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Topic Weight Gain Go to previous topic Go to next topic Go to higher level

By smith2628 On 2009.12.15 20:06
Hi everyone, my dad went from a 34 to 40 pant size from his diagnosis in September to now. He is eating so much! Part of me is happy he has an appetite (good sign right?) , but now it seems compulsive. Im afraid he will get too heavy for us to help him when he really needs it. I read that dopamine antagonists cause compulsions but he is not on any. Only Levodopca Carbidopa. Anyone have this issue with your loved one before? Thanks!!

By karolinakitty On 2009.12.15 20:42
I know, like you said, there are compulsive behaviors with dopamine agonists, but isn't the Levaodpa and cardidopa basically the same? Mine's only on requip and we have the opposite problem where he had rapid weight loss, started at 48 is now38, but it has slowed since the last dosage upgrade. We have another upgrade coming up next week, hope he doesn't lose any more. He's more into sweets than food itself but i don't care at his point, i don't want him to lose much more.

Sorry i can't help you with this one........

By susger8 On 2009.12.16 07:39
Levodopa/carbidopa is not exactly the same as dopamine agonists (Requip and Mirapex). DA agonists have a much greater tendency to cause compulsive behaviors, but I've heard people say that levo/carbi can do this also. Gambling, shopping and porn are typical obsessions, but I guess eating could fall into that classification. I think you might want to talk to his doctor and discuss whether the weight gain is a problem (both to his health and to your ability to assist him), and whether any changes to the medications should be made.

By Mary On 2009.12.17 10:41
My Dad had a very good appetite, snacked all day long and still ate good at mealtime for the first eight months in my care and then his appetite slowly decreased to nothing, food no longer taste good to him, not even his beloved chocolate and red wine. I would enjoy the appetite while you can. I enjoyed watching Dad eat! It was his one pleasure in life at that time.

I miss my Dad so much. My heart breaks knowing what is ahead for all of you. It is often posted that no two are alike suffering from this disease but in my experience, the stages are very similar for everyone as I read the posts. The questions and concerns are also similar. This makes me wonder why doctors do not prepare us better. If I can see the progression through what is shared in the posts compared to my experience with Dad, why can't doctors see in all of their medical wisdom and experience? Dad's doctors would not allow hospice, saying he could be in his state for quite some time. Well, he passed away 2 1/2 months after I requested hospice. If you are caring for someone who no longer has an appetite, insists on getting up when they know they'll fall, loses interest or ability to enjoy things they once did, etc., get hospice involved, the end will be near. I was encouraged on this site to get hospice involved and chose to follow the doctors' orders, I regret that so very much. I am sure if I had gotten hospice involved when I felt it necessary, Dad would never have had to move to the Veterans Home, and I have such guilt over not caring for him until the end as were his wishes. So, I am hoping you can learn from my mistake so to speak.

Hugs and blessings, Mary

By susger8 On 2009.12.17 20:51
Oh, Mary, please try not to feel guilty. None of us can forsee the future -- we all have times when we kick ourselves for what we think we should have done, but we all do our best. You cared for your Dad with the kindness and generosity of your heart and soul. Many, many people would not have given the care that you did. Please be at peace.

By annwood On 2009.12.17 22:26
Yes, Mary, I agree that you did so much for your Dad. The fact that you are feeling this way just further indicates how much you cared. None of us are "perfect" caregivers - we give what we can and we love. I hope that when my time comes I will have someone that does that for me. Remember that the Holidays, especially the first one, are particularily rough when you have lost a loved one. Try to remember the good times with your Dad. Know that he is in a better place and that he knows how much you care.

By WitsEnd On 2009.12.18 09:15
Mary,

Do you really think that the disease progression would have been any different with hospice at home than at a VA Hospital? You never had control over the disease progression. It is an incurable, progressive, terminal disease with symptoms that can be improved in the earlier stages...but without a real cure....at some point even the symptoms can't be warded off.

My Dad did eat lots and lots of stuff until he stopped eating at the end. He was always asking for food. We decided he couldn't remember he had eaten so he just kept munching--mainly on sweets.

Even when he was eating though, at one point his body stopped processing the nutrients and the weight loss started and it was dramatic over the last year. Hospice told me it was the body's way of saying, "I'm tired and I'm ready to let go" and that even feeding him more or different foods would not stop this. This was very similar to what happened to my mom after her stroke. It was so sad and painful

One of my co-workers' father-in-law just passed away. He had Parkinsons and either had a brain bleed from a stroke and fell--or he fell and that caused the brain bleed. Either way he went into a coma and they took him off life support. I shared with her how my dad had suffered with the end stages. It was of some comfort.

You can't help but asking why your loved one had to suffer so when others didn't. My mom used to always say God will take you when it's time. Now that doesn't mean you should go stand on railroad tracks in front of a train and say "God, I know it ain't my time". There's things you can do to hasten things along because God gave you free will. But you aren't a miracle worker and you can't stop someone from dying from a terminal illness. You did the best you could with what you had to work with--and so please don't be so hard on yourself. Do you think your dad who loved you would want you beating yourself up? That's just further victimizing someone who was a victim of this horrible disease. Forgive yourself. Your dad and that disease didn't come with an operating manual. You had to learn as you went and do the best you can. That's what you did...and that's all anybody would ever expect. Channel your guilt and anger onto the disease--not yourself. I'll bet that's what your dad would want for you.

Hang in there. I know the holidays will be difficult.

By Emma On 2009.12.18 09:31
Mary, you were a wonderful, caring, compassionate daughter. Everyone should be lucky enough to have someone like you to care for them. You did not make a mistake, you made a decision. It's easy to second guess ourselves after the fact, but your decision was based on what was best for your dad. Go forward with good memories knowing that you loved your dad and took care of him when he needed you. I'm sure that he is smiling down on you and knows how much you did for him.

By Mary On 2009.12.18 10:14
Thank you all so very much for your continued support. My head agrees with you but my heart breaks.

By Trish Sanchez On 2009.12.28 22:56
Thanks to all for your posts. I need some help and can't get any answers from Kaiser.

My Mom is on a steady decline. She is now suffering short term memory loss. Can't remember is she took her meds, what day it is, weather or not i am working or will be over, etc, etc.....

She has fallen twice in two weeks, is sick at her stomach, has constipation or the opposite. Is angry and hurtful or emotional and loving... Sleeps 20 hours a day and is so weak it is a major thngs to make it to the bathroom and back to her bed.

I have called Kaiser several times to receive the same answer take her to emergency. I don't want to take her there, they don't understand Parkinson's. The last time she went they hospitalized her and after 2 days of tests, they informed me she had asthma, when I know she had an aspiration after choking on her food.

Wow, I sound so angry when I read what I have written. Sad but true....

Please any suggestions would be appreciated. Should I get hospice involved? Is this to soon for a decision like this?

By annwood On 2009.12.28 23:55
Unfortunately much of what you describe is to be expected in the later stages of this disease. Tell us what you mean by rapid decline - has it been coming on for months, weeks or days? When does she see the neurologist again - if not soon, perhaps you should move up the appintment.

Sorry that you are going through this. When patients get to this point the docs sometimes seem to avoid dealing with them. It isn't right but it happens. I agree with the ER thing, especially this time of year.

In my area you can contact Hospice and they will do an initial intake. If they feel the pt is eligible, they will take care of contacting the physician for the referral. I always encourage caregivers to get Hospice involved - it doesn't mean death is emminent but rather the disease is progressive and not curable.

Good luck and keep us posted.

By Mary On 2009.12.29 10:08
Trish, I would absolutely contact hospice. I also believe you are describing the end stages of this awful disease. When my Dad was going through this, I thought his decline was quick but looking back now I realize he was much worse than I thought all along. Also, during the end stages it was so difficult to bring Dad in for doctor appointments and exhausting for him. The doctors just looked at me and asked what do you want me to do for him? YIKES! So, again, please contact hospice. They are a wonderful source. Hugs and blessings to you, Mary

By lynn On 2009.12.29 17:42
I'm so thankful to have people like you to discuss these issues. I'm struggling with whether to call in hospice. My husband is in assisted living now for 3 months, has no idea where he is, had surgery due to multiple falls, always tries to get up only to fall again, erratic sleep at night, very bad swallowing. Some days he doesn't look so bad to me. This is the trick to PD especially for the caregiver who sees them everyday. I think some times it may be my denial. Anyway, the experienced caregivers here seem to be in agreement on one thing, get hospice. I would also like some guidance. I don't know whether I should treat my husband if he gets sick. I've recently turned down the feeding tube but I don't know what to do for other treatment.

By Trish Sanchez On 2009.12.29 21:52
AnnWood Mary & Lynn

Thank you all for responding. I will contact Hospice tomorrow. I am working 3 1/2 hours from home Fresno CA to Roseville CA today and tomorrow. To be honest it has been a nice break. Mom's m-f caregiver called me today (after leaving Mom's) to tell me Mom fell again last night. Hit her face on something and has scrapes and a black eye. Mom didn't want her caregiver to tell me. YIKES.... yes there are many confirmations this week that I need to do more

I heard about the Parkinson's diagnosis in 2001, so I would say she has suffered with this for at least 8 years.

By steady decline, I mean she has now fallen 3 times (that I am aware of) in 3 weeks. Forgets to take her med's or takes too much med. Is so weak she has difficulty making it to the bathroom and back to her bed. She sleeps or is in bed at a minimum of 20 hours a day. She is not sure what day it is. She asked both Saturday and Sunday why I am not working? (I don't work on the weekend) The dementia is new, and has come about in the past 4-5 weeks.

After much groveling she has an appt with her neurologist on Monday Jan 4th. (Much better than the original appt January 14th.

Thank you all, just being able to write and be heard by understanding people is helping so much.....

By LOHENGR1N On 2009.12.30 00:26
Trish, Hospice should be checked out by all means. You mentioned Dementia? Saying it has come about in the last 4 or 5 weeks? Is this a diagnosis from a Doctor? While there is about a 50/50 chance of developing dementia with Parkinson's it isn't for a non professional to diagnose. Confusion can result from not taking the correct doses of medication either too little or too much both of which you have stated happens.

At times We can with all the well meaning in the world pass out information. Meaning no harm at all trying to help others be prepared for things that may come. Human nature then watches looking subconsciously for signs of these things. Sometimes perceiving what we interpret as signals of such we tend to jump to conclusions fearing the worst. Many times these conclusions are right sometimes they are not. We must remember when presenting a problem to the Doctors to include all information such as sporadic under/over medication along with recall problems so the Doctors can weigh all considerations when making a diagnosis. Here is where I seem to get myself into trouble.....Yes as my main caregiver I want to know all I can. Conversely as a Patient I wouldn't want my caregiver scrutinizing my every move casting worried looks, sighing softly/sadly when they perceive a problem or see me having trouble doing something. It's a no win situation. We do the best we can with what we have. I try to always remind myself caregiving is basically trying to ease the burden. Making life easier for the patient, caregiver and all involved. (That's what this forum does) As I see it if a facet of Parkinson's is coming then it is, I can't stop it. I'll have to deal with it when it comes. Time spent looking for it or watching for it is time taken from trying to make life livable now. It's time stolen from easing the present burden and increasing the burden of worry about future times. I don't believe this is a form of denial or looking through rose colored glasses. Frankly, I don't know any other way to live my life with this disease. I guess if other posts are a kind of Christmas blues then this is a form of New Years introspection.

I hope no offence is taken from my comments as it isn't my intention. Just some latenight musing from a diseased mind (wink). We're all in this together, take care, best of luck and hang in there.

By Mary On 2009.12.30 10:20
Al, you must be blessed with terrific doctors. The doctors I encountered while caring for Dad knew less than I did about the disease - it seemed. I found this forum to be a much better source than Dad's doctors. However, as always, I do appreciate and respect your perspective on things. Hugs and blessings, Mary

By lbellomy On 2009.12.30 10:35
Trish, also have her checked for any infection such as urinary tract infection, since your mom may feel discomfort but may not be able to specifically say where. Even the constipation could affect her ability to focus. Also if she is erratic about taking her meds, it may be time for someone else to manage them.
Lorraine


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