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Topic My the patient :( Go to previous topic Go to next topic Go to higher level

By Dazedandconfuse On 2014.07.16 08:36
I'm new to this website and so grateful that I found it. OK...I'm reading a lot about being angry at the PD and not the patient. Well, I have to tell you it's hard. My partner is truth always has been....he's a food addict. 5'11 - 260 and is medically coded...morbidly obese. About the time he decided to get serious about his weight (2 years ago) he was diagnosed. He could still walk but did infrequently. Now that window has closed. (shuffling is pronounced) He's satisfied gobbling a handful of pills (heart disease, HBP, PD, now injections of Apokyn which I might add I'm not seeing the effectiveness at least in him which scares me to death, experimental glutathione pushes and injections) and when I ask him about joining the Y so he can swim. He dismisses that idea and starts crying about having hope. I get it. I really do. But now I'm crying because EVERY piece of literature I read experimental, traditional or otherwise says MOVE MOVE MOVE! I'm starting to get angry. He is selectively "moving"...he gigs with his band, he'll take the trash to the street.....Anybody else experiencing this kind of frustration. I think I need to go talk to a professional.... :(

By carman96 On 2014.07.16 10:17
Welcome dazed. As we all know, you can't get someone to do something they don't want to do. Has his doctor talked to him about it? Lots of doctors just say lose weight and that's that. They need to tell the patient what really can happen if they don't exercise and watch their diet.
Sounds like he won't comply anyway.
The really bad part is the less mobility he has as the PD progresses the more he will need your help. My husband only weighs 150 and it's getting harder for me to help him if he falls or gets dizzy.
Definitely talk to a professional if you can because the anger will build and eat you up.
Good luck and keep posting.

By jcoff012 On 2014.07.16 12:09
Dazed...I have struggled with weight all my adult life and still am...I agree with Carman, you cannot make him do something (diet) until HE wants to do it...he needs to talk to someone about it...seriously...

I am a huge proponent of Weight long as I do it, it works...sometimes it is work, but most of the time it simply requires commitment and the willingness to walk...walking is a simple exercise...even for husband walks daily, does LSVT exercises, and uses weights up to ten pounds...that may not seem like much, but when he started months ago, he could only use 2 pound weights.

Back to isn't your Mother's plan anymore...we eat three meals a day and have two planned snacks...and we usually have a piece of cake or a muffin for lunch for dessert...and, if he doesn't want to go to meetings, he can do it all online.

Lastly, because there are many plans, not just WWs, he has many options...but HE must make the commitment...and, as for walking, when I started, I only walked five minutes for a week...then added five more minutes, then five more...until I walked, and walk, thirty minutes a day five days a week...not a full workout, but as Carman says, my blood pressure dropped, and I felt better! My husband says he misses the exercising if we travel or he isn't feeling well one becomes a welcomed habit!

Tell him, baby steps, baby steps...tell him if *I* can do it, HE can! And he needs feel better for as long as he Al has said before, keeping a positive attitude is a HUGE part of the battle with PD...

As for you, when you lose patience, walk away...find something YOU like to do...I had an eye opening, albeit sad, awakening this week...I have been at four different doctors in as many weeks, and had a colonoscopy on Monday...normally, my husband would take this in his stride, but he stressed out, tremors ramped up, and then he became irritable and sullen...NOT like him...he started coming out of this Tuesday afternoon, but we both know it was a build up of his stress...What did I do? I didn't get sucked into his terrible mood swing, so it this morning...he apologized for the last 48 was just PD...

Take care of cannot change him, only he can change himself...but, he CAN do it...Hugs, and keep posting...Carman is a great person with a great deal of empathy...and is going through difficult times with PD, yet she wants to help...We all do...Hugs, Jane

By Dazedandconfuse On 2014.07.16 19:20
You all are so amazing. Thank you so much for your support, encouragement and advice. I can lead him to water but I can't make him I guess I'll continue to encourage him to make suggestions before I tough love him. Some days are kinder than others I suppose.

By moonswife On 2014.07.16 20:57
I read your post and send you a hug. I have similar challenges. I am 18" shorter than my hubby, and he weighs 270. Or he did two weeks ago. Last week he FORGOT TO DRINK EXTRA WATER in the heat and ended up in hospital with multiple urinary problems. Kidney stone, UTI and infected gland. And yes it is tough to get him to do what he needs to do. And yes, I am 67 too and it is impossible to lift him when he falls (collapses). But we do the best we can, fight the good fight and NEVER GIVE IN. It was his birthday yesterday. The cath was pulled, and came home to find his excellent programmer for his DBS has retired. BAH. One good, one bad. One for the books. Keep up your chin, we are all thinking about your plight.

By JulieB On 2014.07.17 12:47
Welcome to you, Dazed. I'm sending you a hug too, and wanted you to know I'm thinking of you and your very real and exhausting challenges. xoxo

By Dazedandconfuse On 2014.07.22 09:35
I keep reading all the boards and you all are so understanding and patient. I admire your attitudes. So can you help me get past my lousy one? I went back to work full time so when my PWP says he doesn't have time to exercise/stretch (anything!) I call him on it. He has as much time as I do but he won't make it a priority. And when I stress (again) the importance of moving with Parkinsons, tell him about a yoga guy that works out of his house, talk about joining a gym to swim.......instead of saying "I know or I'll try" he says "I'm glad to know how you feel" I find it hard to be empathetic and the resentment is growing with his increased need for my help when I don't feel like he's helping himself. If it is the disease I will wash this man's feet tenderly every morning. If it's because he won't do anything about his weight and can't see his feet.....I don't have a lot of empathy there. I really am a nice person. I just don't understand.... :(

By umajane On 2014.07.22 12:16
Sometimes I do not know if it is the disease, stubbornness or extreme laziness.
It is definitely a combination. Just because I am a motivated type A person does not mean that my PWP is.
Frustrating yes...I can scream or go crazy but that only makes it worse.
So I have made appointments for him to do Pilates and personal training BUT he would rather sit in his favorite chair and relax. However he does like his sessions and the ladies that work with him.
Now granted he has always been a relaxed type of guy. I can only grin and bear it, he is 74 and will not change so I have to change my attitude. I am lucky not to have this horrible disease.

By jcoff012 On 2014.07.22 12:45
Dazed, do not be fooled...we ALL lose patience and we ALL get discouraged...It's just that some of us have learned that in life, there are many things over which we have no control, so we pick our battles.

My "take" on the role of a caregiver is that we need to make life bearable for our PWP, at least for as long as possible. We are not supposed to dictate HOW they choose to live the rest of their life, because if we reverse roles, WE wouldn't like someone telling US what we need to be least, I wouldn't...

My problem may be husband is 66 and was dx five years ago...he does TOO much, if you ask me...Example...because he was having trouble eating and swallowing, he decided he needed braces, so last year, we plunked down $6000 and he has been going through painful braces...and it is painful! Also, he still keeps creating complicated wooden carvings, making furniture, etc., all the while in deep pain from bending over so much. I can go on, but you get the idea...I have asked for advice and received it here, but the bottom line is that I cannot change him and don't really try. It can be VERY frustrating on many levels...but, again, stop, think, and you know what...I think you need to find a way to release some of your anger and frustration, for YOUR sake. Life is hard enough without making it harder through worry or anger. Get an independent hobby...YOU go for a walk...or to a gym...whatever removes you from this frustration...take care of you...Hugs, Jane

By LOHENGR1N On 2014.07.22 13:45
Dazed, We Patients know what is happening to us esp. earlier on in the disease. Myself if I went to the doctor and he told me to lose weight I'd ask him how about you cure my P.D. first. But that's just Me I'm not a good patient that way. As I've said we have to exercise but sometimes not in the traditional ways. Getting up and going outside is exercise, walking to the kitchen is also. Think moving not gym. Writing this I'm reminded of Rocky (My mind doesn't run on the regular pathways at times lol). I think it's rocky 4? The one where he fights the Russian Boxer. The Russian in the gym surrounded by the most modern gadgets and Rocky out splitting wood running in the deep snow, pulling sleds. We all know the outcome of that fight. Well We Patients and Your Husband are in a fight we're going to lose. No doubt about the outcome here. However We strive to fight as long as We can. You and I can't look at it like we are not stricken with this disease. Doctors can they will say lose weight, quit smoking, don't drink water at bed time. Force yourself to stay awake during the day and you'll sleep better at night! All the same litany they recite patient after patient, day after day. They can't cure us and neither will you. The best we can hope for is to stay around and live the best quality of life we can while we are here. Stress is a big upsetting factor to our health. We need to reduce it and constantly being told to exercise or do something can be stressful for both caregiver and patient. One cannot look at it from only one side, say Doctor and Caregiver, lose weight you'll feel better (did I mention I'm a bit of a smart ass at times?) My reply I'm gonna need padding for later on when I start falling all over it will cushion my landings. (bet I have some of you saying boy oh boy I'm glad I'm not dealing with him all the time). We have a different view point looking at these things from having a terminal disease, we can't help it, it will do that to you. As this disease progresses we will lose weight while not trying to then we will hear eat, eat you're too skinny. Try to relax and not pester things kind of have a way of working out as we travel this path of Parkinson's, it is a long journey take it slow and enjoy the good days, don't make them bad or stressful with worrying about what you or someone else thinks we should do encourage us to do what we can and don't pester about what you think we should. We're basicly honest and do what we feel we can at the moment. (Some mis-use disease for an excuse but for the most part We don't) Take care, best of luck and hang in there

By VioletV On 2014.07.22 15:46
I'm reading this at a moment when I am cranky and put off myself. I have a TON of work to do for my professional life (so why am I on the site) and am very irritated that my lovely PWP husband is feeling sorry for himself that his favorite caregiver has moved out of state. He needs a lot of tending and my (more or less) boss is freaking out because I'm doing so little and I have to prepare two Powerpoints for the end of the month and ... and ... and...

Living with a PWP is just tough.

The thing I can say to you is that since you know you will not be able to lift, transfer him past a certain point, you set that limit and let him know -- lovingly and at a time when you aren't p*ssed off: as in :"Darling, the reason I am concerned is that at your current weight it will be quite soon that I won't be able to lift you without hurting myself. What do you think will be the best strategy when that day comes?"

Sounds harsh, but I think that you can't injure yourself doing what you just can't do -- ultimately he'll have less of your help if you do. I think of PD as being either a partnership disease, when the two of us are working togehter to solve it, face it, or HIS disease if he is shutting me out from thinking about, planning for, responding to it. Right now my PWP doesn't shut me out much, but when that happens, I have to just stand aside and let the consequences happen. Assuming he is cognitively still himself, these are the decisions of a grown man.

Somebody please tell me if I'm being too awful here? Can you tell I'm not in a lovely state of mind?

Girlfriend--believe me, we understand.


By mylove On 2014.07.23 08:54
Violet - it IS a partnership disease. I had such an epiphany reading that. We have been going through his depression recently, and it stinks. (To be fair, let me note that we went through MY six month spell last year when we uprooted from home, and it stunk just as bad.)

My second comment is that sometimes I am very gratified to get validation that we ALL - no exceptions, not for PWP nor partners - secretly roil with anger inside at this thing that consumes our lives, keeps us from living as the people we may have been, going places and doing things that we want to, being the couple we want to be. We may be smiling on the top but it's there, and no amount of denial or distraction makes it go away. I'm learning that to turn and face that beast and confront it head on helps. We can work with honest emotions. We are still a partnership, and we face this together.

You're not being long as Ben is cognizant of his own actions we relate like equal partners, as you said. I think there still has to be accountability. You can't deny that PD causes cognitive changes and then still make excuses for everything by saying "it's just the disease." It's either/or. Either they can't help themselves, in which case we do whatever we can in our power to make things better, or they can, and as a spouse it's our job to provide accountability. I have had this discussion with my counselor many times, because I want so badly to fix it all, and she reminds me that he's still a grown man with free will, and that I take away from him our balance as a couple when I blame everything on the disease. It's a dangerous trap...once you start blaming everything on the disease, there are no parameters left - they feel marginalized, we feel martyred and frustrated, and we turn the relationship from spousal to parent-child. Remember to keep the person first and the disease second.

Also - PD isn't a magic totem against getting another disease or condition. It's still implicit upon us to do the things we need to do to keep healthy bodies outside of PD - keep our weight in check, stay mentally fit, manage our other diseases. You can't let PD become the golden ticket against taking care of everything else. People with PD die of other things too, heart disease, diabetes, etc.

Maybe I'm rambling...if so, forgive me. Just...thanks for acknowledging that we are normal and that no ones perfect.

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