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Pathfinder

Quality of life as it pertains to Parkinson's

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Last week my husband saw his Cardiologist concerning a PAC episode caught during a EKG at our PCP office. After ruling out that it was not a cause for concern she lowered his BP med to try and see it was attributing to him sleeping so much. She said at this point she wanted him to have quality of life and hoped it would help.

 

Today we saw the OMT (Osteopathic Manipulative Therapy) doc and when l mentioned the increased hard tremors and C/L increase and the amount of his sleeping he was doing, he brought up the quality of life comment as well. He said to try and get an hour twice a day of awake time, more if he can, and that may be all we can expect. He said this is definitely PD progression.

 

It was very discouraging as you can imagine. I don't get upset in front of hubby, but it was hard not to today! His response to both doctors was as if he didn't hear, he never asks questions after a visit and as far as l can tell is blissfully unaware.

 

Just venting here as this group understands.

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I get SO SO angry when I get that kind of comments too. Oh.. she's old already so this is as good as it gets.  Your mom gets an hour of awake time a day?  Wow that's good cause I have patients that don't even get that.   My own helper says the same thing about my mom.  I wonder how much it would matter if this happened to their loved ones or to them personally?    Here we are trying our best doing research for the latest and most promising  discoveries and or trying to find the best combination of medication and supplements to help and we get this kind of negative comments.   I have wanted to ask these doctors how fulfilling is their job when they offer no hope to anyone.    My sister listens to doctors and whatever they say she accepts so she's not exactly a cheerleader in our corner.   Life sucks.  Evil uncaring people suck.  

 

Oh.. and one more thing.  When a doctor says it's progression of PD it means they don't know so that's the answer to give because who will challenge that?

Edited by miracleseeker
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The doctor's assessment is based in reality. They have seen Parkinson's patients on a daily basis if they are a MDS, often for years. As a caregiver of a loved one, our assessment is one of hope, hope things will get better, hope we can change the inevitable. We may not like it when reality bursts the bubble of hope, but reality wins.

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My mom's then doctor said my mom would be in a wheelchair 7 years ago.  She just started this year so..... Hope for the best and stay positive.  I try to remind myself this everyday.  The doctors may have seen it all but every person is unique and miracles do happen.  What we ask is that these experts make an effort to help us instead of shaking their head and give up.   

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Doctors give their best assessment based on their experience. The progression level is unique to the individual. The doctor knows where things are going to go. He/she just doesn't know how long it will take for each patient to get there or what other health conditions might intervene. I want a doctor for my DH who is positive and uplifting, but I want a realistic preparation of what is likely to happen and not a rosy picture that ignores the inevitable progression of the disease. My DH is no longer able to process what the doctor says, but I need to be prepared for what I have to deal with. When there is no more that can be done according to current medical knowledge for Parkinson's dementia and Parkinson's psychosis and that it will only get worse, I want to know that and I am not offended by that information. It is true that some doctors have a personality, manner, and communication skills that make us feel better about the message.

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My DH also sleeps alot. Goes to bed at 9 or little before. Does not wake or wants to get up until 8 or 8:30. By 10 he usually has what little breakfast he eats done and back to sleep in his chair. During the few waking moments I get him up to do his exercises, walk and bathroom and then back to sleep. Reality is the sleep is a progression of PD. I have read up on all the symptoms directly from this foundation so I do not have my head in the sand and realize there is not anything left to do besides what we are doing, his medication, proper diet and his exercises. Granted it is difficult to see the changes and different symptoms progressing almost on a daily basis. i cherish his ON days, cope with his OFF days, and life goes on.

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My DH doesn't go to bed at night until about 11:00 p.m. He may sleep through the night or he may rouse for a while during the night. He never awakens before 11:00 a.m. Often it is later. After he is cleaned up, dressed and has something to eat, he sleeps in his chair. He is usually awake to some degree for three or four hours, occasionally more, total in a 24 hour period. His PCP thinks it is merciful that he can sleep that much to avoid the confusion of dementia and psychosis. At least he is at peace when he is asleep.

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Thank you all for your responses, l am sad that we are all in these situations with our loved ones. I too am a realist and l want to hear the opinions of all his doctors and don't shy away from things l don't want to hear. It's so lowering to hear them. That's all.

 

My husbands dementia is such that he is sheltered from the cause and effect of his condition and l am grateful for that. He does get scared when those hard tremors appear. He gets frustrated at all the doctor appointments, therapy, and all the regimented Meds he takes. He is still his sweet self except for not wanting to take a shower!

 

I will continue to do the best l can by him, as he has always done for me.

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My mom is like my baby now.  She gets frightened if I get close to her too fast or if I try to pick up her arm to sit better on the sofa, etc.  I know she's scared and does not know what is happening.

She sleeps all day long and with that the brain is not active so I don't have expectations of her suddenly having a conversation with me but I still try my best to get her interested in walking with me and letting her eat good healthy food. 

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We're on that slope also.  Still mobile, still going out, still independent, still interacting, but pieces are falling off.  PCP had DH walk the hall this week, and then sat him down to have a long talk about stairs and falls.  And then a pep talk about quality of life.  Sigh.  His PCP is great, really likes DH, has known him for decades, so it is sad to watch doors swinging closed.   Thank heavens I got the front stairs replaced last year with new steps and railings.  Time to work harder on decluttering the house.  More pieces of my life to shed.

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EXPERIENCING GOD'S PEACE


experiencinggodspeace.jpg


You’ve been there - it seems like everything around you is falling apart, everything you worked so hard to build is collapsing and everything you thought was solid is now up in the air. Then, you bow your head, lean into God and suddenly, you’re filled with an overwhelming peace - an amazing feeling of contentment, love, pure joy and unimaginable relief


His peace is truly an experience that “surpasses all understanding” (Philippians 4:7). Yet, it is real! We learn about God’s peace in John 14:37 (ESV) when Jesus says, “Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.” And, we also learn about this divine intervention in John 16:33 (NIV), when He says I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”


So it only makes sense that when we see a friend suffering from the loss of a loved one, or hold the weary hand of a family member battling a serious illness or witness a friend struggling to get through their day-to-day life, we pray for God to give them His peace - to relieve all the pain and pressures and to fill their hearts with His loving presence.


Know someone who is struggling to find relief? Send them an inspirational eCard and let them know that you are praying for God to fill them with His peace during this difficult time. It may be just the words they need to hear to lead them to the loving, peaceful arms of Jesus.


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Thank you all for your responses, l am sad that we are all in these situations with our loved ones. I too am a realist and l want to hear the opinions of all his doctors and don't shy away from things l don't want to hear. It's so lowering to hear them. That's all.

 

My husbands dementia is such that he is sheltered from the cause and effect of his condition and l am grateful for that. He does get scared when those hard tremors appear. He gets frustrated at all the doctor appointments, therapy, and all the regimented Meds he takes. He is still his sweet self except for not wanting to take a shower!

 

I will continue to do the best l can by him, as he has always done for me.

Hi Pathfinder,

After I take a hot shower my PD is greatly improved.Its so good that I cant tell if I hadn't taken my meds.Hope your husband has similar experiences.

I also have been taking comtan with my sineemt.Ive cut back to just 3 25/100 and a 50/200 at night along with comtan 3x with meds.

It's been a great help and luckly Ive found the best regium.

john

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Hi Pathfinder,

After I take a hot shower my PD is greatly improved.Its so good that I cant tell if I hadn't taken my meds.Hope your husband has similar experiences.

I also have been taking comtan with my sineemt.Ive cut back to just 3 25/100 and a 50/200 at night along with comtan 3x with meds.

It's been a great help and luckly Ive found the best regium.

john

Thank you John for you experiences. I am not familiar with Comtan. I bought a small space heater and have the bathroom super warm and cozy before he showers, he still tremors so bad l have to dry him and help him dress. I can't tell if the tremors are a hard chill or just his body's response. Showers really tire him out.

 

The med change has been beneficial, the Nuero's office recommended if he is still sleeping so much to see our PCP again. I just wish l could figure out his symptoms quicker. So much to get used to!

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I take my mom straight to bed after her shower.  The water and the scrubbing I do makes her very relaxed so I think it's normal if your DH is wiped out afterwards.   My mom is very sensitive to temperature change.  Too cold and yes she shivers a lot and too hot she drips in sweat.  I also put a small heater in the bathroom to keep my mom warm.   Great minds think alike. :-P

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I take my mom straight to bed after her shower.  The water and the scrubbing I do makes her very relaxed so I think it's normal if your DH is wiped out afterwards.   My mom is very sensitive to temperature change.  Too cold and yes she shivers a lot and too hot she drips in sweat.  I also put a small heater in the bathroom to keep my mom warm.   Great minds think alike. :-P

Great minds indeed!! He rests so well after the shower too! The little things in life really get taken for granted don't they? We are blessed to be able to care for them.

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