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Topic Overwhelmed by so many health issues Go to previous topic Go to next topic Go to higher level

By kkoschemann On 2014.12.11 13:01
Been a real tough week with my 85-year old PWP. In addition to Parkinsons, she has macular degeneration (legally blind), a pacemaker, edema, and frankly just the aches and pains of being 85, including some dementia. Issues seem to come up monthly now...my husband and I always think - is this related to Parkinsons, or her heart problem, or is this dementia? Here primary care doc is great, but so many are involved in her care now.

Example from this week: PWP is in assisted living and very happy. Apparently she's had leg pain over the last week and finally on Sunday she couldn't stand to be touched or moved. That was the first we heard of it....because she thought she could just throw some bengay on it. Primary care strongly suspected blood clot because of heart issues, severe swelling, and location of tenderness. ER determined it was cellulitis cause by a fungal infection in her big toe. And of course the infection and related antibiotics cause loose bowels and episodes of delusion. She is "neglected, tortured, having narcotics stolen from her, she is a secret agent working for the DEA, etc.

So we have that under control, a visit to the podiatrist next week. Now she is complaining of neck pain and blames use of her walker for poor posture and her dowager hump (is that just Parkinsons, old age, or something new?)

She wants to wear sunglasses all of the time, or sits with her eyes closed because light hurts her and with eyes open she gets dizzy. (macular degeneration, parkinsons, or just old age?)

The incontinence has gotten so much worse. We just can't get a handle on it and she's ruining her carpets, furniture, and clothing. #1 can be handled by the pads she insists on wearing, but they don't work for #2. Again Parkinsons (or related medicine) or old age.

Nobody seems to have answers and I'm getting overwhelmed. Feel like we have so many docs involved. It's just happening more frequently.

I'm worried we are about (or have) mad that transition from stage 3 to 4 and nursing home may soon be answer rather than assisted living. Dreading that for her.

I know this will work itself out, just needed to vent.

By jcoff012 On 2014.12.11 17:26
I am so sorry for all you are enduring now. Health issues seem to come in waves, don't they? I just posted to another topic about all of health issues we are facing now, too. You see, eight years ago, I was diagnosed and treated for uterine cancer and severe anemia...been cancer free for seven years (yea), but it left me with left leg lymphedema and this morning I fell really hard on my side and bruised my arm, leg, shoulder and ankle...not good, as it only makes the lymphedema worse...suck is life...Like PD, it is chronic, so I just have to live with it.

At the same time, we are dealing with my Mom, 95, who has been in the hospital twice in a week for two heart surgeries and is now facing a week in rehab to see if she is allowed to return to the independent side of her retirement community...daily calls, tears that she is in pain, and the anguish that we simply cannot afford to go back again (we just got back a week ago, after flying from CA to OH). So, little or no sleep for quite some time.

Add to this, my husband's PD journey, and he is slipping, too...he said so last night...and he has the annoying thought that we need to take everyone from CA to FL to DisneyWorld...all NINE of us for a week! We have had several heated "discussions" about it...imagine nine airfares, four hotel rooms, food, two car rentals...and entrances to the park for seven days...He is worried he won't be able to go if we don[t do it soon...BUT, that was his excuse in the Fall when we did the same for Disneyland...this time I am saying no...got a spare $30-40K???

I am telling you all of this to show you that you truly are not alone in all of this. Funny, but the PD seems to be the easiest thing I have to handle...except for his insane desire to spend all of our savings!

So many of the things you are facing are issues my Mom is facing right now...she doesn't have PD, but being elderly seems to be the culprit...She sadly told me they put her in a diaper today...I had to assure her that that was ok, although I could hear the pain in her voice...

My simple advice is to take each issue as it arises, get a lot of rest, and come back here to vent...it helps. You are not judged here...everyone understands...they truly do...and we give you kudos for realizing you need to vent to remain healthy yourself.

Hugs, and welcome...Jane

By Ibepar2 On 2014.12.11 20:35
Ian sorry to hear of your distress. I can relate to everything one of you issues. My husband is 85 and has PKD. He is still at home with me as his caregiver.

I just left to take our dog out for his business when I returned he had locked me out in rain and wind. Looks like tonight will be one of those.

Back to my reply to you. I do have a question about you decision to put her into assisted living?

By LOHENGR1N On 2014.12.11 23:59
kkoschemann, Hi and welcome to the forum. You've found a great place with many people willing to help in the journey with Parkinson's. You're right as time goes on it seems more and more doctors get involved in treatment. You're also right in that they don't know or tell if things are P.D. related or not. To many seeing someone or treating a problem with a person with Parkinson's is new to them or fairly new and they aren't familiar with the effects of P.D or our medication. I can't tell you if Her problem with neck pain is strictly from P.D. or not but P.D. does shape Us into a rounded shoulder stooped posture. So if She's complaining that using the walker more is causing her pain her complaint seems to be kind of spot on (and good for her that she's noticed it and is putting two and two together). Also Parkinson's Disease does effect our eyes not only with causing our eyes to tremor but it also can cause problem with our pupils causing them to have trouble expanding and contracting, so that might also be P.D. related Her wearing sunglasses because of the light hurting her eyes. If Her pupils are not contracting correctly then unlike a "normal" person's eyes then too much light is getting into her eyes and that will cause problems and hurt. More kudos to Her for taking steps to help rectify the problem on her own. I know you're venting and worried about her delusions from the infection, which can be very scary and alarming, maybe there is some comfort in the walker and sunglasses issues that She's pretty much on target with ferreting out what her problem might be. Once they get the infection treated you may find She's not quite as bad as you no fear. And I hope you find a bit of comfort in the hope. I wish I had sure concrete answers but I don't. It's a complicated disease but you've found one of the best places for people willing to help any way they can. Again welcome. Take care, best of luck and hang in there

By LOHENGR1N On 2014.12.12 00:04
Ibepar2, Hi and welcome to the forum. You've found a great place to get help and information on P.D. many, many people willing to help you in the journey through Parkinson's Disease here. I'm a person with Parkinson's so I'll leave your question for our many caregivers here to answer. Please feel free to ask any questions you have and We all here will try to help answer them. Again welcome to the forum. Take care, best of luck and hang in there

By Mary556 On 2014.12.12 22:53
kkoschemann, in case this might have any similarity to your situation... For a year or two my PWP had episodes of incontinence and worse confusion, but only when she had a UTI. Those were my clues to call her doctor to get her tested. As Lohengr1n suggested, maybe your PWP's infection is causing her incontinence and increase in confusion now? I am not knowledgeable about these things, but hope that once your loved one's infection is gone she may go back to her previous level. She does sound pretty sharp otherwise.

My PWP had an increase in dementia this summer and now she experiences urinary incontinence when she is asleep... not every night, but 50% of the time. During the day she wears Tena serenity ultimate pads (or Poise ultimate long pads) inside her cotton briefs for occasional leaks. At night, a Depend undergarment alone is not enough. But when we put her regular underwear with pad on top of Depends as double protection, it works to keep the bed dry, most of the time. If you get Depends through Amazon, look for the maximum absorbency "Economy Plus Pack". I recently discovered those are half the price of the regular ones we had been getting.

We use a PEVA mattress pad that is a comfortable fabric-like texture on one side and non-smelly, non-PVC plastic on the other. It has worked out very well. so I got another, removed the sides and cut it into two smaller flat pads and put one on top of a towel across the bed. If any dampness ever does go through the top sheet, it is easier to wash and dry a smaller pad. I put another one underneath the throw cover of my loved one's living room chair, though it has not been needed so far.

Best wishes and prayers for you and your PWP.

By carman96 On 2014.12.12 23:42
Kkoschman, PD is bad enough, but other health problems arise with advancing age. It is difficult to know which is which, but for sure PD complicates things.
I always thought a dowagers hump was caused by osteoporosis but could be posture too I suppose. My PWP husband has a hard time standing up straight, which is a PD thing for sure.
Hope things settle down for you and your PWP.
Welcome to the Forum.

By kkoschemann On 2014.12.16 14:48
Thanks to you all. Great recommendations and support (and hope). She is doing much better this week and excited about coming to our house for Christmas. I now have a plan to protect the furniture!

That infection did really play with her mind. She's still having some slips - but they are happy ones - like visiting with WW1 vet uncle Jimmy - rather than torture, etc.

Neurology visit next and we'll address some of these issues.

Thanks again!

By carman96 On 2014.12.17 10:35
Ibepar2 maybe you should repost your question about assisted living in a new thread. There are quite a few here who have had to make that decision, and can give you some support.


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