Just to let you know the surgery went really well yesterday. He's already back home and doing fine. I asked him if he needed anything and he said "A good night's sleep!" |
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| So happy to hear this. Give him a big hug from all of us, oh and one for you too! |
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Hello Poollady, So glad to hear that surgery went well. What a relief for you. Sounds like you handled this beautifully. NoMatterWhat |
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Thanks NMW but it's still challenging. He's fallen twice in the middle of the night trying to get up to pee even though he has a urinal. And I'm just not strong enough to pick him up. He's scheduled for home therapy starting tomorrow. I hope they can help. |
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You may try products at night so he doesn't have to get up. They have nighttime products for men. I had to resort to that for my husband as he had no control. You don't what to try to lift him. If he does fall and can't get up call the ambulance. Or if you can get a super pole that he can hang onto, then that would also work. The Super Pole are from the floor to the ceiling (on a spring to hold it there) with a moveable arm. Also a railing on the mattress would also help for him to hold onto. We also have a super pole by the shower. The occupational therapist should be able to direct you as to where to get these items. We have a store called Motion Specialties in Canada. I kept the items in case I ever need them. My husband passed away almost 3 years ago this month. |
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| Before my husband went into long term care he had a portable toilet beside the bed so that he did not have to walk to the bathroom. Getting him to use the urinal was tough either he would forget or he would let it fall. Later on he used the product’s although sometimes he would forget and try to get to the bathroom. |
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The pole sounds like a good idea. I will check it out. The therapist was supposed to come today but the weather (ice storm) is preventing it. He gave us exercises to do but hubby is resistant to do them. Anyway thanks everyone for the encouragement and kind words. They help a lot. |
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There is a link www.waltonmedical.com that shows the Super Pole. The man sitting on the side of the bed and holding unto the pole. This is a Canadian company so maybe you can show the Occupational Therapist so they could find out where one would be available for you in your area. |
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| We have a pole by the bedside and by the tub as well. It can be tensioned into place or also screwed into floor ceiling. We bought in on Amazon, and it is quite heavy duty: https://www.amazon.com/gp/product/B00N1GQXII/ref=ppx_yo_dt_b_asin_title_o05_s02?ie=UTF8&psc=1 |
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| We have been having a Physical Therapist coming to the house helping him with exercises. He (the PT) recommended a bed rail and a toilet riser. He also recommended a bedside commode which we have. I think all of these things will be helpful. |
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| Just wanted to let you all know. Hubby got really good news yesterday. The robot got all the carcinoma, NO sign of cancer now. However he has a chance of getting again so will have to get tested at least every six months from now on. |
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Poollady - so glad to hear that the surgery was successful. Sounds like he is doing well. How are YOU doing? VV |
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| I'm doing OK, VV thanks for asking. We are going to try to get away for a short vacation starting this Saturday. |
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Hello PoolLady- Wondering how your little vacation was. I hope it was a good experience and that you are glad you went. I am wondering if there is any way my husband and I could get away even for an overnight somewhere. Learning about your experience and any unanticipated issues would be helpful. Most of all though, I just hope it went well for you both!! NoMatterWhat |
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It went well at least for me. DH didn't seem to enjoy it as much. Part of the problem was (and still is) this" Right after the surgery we had a physical therapist coming to the house a couple of times a week to do exercises. As long as the therapist was coming, he was doing great. Much better than I expected. However he was (and is) supposed to keep doing the exercises. To strenghthen his core and to help him walk better and just be stronger overall. But no matter how much I encourage him (I try not to nag) even though it sounds like nagging to him - he just WON"T do them. And he wonders why he can't do things. [ As an aside] We returned Friday March 11 from 80o weather and returned to the Cleveland airport. The service driver had to drive home in a blinding snowstorm. We woke up the next morning to 6" of snow on the ground. Three days later it was 70o. Welcome to Ohio!! Anyway I hope you and your loved one can get away for a while it will be good for both of you. |
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I was wondering if you can afford to take him to Physical Therapy clinic twice a week. I have benefits from my husband's employer which pays for $25 each visit. My husband passed away but I still get the benefits to use when I go to physio. The whole treatment cost $60 but the $25 is returned. If you don't have benefits of any kind, hopefully you can still take him, if he would go. I know it's difficult. My husband didn't like going to exercises for PD which would have helped. Or another idea I had is a support group for PD. Sometimes they have a exercise group that maybe he could join. It would be something you could investigate. |
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| Thanks, Lyinnie2 but I doubt he would go to PT. He has gone through the Loud and Proud program a couple of times- Medicare pays for it I think every 6 months. But he doesn't want to do that either right now. I think he thinks there's a "magic Pill" that will make him better. |
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I know how you feel. It's difficult to make them do something that you think will help. My husband didn't like to go to the PD support group. I went more often than he did and I finally quit. He also didn't want to go to the exercise group. Keeping active is the most important thing he can do, if he just would realized that. My husband was 6 feet 3 inches and had very good posture when he was younger and even in Cadets. As a result of PD, his posture, especially his head was bend forward and so he couldn't stand tall anymore. He didn't do any exercises and his back also hurt if he bend over too much. He didn't have any energy and tired easily so that made it difficult to want to do things. If you could just explain to him that he isn't helping himself by not doing things. This disease is a progressive disease and if he doesn't keep active than it can get worse sooner. |
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| Boy, are you right! The hardest part is getting the PWP to help themselves! |
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I feel fortunate that my DH is actually pretty good at exercising — at least so far. He walks every day and has just started Rock Steady Boxing and plans to go 2x week. I find it strange though that I am the one doing all of the research. I found the RSB class for him. He is on the Internet all the time, but never looks up anything about PD unless I specifically point it out. Wouldn’t you think he would be researching this disease himself? Maybe it’s just the general PD apathy I’ve been reading about. Or, maybe he just doesn’t want to face what’s coming. I don’t know. If it were me, I like to think I would be taking every class out there and learning everything I possibly could to slow the progression of the disease. Just wondering, is Loud and Proud the same thing as LSVT Big? If not, what’s the difference? How do I find out what Medicare will pay for — just call the insurance? Does he need a referral from a neurologist? |