I am so confused

I don't know how to help my husband. He's 69, had PD for 5 years, on Sinimet and Mirapex and also has Lewey Body Disease. His walking has gotten really bad the last few weeks to the point he can hardly move even with his walker. Neuro refers him back to family dr. who puts him on steroids which doesnt help. Family dr. refers him back to Neuro. What the heck? Don't where to take him or what to do next. Tried massage therapy, fitness center, physical therapy, meds and nothing helping. Been to 4 different Neuro's and getting no where. Trying to get appt. with a specialist is like waiting to win the lottery. Is this what PD does and what to expect?? I knew about the freezing episodes but didn't realize legs would completely stop working. Any suggestions out there?? I love this site - it has been so helpful - thanks everyone for your responses.

17 Replies

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  • Perhaps suggest some ''intensive'' Physio therapy and occupational therapy at your local hospital.

    I suspect your husband could also be suffering depression which may need treatment. do you have a local PD group? meeting other local sufferers may be of help

    Just a thought, I realise how awful it is for you I wish you all the very best.

    oldtyke

  • Hi Raven :-)

    My heart goes out to you both, you must feel like a pinball, being thrown from pillar to post. Bless you

    I agree with oldtyke but "demand" it and if you dont get anywhere....dont give up!!... threaten to complain to your local health authority...ruffle some feathers!!

    Ordinary people and experts alike need to realise that its not just tremors that we Parkies have to deal with

    Anyway I send you both my very best wishes and dont forget we are here for you

    Love

    Andy :-)

  • Raven, this must be very difficult for you and your husband too. As well as finding the best treatment for your husband i hope you have support as well such as from a local PD group.

    I cannot comment on your husbands medication but i recently spent a few days with a friend with PD and Lewy body disease. To keep active and functioning he took meds every 2-3 hours. I saw him shuffling almost stationary sometimes but i also went on a 2 hour country walk with him with no problems. He got very frustrated at times when he wanted to join in the conversation and couldnt get the words out that he wanted to say but if we waited and gave him time he usually suceeded.

    I do hope you both get the support and treatment you need at this time.

  • Has he been seen by a movement disorder neuro? They specialize in PD. I also suggest a PD Support Group. They are a wonderful resource for us. It's how we found hubby's Movement Disorder Specialist. Our first neuro was useless. I understand your frustration. We want what is best for our spouses/partners and feel their pain and frustration. A friend's MIL has Lewy body. and I understand she is doing better. I will try to reach her and get some tips from her.

  • Totally agree. Go,right to the top & don't give up. I go thru some of the same things your husband does. God bless you

  • I too have a husband with both P.D and Lewy body so I know what you are going through. We are trying accupuncture at the moment and it seems to help, although very slightly. It is a very lonely life now as he hardly speaks because he cannot get the words out and so prefers to keep quiet. We are going on a cruise for 11 nights but already I am starting to regret that we booked it as he has so much trouble with his bladder as well as all the other nasties wich comes with P.D. Friends say that it will be a break for me but I will still have to help him dress, shower and get in and out of bed. Worse part is that today is as good as it gets. We try to keep smiling, (but thats on the outside). All the best.

  • Thanks everyone for your responses, I really appreciate hearing from everyone as I don't feel quite alone knowing there is someone out there to talk to. I have tried the PD support group but he really didn't feel comfortable there as most people had slight tremors and not mind issues. He exercised, played chair volleyball and tried to talk to people but couldn't understand them so he felt out of place and didn't want to go back. Have also seen a Neuro who specializes in movement disorders as well as mind issues but he did the diagnosis and said we didn't need to come back to see him unless we wanted to which told me there wasn't anything else he could do. I am considering reducing some of his meds on my own to see if that would help. Who knows, maybe he is receiving too much medication. Been searching for another dr. but movement disorder specialist are hard to find - at least the ones our insurance covers. Taking one day at a time. Good news though - there is a Parkinson's 5K run/walk this Saturday and we have a team of 19 people entered so far and have raised over $600. Looking forward to the event.

  • Hope the mopnwy you made makes a big difference in helping research a cure- Great job!

  • Are you in the US? Please let me know, as if you are I have some things to share which may help.

  • Yes, we are in Ohio. Any information would be appreciated - thanks.

  • Why not have your doctor give you a referral to a home care agency for physical therapy. This way your husband can get physical therapy at home. Hopefully they will also provide some assistance with bathing. You might want to try a homecare agency that has therapists certified in LSVT BIG, which is specifically for parkinsons. Are you too far from Chicago? Great neurology/movement disorder group at RUSH. I will give you info if it is close enough for you to go. You might also want to try heat applied to the legs, especailly when he first gets up. Stretching excercises before getting up ur walking can also help. Hopefully you will be able to get him physical therapy. Let me know how you make out.

  • Raven,

    I understand why you are so overwhelmed. I have gone thru the same up and down stages. Our movement specialist stresses a few things. Mirapex cannot be cut down except very, very slowly. Titrate is their word. Also, these Rx work differently when PD sufferer is A. HOT, B. HUNGRY C. TIRED D. STRESSED E. HAS INFECTION F. EATS too much PROTEIN. When the stiffness and freezing comes and goes it usually means Rx wearing off too soon. Thank God for this forum. It is my support group.

  • Thanks for the information. Visited his heart dr. yesterday and he said to find another Neuro for a different opinion or go to Cleveland Clinic for evaluation. Heart was fine although he has lost 16 lbs. since April 30th because of loss of appetite, no energy and fatigue. Had to use his transport chair as he couldn't make it with his walker. I love this forum also as it has been a big support for me.

  • Raven-

    PD doesn't make fast changes for no reason. Most commonly are medication changes (new ones, dose change, dropped old one, etc) and infections (especially urinary tract and dental since they can be hidden). And too much of a med can, indeed, be as frustrating as too little. Finally, something that has helped my weakness issues tremendously over the last couple of weeks is a health food store product called carnitine monohydrate. Athletes use it for energy and to build muscle. It is also in clinical trials for PD.

  • Uh, sorry, that's CREATINE monohydrate.

  • The Cleveland Clinic is one of the best -

    I can tell you my husband is the exact same way with the legs not working - yes alot is about taking the same amount of sinemet but taking it more frequently. lets say he for example takes 2 tabs at 8-12-4 he could try taking 1 tab every 2 hours and see if it helps. just an example.

    therapy in my mind WILL NOT HELP - he needs more of his meds

    Time may of come where he needs the scooter now - nothing wrong with that if thats the case but you have to be sure of whats going on.

  • Hi Raven,

    I have had Parkinson's for 11 years now. I experience stiffness every morning so severe that I cannot walk. I dropped taking Mirapex as it put me to sleep instantaneously while driving. I quit taking Mirapex cold turkey with no adverse effects. My neurologist prescribed Amantadine 100 mg twice a day, and it helped get rid of most of the stiffness. The supplement magnesium helped as well. I also started a class called LSVT BIG. It is an exercise program where you work with a physical therapist one hour per day for four days in a row for four weeks. It totally eliminated stiffness, freezing, slowing when walking through tight spaces, and the pain of being stiff. You can find out more on the internet. They also teach LSVT LOUD for people who have voice problems as well.

    Remember: we have Parkinson's, it does not have us...

    With best wishes for good health

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