Husband with Parkinson's

[leslie2234]

My husband is 65 and was diagnosed with Parkinson's in 2016. Before this, he was told he had restless legs! He also falls back when he gets off the couch or chair. He is very depressed and thinks he is going to die soon. He scares me!

[Hidden]

No need to be afraid now. Read my HU profile.

Follow my example, please.

[jeffreyn]

As you didn't ask a question, it's hard to give you an answer.

PS. You can see RoyProp's profile by clicking on his name.

[Ramondo]

Tell your husband he is not about to die, my pd started with restless legs ten years ago, week legs, poor balance, lethargy, and falling over are all a part of this debilitating disease that I am still battling, but it ain’t killed me yet.

[Dstewart]

Try him on magnesium, my hubby on it restless legs and jerking now improved.

[rhyspeace12]

My husband had restless legs when he was 20 years old. We have now been married 58 years. Parkinson's doesn't kill you. It might be miserable at times, but you die of something else.

[Hidden]

Please take him to a psychiatrist.

[gwendolinej]

Hi Leslie, I assume you are seeing a neurologist whose is expert in pd. My husband was diagnosed with pd in 2011. After finally getting his meds right, which included the Neupro patch (the turning point in his case), he has been well up till now. This drug (Rotigotine patch) is also used to treat restless legs. My husband also had restless legs for many years ( as did his mother). His meds have stopped working and he has had a new drug added :Xadago. It's in its 4th trial. AND ITS WORKING 👍👍👍. He's up and functioning again This site is very supportive. The more you know the less scary this disease is, I find. We are also starting on B1, with B Complex.

[Despe in reply to gwendolinej]

Hello gwendolinej!

I asked our Vanderbilt MDS to prescribe it for my husband, but he said it is too expensive. Although we have health insurance and a good one, our copay would still be enormous! May I ask where you are and if you pay what the cost is? He (MDS) did prescribe Azilect, the brand name, and our copay is close to $200.00 a month. Thank you.

[Jumex2017 in reply to Despe]

I pay $200 us per month to buy on ur own in Hong Kong for my azilect . I believe it’s free in uk . Where are u?

[Despe in reply to Jumex2017]

US.

[gwendolinej in reply to Despe]

I’m happy to say we are in Australia, where we have the best health system in the world. That doesn’t help you. We have the PBS (Pharmaceuticals Benefits Scheme) which is a Government subsidised scheme. Once a drug is accepted by the authorities, the cost is dramatically reduced (from approx. $90 to $39 for 28 days supply). If you have a health care card or are receiving a pension of any sort (low income), the cost is $7. We do have a private health, which is expensive and covers hospital stays, Physio, chiropractors etc.

Alan’s first symptoms was that he had complete inertia.. lying in the bed looking at the wall. It was first diagnosed as depression, then Lewy Body dementia. Madapar wasnt doing much. Then a few weeks (maybe 6-8weeks) on the Neupro patch, he was back to normal. It doesn’t work like that for everyone. I hope you can get your husband on his feet. If he’s depressed, he won’t feel like doing anything positive, exercising etc. Maybe try the B1. Good luck. I know how you feel.

[Despe in reply to gwendolinej]

Thank you. You're lucky you have such a good public health system. In the US, medicine is just another business with PROFIT in mind. Unless you have insurance and pay your copay at the doctor's office, you are doomed.

My husband has been on B1 injection protocol for almost a year. We have trialed his dose numerous times, but we haven't found the right one yet, don't know if we ever will, although he responded the first time and believed he was "normal" again. I know he is depressed or still in denial, but hopefully, Dr. Mischley will be able to help him. It's been only a week since he started Azilect. Hopefully, that will help him, too. If wasn't for exercising hard all his life, he would probably be in a worse shape. He was only diagnosed last March, but symptoms started many years before officially diagnosed. I know Lewy Body is different than PD, although most PD patients do develop Dementia many years down the road, at least that's what I have read.

May I ask how old is your husband? Mine is early 70's. Yes, Neuro patch is not for older people.

[gwendolinej in reply to Despe]

Alan is 79. I don't think they can say that it doesn't work for older people. As we see on this site, what works for one doesn't work for another, including B1. Alan was attending the Movement Disorder Clinic at the Royal Melbourne Hospital, which has a number of neurologists, all specialists in PD. The great thing about this is that they talk to one another about the patient. They didn't know what to do with Alan. One of the neurologists said that he'd like to try the patch. He'd seen it work. Later he comment that "he'd never seen it work like that". It's worked till now and with the Xadago he's now on, and/or the increased dose of Madapar), it could still be working. As I've probably mentioned, Xadago is a trial drug to be taken with levodopa when levodopa (Madapar) is 'nt working properly, which it never has.

I'm learning Bridge at the u3a ( to try to help my memory). One of the other students (probably late 60s) has PD and has been attending a Movement Disorder Clinic, which has given her lots of advice on helping her walking etc, which WAS very unsteady and she had the Parkinsons Shuffle. She is amazing and driven. She does a lot of walking ( to music). She says she has to "talk "to her feet every time she starts to move, so that she doesn't shuffle. She is doing line dancing, strength training and more. She says, if she's not doing these things, she is in the garden. "I'm not prepared to sit for too long" she says.

We are seeing the neurologist from The Movement Disorder Clinic privately now. He is quite young (40ies) and thinks outside the square, which you have to do with PD.He still wants us to attend the Movement Disorder Clinic to get another opinion. All the doctors at the clinic have their own practices. We love him. If your doctor doesn't have an open mind, get another one, I say. If he doesn't think the patch works on older people, I'll give you the names of my neurologist and others at the Clinic, who will confirm that it does. Feel free to keep in touch.

Gwendolinej

[Despe in reply to gwendolinej]

A lot of good information, THANK you. You are in Australia, we are in the US. His Vanderbilt MDS is also young, very sharp, and out of the "box." He is very receptive to natural L-dopa such as Mucuna Pruriens and Broad Beans. He prescribed Azilect, Lodosyn and carbidopa to take either one with Mucuna Pruriens. Lodosyn is extremely expensive, so we got carbidopa. We never discussed Neuro patch, it's something I believe I have read.

We have also started consultation with Dr. Laurie Mischley, and we are in the process of various tests but haven't gotten the results yet.

Pardon my ignorance, what is u3a?

[gwendolinej in reply to Despe]

The University of the Third Age is an international movement whose aims are the education and stimulation of mainly retired members of the community -those in the third ‘age’ of life. Highly qualified retired teachers volunteer their time. Cost $70 a year. It’s fantastic. You can learn anything from exercise groups, dancing, languages, painting, bridge, discussion groups, history, and lots more... (even how to use your mobile phone), anything someone is prepared to teach. It’s a worldwide movement. I think there are similar groups around the world under different names too. I learn bridge (very taxing on my poor brain) and I have two walking groups. I thought it existed in the USA, but I googled it and got no result. Canada, UK, Europe, everywhere but. The great thing is that we are all older, so possibly slower to learn.

Gwendoline

[Despe in reply to gwendolinej]

Thank you! Indeed, we are all getting older and need more "brain" exercises. Too bad there are no movements like you described in the US, at least none where I am.

[gmunsot]

Dear Leslie: I am 74 years old and have Parknson about 6 or 7 years ago and I'm still here. My recomendation is SWIM and SWIM and use the walking machine. I'm not sure if is the correct name but I don't speak English only a Little.

Since the first day until now I take 4 times a day, half Sinemed pill.

I wish you vey good luck and enjoy swimming.

Ponty

[leslie2234]

Thank you so much for your comments, I will show this to my husband. He did say that he will join this group I notice A lot of people talking about taking B1, does it help?

[Jumex2017]

My husband will be 65 and was diagnosed in 2017. Very much so he falls back when he is getting up. Ask him to put his legs apart , bend at an angle , press his knees with both hands to help get up. Up to now I have been training my husband . Sometimes he follows Ang most times he doesn’t,

[DelawareGirl in reply to Jumex2017]

"Nose over Toes" when standing up seems to work well for a lot of people!

[Stazina]

Assure your husband that he will not die from the Parkinsons; its important for him to see the Neurologist to discuss the Depression as this is quite common with this disease and there are quite good Antidepressants to help. I'm assuming he's falling back onto the couch due to dizziness? An adjustment to the way he stands up could help; slide to the end of the seat and he needs to keep his head up while standing up as this will reduce the dizziness.

[grandmama16]

I understand how you feel about this. I'm 75 and hubby 76. he was dx around 2013. He only takes 2 generic Sinemet at night. Sometimes a secondary, Resigiline I think, if he feels he needs more help tho I've thought it may cause increase blood pressure. He only goes to Nuerologist if he needs more Sinemet, like after 4 mo. refills. I think he's doing pretty well, tremors are a lot less. I took video of when it was bad. He is having trouble rising from his chair so he just concentrates and pushes on arms of chair, then waits to get going. It's called freezing. Also we have a 3 prong cane beside our chairs. I need it for Fibro. He has had trouble getting his legs into bed and I push on his back to get him out. Things come and go with PD. We went to exercise classes for PD years ago but it got pricey, tho we know how to do them...like taking big purposeful steps to help control walking. I suggest doing that or Rock Steady boxing which I would love to try but too far away. We both have to pay attention to our walking. He has a stationary bike in basement he uses and he can actually do basement steps better than I can. Try to keep yourselves going and be healthy otherwise. We have a dog to walk and play Cribbage with his sis once a week but we've slowed down on other things. He loves computer word games and game shows on T.V. We go to a PD support group once a mo. which gives a lot of info but I can understand your or hubby's depression. I've taken med for it for years. I hope your hubby will have a good relationship with Drs. Mine doesn't. Only goes when required. When first dx he went to our University Brain disorder clinic and they were good but too far away so have local Nuerologist. Biggest problem is double vision we think he developed after cataract surgery 3 yrs. ago. He's had a CT scan and will see what eye surgeon says in a week....could be an affected muscle which causes eye to be off. Getting older is part of our symptoms too. Just feeling useless and no incentives or energy even with grandkids graduating college, married, having kids. Good luck to you both. M.A. in USA