Tag Archives: support

I Over Did It

Day by Day with a Movement Disorder Posted on by 4

I’ve been going to the Physical Therapist for several weeks now, and I can see some improvement in arm strength. I have good days and bad days as far as neck and back pain go, so I’m still using the muscle relaxer and pain meds when I can’t take it any more. I’ve also gradually worked up to using the TENS unit the better part of the day now.

Just to give you an idea of how little it takes to fatigue my muscles – I’m doing 10 pulls with bent elbows of the easiest tubing, 7 without any tubing with elbows at my side moving my fists out as far as I can to the side, 10 shoulder shrugs, and 7 head turns each way. These are all held about 2 seconds each. And that’s it. The therapist doesn’t want me doing any more than that. Some workout, eh? I do that twice a day, but on some of the worst days I just didn’t feel like it was a good idea.

We’re still getting out of the house most days, not just for PT and doctor appointments, because I need to walk to keep my leg strength up. Standing and walking mean I’m holding my head up, even though I use the soft neck brace most of the time when we’re out.

Wednesday I just did too much. It’s my own fault, because I didn’t tell hubby my neck was bothering me as much as it was, so we didn’t come home as soon as we should have. I won’t make that mistake again. He and I have talked about it, and we’ve worked out a signal, so he’ll know I need to go home (that won’t upset him thinking something’s terribly wrong).

The therapist said he could definitely tell I’d over done things and told me to take it easy for the next few days. He said it’s not unusual for someone to over do when they’re beginning to feel a little better.

I’m so thankful my hubby and family are supportive. It’s sad when I read about people in the Facebook MITO groups whose families are unsympathetic. This is an invisible disease. I don’t LOOK sick, unless I’m wearing the neck brace. And that doesn’t telegraph my digestive and elimination problems, my cold and exercise intolerance, nor my memory issues.

Compared to others I’ve met online I’m very blessed to be as unaffected by my MITO as I am. I thank God for that.

Getting Back to “Normal” and Doing Some Soul Searching

Day by Day with a Movement Disorder Posted on by 17

I didn’t have any lasting bad effects from the Physical Therapy last week, and my neck continues to improve. The pain is essentially gone, although I do still have some stiffness, and certain activities still hurt. At least I am not hurting when I’m doing nothing!

I continue to limit my reading about Parkinson’s, but it sure is hard to intentionally stay away from Parkie friends I value so much. I had intended to stay away until I had the appointment with the Movement Disorder Specialist (MDS) in April, but I just couldn’t do it. They are too much a part of my life now. If I am diagnosed with something besides PD, I plan to keep up with them anyway. I did stay active in the Alzheimer’s caregiver forum I belonged to for quite awhile after our parents died, but I did finally quit visiting. Life moves on eventually.

I had another choking episode with a pill a couple of days ago that was really bad. That particular pill burns in the mouth, for some reason, if it doesn’t go down right away, and it burned in my throat when it got stuck. I ended up with a very sore throat that lasted until the next day. So, again, I’ve gone back to doing what my Gastroenterologist told me to do. Taking the pills in apple sauce instead of water makes all the difference. I’m just being lazy, and dealing with a heavy dose of apathy right now. That’s the only way to explain that it’s easier to get a glass of water than to open the fridge and get out the apple sauce and a spoon. I have gradually stopped doing several things he told me to do, and I need to get back to the straight and narrow, for my own sake, and my hubby’s. He worries about me so, often without good reason, other than he loves me. I must try to do all I can to keep from getting myself into situations like this that scare him so.

There was a post on Patients Like Me today that has me doing some heavy thinking. Basically, it was about how many Parkies avoid being around those PWP who are farther along in their stage of the disease, because they do not want to be confronted with their own possible future. I know I fit in that category, as I have intentionally not even tried to find a support group, and I have turned down some invitations to meet some online Parkie friends who live in Alabama, too. It’s one thing to read how they are doing, but quite another to see it for myself. I know that’s the way I would react, because I freaked out when I first looked at a free DVD I ordered that had real Parkinson’s people doing exercises. I haven’t watched it again. It does help, knowing that other PWP feel this way, too, but it’s not fair for those who are farther along, who are missing the support they need. It’s a reaction I’m going to have to work on, but not until after I see the MDS.

As it always seems to be, I get better in one area and regress in another. I guess that’s normal for everybody, right?

My Thanksgiving Prayer

Day by Day with a Movement Disorder Posted on by 4

This Thanksgiving will be our first without any of our parents with us. It’s the first Thanksgiving where our older daughter and her hubby take over the reins of being hosts, passed down from my Grandmother, to Mama, then to me, and now her. It’s a reminder that as things change, they really stay the same. It’s a reminder of how very important family is. And how important friends are.

It’s also a reminder that I am no longer the caregiver, a role I held for much of my married life. But now, I am “the sick one” in the family. Parkinson’s Disease does not have any cure in sight yet, but only ways to manage the symptoms, with varying degrees of success and often horrible side effects. It is progressively debilitating, which I’m daily reminded of, as I talk to so many PWP who are so much worse off than I am. I see it in the difference in what I can do now, compared to last Thanksgiving. But, I am so very thankful that I am still able to walk, talk normally, write fairly legibly, use the computer without problems, that my digestive problems are calming down somewhat, that I am sleeping better, and that I am mentally still ME. I pray that I can still say that next year.

You dear cyber friends, who have been a listening ear as I chronicled this journey, you will never know how much you have helped me deal with all that has been going on this last year. You have helped me give voice to my reactions to this disease. I can’t thank you all enough.

I pray that you will all have as wonderful a Thanksgiving as I will, surrounded by family, wrapped in love.

Amen

Bits of This and That

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I’ve been a good girl, and I’ve tried to use the C-Pap machine every night. I can only say try, because I’m still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn’t stand it past 1:30AM.

I’m pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I’m going to call the tech again this morning for another appointment, since I only have another week before I’m stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I’m starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I’m hoping she can find something else that I can use.

We’re in the middle of a cold wave right now, with high temperatures in the 90’s! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It’s really the only time of day that it’s safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we’ve been there in several weeks. Of course, I’ve been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I’ll walk a mile, but I won’t push it if I’m not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I’m supposed to call my Gastro this week to let him know how I’m doing. I’ll wait a few more days, just in case DH’s explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he’s probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I’ve not had tremors up until recently. Balance wasn’t so good yesterday, either. But I’m not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I’m not sure what I could wear that didn’t look like athletic shoes, but I’m going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I’ve been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can’t completely close my fists. My ankles are badly swollen, too, and my weight is up, which I’m assuming is fluid.

So, I’m still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

PatientsLikeMe Site Is AWESOME

Day by Day with a Movement Disorder Posted on by 2

I’ve spent a lot of time today exploring all the neat pages on the PatientsLikeMe site. I received an invitation to join, and now, I’d like to extend that invitation to all of you. It does involve putting in a lot of medical information about yourself, but I’ve already done that here, so I decided that shouldn’t stop me from joining. I’m so glad I did, as I’ve already read some posts on the forum that made me feel less strange and alone. I can see that the aggregation of data they are trying to achieve will be a fantastic tool for research and personal information.

So, here’s the link:

http://www.patientslikeme.com/

and here’s the personal profile I’ve been working on today.

http://www.patientslikeme.com/members/view/Dirty+Butter

They have it fixed so you can find all members who have the same symptoms, use the same meds, etc. as you.

All Your Wonderful Thoughts & Prayers

Day by Day with a Movement Disorder Posted on by 13

There’s just no way I can begin to tell you how much I’ve appreciated all the thoughtful comments you dear friends have been leaving, just to let me know you were thinking of me, and to express your condolences.

It’s hard to know how to get started again, after so much has gone on, but I guess the best thing to do is just start ….

I’m more rested, we’re dealing with the long To Do list that is involved in closing out Daddy’s affairs, and I’ve had a birthday.

I’m still resisting changing my PD meds, as we started going to the local walking track this week. I want to give myself a chance to build back some strength through exercise and Tai Chi first. My right arm and knee are still bothering me, but I’m taking less and less pain meds, so they must be getting better.

When I said on my last post that one journey ended and another was beginning, I was referring to myself just as much as Daddy. DH and I have had someone to take care of almost constantly for the last 10 years or more. It’s strange to be able to make plans without having to take someone else’s needs into account.

I have lots to do to get back up to speed with our blogs, BLOG VILLAGE, and our online sales, but I’m not pressuring myself. I’ll get it done gradually.

I look forward to getting back to reading all your great blogs that I’ve been missing, so bear with me, as it may be awhile before you see me commenting on everyone’s posts.

Time I Tried to Catch Up

Day by Day with a Movement Disorder Posted on by 2

I’ve ended up doing the very thing I really didn’t want to do, and that’s not keep this blog as a daily journal. It’s just that so much has been happening lately that I just had to put blogging way down on my priority list.

So…. here goes ………

Since I wrote last, Daddy has been much worse. There was a large bulge in his upper right colon area that no amount of enemas, suppositories, stool softeners, or laxatives seemed to be effecting at all. We are fortunate enough to live in the country, where doctors still treat their patients as individuals. So Friday, a week ago, Daddy’s primary care physician came out to the house after work! After feeling around on the area, he really didn’t think it was a bowel impaction, but there was no way for him to be sure. He suggested we put Daddy in the hospital for some tests. I spent the weekend deeply upset by that prospect, not knowing what was best for him. Dr. Mc understood that we had no intention of any type of surgery, if they did find anything other than fecal matter. On top of the rest of my misery over making this decision, he would be in the hospital I swore I would never take anyone to ever again.

I finally decided that I would be in worse shape emotionally if I didn’t at least give it a try, so I was in the hospital with Daddy for several days this last week. We came home Thursday, after the tests they did showed conclusively that it was not fecal matter. We stopped them from running any more tests, so it was left as a diagnosis of a soft tissue mass. I don’t need to know what it is … only that I can give him pain medicine, because it won’t be causing more constipation on a blocked bowel.

We also brought home new pressure sores, because it took lots of complaining to get them to change him and turn him. And, when they did handle him, most of them were not gentle with his skin. Did I say I hate that hospital??

One of the two really caring PCA’s gave me four hospital gowns to take home, which is a big help at this point.

Yesterday evening, when DH and I started to turn Daddy to change his Depends, he threw up all over the place. Considering the amount of food and liquid Frances had gotten in him, everything must have been sitting in his stomach all day!! He was obviously in pain, so I called the Hospice nurse, who advised that I not try to give him his night medicines or move him for at least an hour. We cleaned him up the best we could and managed to get towels between his skin and the sheets, etc., that were soaked.

After an hour, we changed everything out to clean, but it was obvious we were really hurting him with every turn. After reporting in to the nurse, she said not to feed him or give him any medicine, but to call again if he didn’t go to sleep comfortably on his own.

I called her back at 2:00AM, as things were worse again, and she told me to give him the morphine that absorbs through his mouth. She arrived about an hour later, as we are on the outside reach of this Hospice territory. He was running a temp, and his blood pressure was very high. We managed to get the blood pressure med in him that he had missed at supper time, plus a sublingual tablet for fever. I’m not sure what that was.

She then suggested I try to get some sleep, and she sat up with him for three hours, while I napped!! There’s a lot about this hospice I don’t like, but she moved them up a few notches in my estimation, in the wee hours of this morning!!!!!

Part of the reason I haven’t been blogging is that my right arm and hand have been in considerable pain and swelling since we went to the hospital. Thinking it would be enough, I only took my cane. By the time I had walked all over the place as they took Daddy for tests, I had put too much pressure on my arm, and I paid the price for not remembering to swap to the left hand often. Thank goodness, I had thought to pack my hot pad. So I spent his hospital time doping myself up with as much pain medicine as I dared to, and still staying awake enough to be harassing them to do their job. I just couldn’t manage the computer very well at all!! It looks like I’m going to have to learn how to use a mouse left handed … I’m pitifully uncoordinated as a lefty … far more so now with the PD.

I’m also fortunate that we had bought a really nice wheel walker with the seat in it some time ago at an Estate Sale. DH was very depressed when we bought it, but it was a blessing when my arm hurt so much.

I can’t thank you all enough for your prayers and kind thoughts while all this was going on. I knew you were worried about my sudden disappearance, and appreciate the emails I received. Just know that you have been supporting me, even though you didn’t know what was going on.

What a Difference the Right Equipment Makes!!

Day by Day with a Movement Disorder Posted on by 7

This morning was my first chance to take care of Daddy from a hospital bed that worked properly. It made quite a difference, although I still had problems getting him to follow my directions. I was able to change him out of the night Depends, clean him up, and get fresh ones on, put on socks, pants part way, and shoes, before I ever let the bed down for him to sit up. That is a BIG help. He rolled away from me, following my directions perfectly, but when it came time to roll toward me, he kept trying to climb over the rail!! DH heard me struggling to get his legs back in, and came and helped me get him on his side, so I could finish the Depends. Next time, I’ll put his trousers on around his ankles first, so it will kind of “hog tie” him. LOL

Having the right equipment does make all the difference in the world when care giving. I’ve been very concerned about Ruth and Mick, after seeing the terrible bruises he gets from a wheelchair that doesn’t fit his needs properly. I wrote The Voltage Gate and A Hearty Life, thinking that they might have some scientist friends who could help her adapt the wheelchair better. If you know anyone who might be able to help her, I sure would appreciate you sending them the link to her post.

Anyway, we continue to take one day at a time, even one hour at a time, with Daddy, just trying to keep him as comfortable and as mobile as we possibly can.

Ahhh To Sleep, Perchance to Dream

Day by Day with a Movement Disorder Posted on by 7

Thank goodness for Ambien. I called my Neurologist’s nurse yesterday and explained the situation with Daddy. She called in the prescription, and I had a good night’s sleep last night, for the first time in a week. Whew!! That felt good.

It will take me a few days to get over being so tired, I expect, but getting a good night’s sleep will make a world of difference in what I can accomplish without being totally exhausted. Maybe I can even get back to practicing my Tai Chi in Daddy’s living room. After going to all that trouble to learn it again, I sure don’t want to forget it. And it’s good for my balance and stamina, too.

I’ve been reading some articles lately that say Pilates is good for PWP (people with Parkinson’s), so that may be the next thing I look into. I haven’t been able to figure out from what I’ve read if these were specially modified Pilates classes or not. Of course, it would make a big difference if they were. Speaking of PWP, I’ve also found that Parkinson’s folks call themselves Parkies. Ain’t that cute? So I’m a PWP and a Parkie now.

One of the Hospice people tried unsuccessfully several times yesterday afternoon to call us from her cell phone. We live in the middle of nowhere, as far as cell coverage is concerned. “Can you hear me now” just won’t work out here. In fact, we had Verizon, and dropped it, because we couldn’t get it to work at all LOL. She never did come, and we never did get to talk to her, either.

I’m considering ordering DSL for here, so I don’t have to depend on my cell phone while I’m on the computer. Plus, for some reason, the program our church uses for editing our website just won’t let me FTP from here on dialup. It works fine at the house on DSL. I’m the church webmaster, and that has to be updated weekly.

As you may be able to tell, I’m in a pretty good mood today. It’s been over a week since he fell, and we’ve developed somewhat of a routine. Now that I know I will be able to sleep, I feel like we can handle whatever comes, between the two of us. We’ve had plenty of care giving experience, and we have Hospice for support. Our daughters and church family will help where they can, and we have our faith in God to hold us in the good and the bad times. What more could we ask.

Your prayers and kind thoughts are always appreciated, too. The effectual fervent prayer of a righteous man availeth much!

My Wonderful Christian Family

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I’ve been overwhelmed by the amount of concern that the people at church have shown to me since they have found out about my diagnosis. I’ve always known that our church members were particularly loving and compassionate when someone was sick or there was a death in a family, but I’m seeing it directed at me this time. We’ve recently had a greatly loved church member die of complications from Parkinson’s, which is probably why everyone has been so solicitous, too.

All I can say when they say how sorry they are to hear about the Parkinson’s diagnosis is that it’s OK, because that’s really the way I feel. I just haven’t gotten upset about it. I’m not saying I won’t at some point in the future, but for now, God’s GRACE is holding me steady.

I did have a chance to talk to the other person at church who has PD last night, to see if he had trouble with his stomach when he started on the meds. He didn’t have any problems at all, which I’m glad of, for his sake. I already had a very touchy digestive system, having just finished a long bout with colitis, so it’s not really surprising that the meds are giving me trouble. At least we’ve finally had a chance to talk, and it feels good knowing there’s someone I know who is going through the same thing I am, even though he’s much older than I am. He’s been on meds for five years already.