Husband just diagnosed with Parkinson's So confused!

[Tiger101]

Well after a very long time my husband was diagnosed with PD. He was put on Rytary. He already has Ortho static Hypotension and side affects is dizziness. Sigh. He does not have any tremors. Hope you can help me with a few questions 1. Can someone please tell me how this medication is supposed to make him feel better? 2. He has pain in his hips, knees and very feet especially his toes are very sensitive. Has this happened to anyone else? 3. He moves slow, trouble sleeping through the night,has trouble tasting food, he feels confused and says head is cloudy. is this typical of PD? He has had to stop working and he cannot drive and has no real want to do anything. Thanks!

[Bailey_Texas]

Welcome

Rytary is extended release carbidopa levodopa and it replaces the dopamine that people wit Parkinson's lack. It can and does relieve pain, stiffness, and will help muscles to do what you want them to.

Requip also will help.

[Tiger101 in reply to Bailey_Texas]

Thanks, oh I hope and pray that the meds help him and give him some quality of life back. Greatful for this site to come to!

[arwenmark]

Some of the things you describe could be the medicine, figure out which he had before he started taking the meds. and ask your dr. about any after the meds.

Are his toes curling? or just sensitive? he doesn't also have diabetes does he, that could be the toes also, I have that very bad in toes, feet and lower legs, Have to take 24mg of Gabapentin and even that does not stop the pain but helps.

Try to learn all you can about PD. It can be very confusing. And it is different for everyone.

[Tiger101 in reply to arwenmark]

Thanks. He just started the Rytary today. Has had all of the symptoms described prior to medication. He only takes a small dose of BP med. Toes are not curling just pain and very sensitive. He was considered borderline diabetes before his weight loss. Before his diagnosis within the last two years or so they thought he had small fiber neuropathy. But found that was not the case after a skin test. He used to take Gabepentin and changed to lyrica neither worked.

[park_bear]

Moves slow and trouble sleeping through the night are definitely PD symptoms. Is the Rytary helping with these? PD causes pain by causing tight muscles, if that is the case Rytary should help there too.

Orthostatic Hypotension ("OH") can be caused by PD and also by a class of PD meds known as dopamine agonists, which would be contra-indicated for your husband.

[Tiger101 in reply to park_bear]

He just started meds today so I’m praying that he tolerates it and it helps him because he currently has very little quality of life which is so the opposite of what he used to be. That’s all he takes except a very low dose of BP medication.

[sharron2]

If he is on any other meds, check out that they do not contribute to the OH? If any do, see if you can eliminate or reduce them. My husband has prostate issues and we reduced and changed medicines and reduced his coffee intake (he drank a strong pot a day). We increased his water and juice intake to prevent dehydration.

He has learned to move slowly and hold his hands high above his hands to help keep the blood in his brain when rising from a seated position. He also keeps his stress levels down.

Most days his OH is much better than it used to be. Your movement specialist (pd neurologist) can prescribe medicine for OH if the problem persists.

My person with Parkinson's took a while to overcome his apathy(is not where he was before pd, and probably never will be). I kept encouraging him to help out where he could. Occasionally I got gently irritated at him and reminded him that I needed his help. He is doing much better and I am proud of him because he is trying. This is hard on both of us, but it is harder on him.

Stay on this site. You will learn a lot and get much needed support.

[rhyspeace12]

That sounds just like the problems my husband has with his Parkinsons. His first symptom before being diagnosed, was feeling cloudy (brain fog.)

[Tiger101 in reply to rhyspeace12]

How is your husband now? Is it better? If so what helped? Thanks.

[rhyspeace12 in reply to Tiger101]

He went through some hard times recently, hallucinating. He thought intruders were attacking and all but destroyed his room fighting them off! He fell and badly hurt his leg on an overturned chair that night . After three weeks the wound is healing. I thought i would go crazy, even being an RN years ago. He is 78. We got his meds straightened out , cut out some and changed the dosage of others. His thinking is still slow, but he can reason again and is much better. He has no tremors. He talked me into letting him drive and he did well until he tried backing up. He judges how he is by how well he can play chess, which he was always good at. When he was hallucinating, he couldn't play at all and now, yesterday, he tied in several games. He has lost 40 pounds in the last year, and now once again has an appetite. He has peripheral neuropathy but no pain. However, one leg swells badly. His medications taking wrong were the big problem. Now his main drug is Sinemet, both regular during the day and the extended version at night. His continual problem is insomnia which causes a lot of anxiety. He stopped being dizzy when he drank more water. Feel free to ask me any questions. Primipexole for his restless legs seemed to cause the most problems in hallucinating. Oh, stress of any kind lays him physically low, everything seems to stop working, including his brain. but, taking meds for panic made him worse mentally.

[rhyspeace12 in reply to rhyspeace12]

My husband's first symptom was brain fog too.

[mistydog1]

I've been on Rytary for 2 years now . It took a month or two to figure out the correct dose for me but it was worth it. I don't have any of side effects that caused me to switch meds. Things like painful dystonia, increased off time.

[lhart6387]

Is he seeing a PD Dr. or a movement specialist? Find one you are comfortable talking to, it took us 4 Dr.'s before we found one we liked. It makes a big difference if you have a Dr. that actually listens to you. My husband has leg and foot pain also but he also has Type 1 diabetes. He also has depression which he is seeing a Therapist for and it is helping a lot. Stay with this forum, it helps with your questions and even to just commiserate with other care givers.

[Tiger101 in reply to lhart6387]

He was seeing a regular neurologist and he sent him to the movement specialist. What does your husband do for his leg and foot pain?

[lhart6387 in reply to Tiger101]

He is also on Primipexole and he has started hallucinating. He is on Xanax at night to help him sleep. His sleeping has improved. If he ups his Primipexole it helps with the leg pain but makes hallucinations worse. He no longer drives.

[rhyspeace12 in reply to lhart6387]

i agree with the need for a good neurologist that will talk to you. Ours is "iffy". He'll be nice one day and terribly irritated with us on another. The first one wouldn't call back, and I saw on her references others complained of the same thing. I think once she got paid for expensive testing she didn't want him.She didn't tell us the diagnosis (wouldn't call back) and his second neurologist told him from looking at her tests results that he had Parkinsons. It was a shock! Our second neurologist left town with two weeks notice and took all his records with him. We are stuck with what our insurance will cover in our small town. We do have a good general practitioner but he can't prescribe Parkinson's medications. This forum is the best for getting good information from people who actually experience the same problems and then you can also look up a lot on the internet.

[clajac]

The apathy is a symptom of PD, unfortunately. If you couple that with depression, it is difficult for the PD patient AND the caregiver. I suggest making an appointment with therapist/counselor and/or get him involved in a PD support group (get one for yourself too - a caregiver support group). This can be very discouraging. Talk therapy can be very helpful. I know, because I am a therapist and caregiver for my husband who has PD. Be sure to take good care of yourself!

[MollyBear1]

My husband also has PD. He had all the symptoms shuffle laying lack of movement stiffness you name it he had it and when we went to see our neurologist the first thing he suggested was physical therapy. We've been doing physical therapy five times a week for four months now and he is a changed person. He is active moves well his depression is less all I can say a good things so if he's not doing physical therapy for exercise aimed at Parkinson's then this really may help him

[Tiger101 in reply to MollyBear1]

Thanks! He’s doing PT but I’m not sure if it’s aimed at Parkinson’s. They may make adjustments now that he’s been diagnosed.

[MollyBear1]

My husband takes it 5 times a wk.

[Tiger101 in reply to MollyBear1]

Thanks. I have to drive him because he can’t drive as of now with his OH. Does your husband take meds for PD? I work so I have to get him there when I can sigh. Does he have problems with orthostatic hypotension?

[sharron2]

Compression stockings can help OH. Also an abdominal support can help keep blood in the brain. Our cardiologist had my husband add at least a tsp of additional salt(at the table) to his food daily help retain water. As he has heart disease, diabetes (well controlled, thank goodness), enlarged prostate, Parkinson's and depression (well treated with sertraline and bupropion) we went through about 6 mos. to a year to get the OH improved, as we have so many doctors and so many meds to consider adjusting. It was definitely worth the effort as he is so much improved. He is currently (slowly) expanding our wood deck. He could have never done this a year ago.This is so much better than him sitting in his recliner or laying in bed with OH.

He and I were very persistent in badgering the doctors about his OH. We were both very discouraged when it was bad. While his OH is much better, it is not totally gone, but we can live with it as it is now. So hopefully your husband can get this under control.

We did not have to take a blood pressure increasing medication, but our next step would have been to use one if the adjustment of meds, change in diet and physical therapy tips hadn't improved things.

After he gets his OH stabilized, BIG therapy can help his Parkinson's. My husbands therapist refused to work with him till she was sure he would not fall down or pass out.

Don't accept things as they are. Keep advocating for him. For the doctors to try different treatments to get this under control.

[Tiger101 in reply to sharron2]

Hehe, my sister in law gave me a pair they use in the nursing home. You should have seen my husband and I trying to get those on. LOL My goodness they were so tight. He wanted them OFF and I made him wear them for two hours. I'm went on Amazon and looked up some. They have some that look like dress socks which should be much easier to get on.

[sharron2]

My husband hates those things too. They are available, but getting some one to wear them is a different problem. I wouldn't want to wear them either!