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Topic Am I physically ill - Or am I depressed? Go to previous topic Go to next topic Go to higher level

By hapidawg On 2010.05.30 22:36
My husband was diagnosed 7 years ago with Parkinson's Plus. He is 78 years old. He was hospitalized with pneumonia last month - round 1. He did survive - just. Although recovered from the pneumonia (is still having physical therapy) he feels pretty awful all the time. He needs a walker or wheelchair to get around without falling. It's a major undertaking to get in bed and pull up covers. Since he has to get up at least three times a night to go to the bathroom, he spends a lot of time getting in and out of bed and getting the covers just right. I try to help. This means I, too, am awakened several times during the night and don't fall back to sleep easily. I feel pretty rotten too. I don't know if it's depression or if I am also ill. I won't go to the doc because of no insurance. Here it is - I don't feel like doing anything - listless - tired. I am trapped by circumstances. I loved gardening, reading, outdoor activities, cooking, people - so did my husband. It's all over. I am 64. I feel ancient. My body/mind is so tired. In six months I will be eligible for Medicare. I have been counting the years and then months to this.

Does anyone else feel this way. Is this the kind of depression one gets when taking care of a Parkinson's spouse? He has been very courageous but it is a heavy burden to watch him suffer. I can only imagine what he feels.

By Emma On 2010.05.31 06:18
hapidawg, you are not alone. I think that many of us feel physically, mentally and emotionally spent. Personally I can so relate to you, my husband has the same issues with mobility and getting in and out of bed. Loss of sleep can certainly take a toll. So can grieving for the life we have had to give up to care for our loved one. Just as the person with PD wouldn't choose to have that disease, we wouldn't choose to be caregivers but here we all are and we do the best we can, patient and caregiver alike. It can be overwhelming and it is very normal and common to get depressed. Just last month I finally went to my doctor and got a prescription for anti-depressants because like you I felt ancient and so sad. I worry that the stress of this will kill me and I won't get to see my only grandchild grow up. I can't tell you how much the pills have helped. Please try to find a way to see a doctor for yourself. Is there a low cost clinic where you live? Public Health? Call your local Council on Aging and see if the can refer you. Please, know that I care and I empathize with you. Hugs, Emma

By hapidawg On 2010.05.31 10:24
Emma - thanks for your support. What is the antidepressant you are taking? I did get a prescription filled but the contraindications scared me big time. I was okay until the neuro-something cancer it could cause. I have a sensitivity to certain foods and chemicals. Can't take so many things that I'm very cautious taking meds. Liver issues here - Hereditary Hemochromatosis.

By Emma On 2010.05.31 14:16
Strange coincidence, there is hemochromatosis in my family too. My sister has it and I'm a carrier. Is your family northern European? We're Dutch.

Anyway, I'm taking Celexa, 20mg a day. It's been such a help to me, but I am basically healthy and I rarely have side effects or complications from medications. I've actually been surprised by how much it helps. I don't feel any different in general, but I'm not crying all the time and I seem to be able to cope with stress a little better because I don't feel overwhelmed by everything every minute of the day. It's just taken the edge off. That said, I understand your reluctance, I'm usually very cautious about medications and try not to take them if there is an alternative. That's why I put off seeing the doctor for an anti-depressant. In your case I think you need to be cautious and do some research considering your existing health issues. If you find that medication isn't a good option for you please explore other solutions; yoga, time off, herbal remedies, whatever might work for you. Living in the "black hole" is not healthy. We deserve to have some joy and freedom from stress in our lives. Let me know what you decide to do. I will keep you in my thoughts and in my heart.

By mrsmop On 2010.05.31 15:12
hapidawg...You are definitely not alone. I don't write about it a lot because I know no one can change my circumstances. I am on an antidepressant (cymbalta), and I really don't know how much it helps. I'm married, but really don't feel like I have a husband any more. I'm envious of my acquaintances who can plan travel and vacations. I'm envious of couples who are always doing things and going places together. I worked all of my life and just couldn't wait until I could enjoy the leisure and easy life of retirement. By the way I just turned 67; he's had PD for about 11 yrs. In the last 18 months he's had DBS, a knee replacement, totaled his car, got acute pneumonia, and then broke his neck. Had a neck fusion, then got pneumonia, bacteremia, and c-difficile. He's a fighter and is surprising us all that he is finally making progress. He's now rehabbing in a SNF and might be ready for discharge soon. Then what? Have been working on estate planning with an elder-care attorney, but there are no simple solutions to secure my future. Of course I'm depressed. Sometimes I just want to stay in bed. I try to engage in activities at our wonderful senior center, but the nights and weekends are very lonely. And of course I continually ponder the next step for my husband...home with helpers or assisted living? Have not yet decided, so just thinking about the options drain my energy. Maybe just writing about it helps? Neighbors are kind but then go on with their own lives. The reality is that his Parkinson's is not going to go away.

By lurkingforacure On 2010.05.31 17:01
Whatever stage our loved one is with PD, it's stressful. And depressing. Stress and depression both disrupt sleep, which means your body does not get the time it needs to rebuild and renew, which means that if you keep will get rundown and physically sick. It is a vicious cycle and one only the caregiver can break. Our loved ones either don't see it, or are powerless to do anything to help us....they need us to help them!

Whatever helps you, you should avail yourself of it. Yoga, anti-depressants, herbs, I would explore what helps me the most and then try to incorporate it into my day.

With regard to the meds, I have heard that most pharmaceutical companies have programs that offer free meds to folk to qualify...I think things have to be pretty dire but you could try. Another thing we discovered is that most docs have copious amounts of samples in their offices...once our neuro gave us what I calculated to be several hundred dollars' worth of a very expensive drug, I was shocked (I found out later none of his other patients were taking it and the expiration date was looming, but still, it was very generous and unexpected). I'd try whatever programs might be in your area, remember any doc can write a script.

One other thought is this: we consult with an out of state doctor who charges us seven dollars a minute, no minimum minutes required. We have had bills for $21.00! He is excellent and very accurate with his billing. We found him because our neuro would not script something alternative we wanted to try and this guy has lots of patients taking it (it's low dose naltrexone, you can google it if you're interested). We had to fax him our medical history before the first consultation so he could review everything beforehand but other than that, it's just like a regular visit with your doctor. His name is Dr. Sullivan and he's in Pennsylvania if you are interested. At first I was concerned the lack of physical presence might be an issue but he asks more questions than our other docs we physically see and he never rushes us out the door!

By hapidawg On 2010.05.31 22:07
Emma: first - hemochromatosis . . . 1 in 80 people of celtic descent have it. I am pure celtic - both sides - had genetic testing and have the most common gene from each parent. Lucky me. 1 in 200 of the rest of the population (highest incidence in Northern Europeans) has it but it is rarely tested for although it's an inexpensive test - Ferritin. When I was first diagnosed, my liver and iron readings were way out of line. Now they are pretty much okay. I donate every 6-8 weeks (to get the iron out) and my iron is really low. Maybe that's part of why I'm so exhausted.

Mrsmop: I thought I had problems. What you have been through is unbelievable. Does your husband still drive? Our Neurologist told us that my husband shouldn't drive about a year ago. Said that with PD it was like driving drunk. I know what you mean about your friends and family taking trips/vacations -- doing great stuff -- and you are literally stuck. We were always going/doing/building/dining out - now, nothing is enjoyable - especially when you watch your spouse who is just barely getting through the event.

Lurkingforacure: I would most definitely like more information on Dr. Sullivan. I am way to exhausted to do much to help myself. But, maybe, if I have the info at hand, there will be a time when I feel strong enough to do something with it.

Yes. Writing/Venting does help some - for an hour or two. I'm off to bed.

By Heedee On 2010.06.01 16:08

I know exactly how you feel. I have Mom(85) and Dad(88) living with us. Mom has some form of PD. Dad is waiting for an appointment with a neuro. My caregivers and I suspect he has PD. His dad died with it. I am lucky that I have a husband who is supportive and daughters who let me vent. Do you have a problem with guilt? I've discovered that exercise really helps me. Sometimes, when I can't get out, I just walk up and down our street several times. That way I can stay in touch with what is going on. I haven't posted often on this forum, but it has been a wonderful source of education. Hang in there.


By mrsmop On 2010.06.01 16:32
Hapidawg...Re driving, he was driving just before he fell and broke his neck. This was after he fell asleep driving and totaled his car. (He had had a knee replacement and chose to drive 3 weeks later while still on pain medication, so he attributed his motor vehicle accident to those circumstances.). I now have a new Volvo with all kinds of safety features and warning devices sitting in my garage. His future ability to drive is very much in question. His neck was fused at 4 levels and turning it will be very difficult. On top of that is the issue of the Parkinson's and his questionable judgment. Is anyone looking for a new car???


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