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MamaGull last won the day on November 6 2012

MamaGull had the most liked content!

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About MamaGull

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  • Birthday 01/01/1970

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  • Location
    Washington state
  • Interests
    Travel, genealogy, knitting, beading, quilting
  1. MamaGull

    Thoughts, suggestions, errata

    You are quite right, and I too am amazed that the results would have been phrased that way. BAD call. In our situation, DH read through the results and didn't say much. At about this same time he was contemplating rejoining the glider club that we'd been very active with before we moved to Kansas. When the move back to the Seattle area happened, we were very excited about getting back in the air with our friends. DH didn't really want to get back into instructing again, and knew that he couldn't fly the towplane due to the PD issues in his left arm. Just a recreational flight or two every so often - that would be wonderful. But when the time came to get serious about it, I wasn't sure if this was something that was honestly a 'good thing'. Fortunately we were able to talk to a few people about the situation, and a plan of action was drawn up. The club's Safety Officer took DH up in one of the 2-seaters, and DH did as much of the flying as he felt confident/competant to do. The end result, after a lot of contemplation on his part, DH realized that flying required the ability to make split second decisions and act upon them. This, he admitted, he no longer felt confident that he could trust himself to do. So flying solo is out. DH is able to do a LOT of things today, but he is also realistic about what lies ahead. He has ridden thousands of miles on his bicycles - 100 mile 'centuries' in the midwest, one week tours in the Colorado Rockies. None of those lie in his future today, but he still has one of his bikes, and has bought a recumbent trike for when the balance goes. Rather than flying, he returned to another pursuit from his past - racing go karts. This has been a real test, and I encourage him to keep going as long as he can. It keeps him engaged and in pursuit of a goal. He also continues to plink on his guitars - he is unilaterally affected on the left side, so getting the chords right is a challenge. I can tell how well the sinemet is working by how well he is or is not playing. It is worthwhile to investigate the psych tests, if not for the PWP then certainly for the caregiver. As they lose skills, we must pick up the slack. I took over paying the bills when DH was over and/or underpaying; I had to wait until he had us in a bit of a pickle to suggest that it would be better for me to do this job, and be bloody diplomatic as well. As I have struggled through doing the income taxes the past few years, he has been very open that he was glad I had taken that chore off his hands. Since his retirement the taxes have gotten more complicated for me. Any major decision-making should be tackled as early as possible with PD. Make sure that your will, durable power of attorney, living will and all other legal issues are dealt with while your PWP is still in good mental health. Make sure that all is put into writing. Cover all the bases so that there can be no challenges at a later date as to what your PWP 'would have wanted'. This is especially important with the living will. At this point in time I am so grateful that we have done all of the paperwork. DH was dx w/lymphoma earlier this month, and we are 10 days away from the appointment at which we will learn the results of all of the staging tests that are being done now. In the time since his original PD dx, I've learned a fair amount about the meds involved in PD - now I will be doing the same thing for cancer, as well as trying to find someone who has been through this themselves. Should that search fail, then my goal will be to try to coordinate with all of the doctors involved so that we don't start administering meds that will complicate the PD. One I've already learned about: a common class of meds used for PD are dopamine agonists (Mirapex, Requip) whose purpose is to enhance the job being done by the remaining dopamine cells. With chemo a common side effect is nausea, and the drugs used to reduce the nausea are dopamine antagonists - they try to shut down the dopamine. Those drugs are obviously NOT a good idea for my DH. With chemo quite probable in the near future, I'm scurrying to find other alternatives... The job of being a PD caregiver is unrelenting, and often it feels unforgiving as well. It is hard work, but if the payoff is a good quality of life for my DH, then so be it. Just make sure the bottle of wine is chilled and the bubblebath jug is full! You'll find me in the tub when I need to charge my batteries!!!
  2. It's been a while since I've cruised this forum, but came back tonight after posting a question for the docs. Skimming through the first thread was interesting - I recognize, identify and sympathise with the conversation about our PWP's that are showing loss of cognitive skills and depression. The first time I made some off-hand remarks to my husband about the occasional confusion that I was seeing, he got a bit huffy and said that all he was dealing with was old/advancing age. Didn't take a rocket scientist to see that my formerly very sharp mate wasn't aware of all that was happening to him. I had a chance to talk to his neuro alone and asked if she would consider suggesting that my hubby take a full battery of psych tests. She agreed, and told him that it was good to establish a baseline. The results of the tests? He had lost both cognitive and executive decision making skills. It took a bit for him to accept this, but now, nearly 3 years later, he does acknowledge that he has lost ground. If you feel that it would be helpful to know just where your PWP is mentally, enlist the aid of his/her neuro to get a round of psych tests. Overall it is a good idea to have a baseline, no matter, but if you feel that there has been some loss, this is even more important. As to the problems with depression - in your PWP and the family - this is very common. The trick is to find an antidepressant that will work and at the same time not conflict with the PD meds. We have found that Wellbutrin makes a huge difference for my husband. As he started to see it benefitting him, he also was able to recognize if he was running into a rough patch, at which time he'd up the dose for a bit. When we, the caregivers, feel most frustrated with the changes we are seeing, it is more important than anything else to remember that those changes are the PD - not something that our PWP is/isn't doing intentionally.... Of late, my PWP has been saying some hurtful things, and I regularly remind myself of the caregiver's mantra "It isn't him talking, it is the PD". Never mind that I've been biting my tongue until it nearly bleeds.... Being the caregiver is a TOUGH job - made worse when we also have our growing family to care for as well. The good days are great, the not so hot days leave us wondering how we'll be able to continue with this for how many years to come. This is when it is vital that we have a support group - local or onine - but a group of other caregivers who UNDERSTAND what we are talking about. They've 'been there, done that', and best of all, they know precisely the oddities of PD. It continues to astound me that the overall perception of PD is that it is a disease that makes a person shake... It is important that every caregiver takes care of themself FIRST; you have got to take 'you' time in order to function well. If you are stressed out, your relative effectiveness when it comes to caring for your family and/or PWP is significantly reduced. Take time to take care of yourself. Best wishes - Sharon
  3. MamaGull

    Looking at Assisted Living

    GG - when were your mother's meds last adjusted? First thing I'd recommend would be seeing the neuro, updating him/her on your mother's situation and seeing what meds may be adding to her problems. Second - respite care can be a big help. Finding someone that your mother is comfortable can go a long way toward avoiding the assisted living/nursing home decision. Best wishes - Sharon
  4. MamaGull

    Not a new issue, but scared for my Dad

    Hi Chris If your folks are not happy with how the doctor treats the PD and/or your parents, then find another doctor. IF there is a MDS (Motion Disorder Specialist) in the area, go there. These are neuros who have taken additional studies on illnesses of this nature, and PD certainly ranks right up at the top of the list. It makes a world of difference to be seen by a physician who takes the time to listen to you, answer any and all questions, explain the whys and hows of this God-awful disease, and to search out the best treatment for your dad. We've been very fortunate with my DH/PWP's neuro, as she is knowledgeable about the various medications - explains how they work and what dose levels are within the norms, then lets my DH work out the best protocol for himself. The support of a good doctor can make all the difference in the world - hope your folks find the same for your dad. Sharon, CG
  5. MamaGull

    More thoughts

    Fascinating conversation in this thread. My DH is also my PWP - dx coming up on 3 yrs ago, just after his 63rd b'day. The comments earlier about PD developing by way of 'habit' or stress at a very early age in life don't make sense with his background - very stable and enriched childhood, and still pretty much the same. The only blip in the history that correlates with the eventual diagnosis was the exposure to pesticides etc during high school/college years. His dad was a cropduster in south San Joaquin valley for over 30 yrs, and DH's summer job was helping load the hopper and/or flagging the fields (standing at the end of each pass to mark where to start the next one). The list of toxins that he was exposed to which have since been banned is terribly long. There have been a number of instances of a relationship between the exposure to toxins and developing PD in later years. At the time of the dx, he had just accepted the offer of a transfer from Kansas to the Seattle area, which kept him so busy that he didn't have time to experience the post-dx stages. Eventually the dust settled and the one reaction to it all was the depression. But he has had a very competitive nature all his life, and has taken that approach to 'the dragon'. While living in KS he was a long-distance bike rider - from May to Oct there was at least one 'century' (100 mile one-day ride) each month. When he got a taste of riding in the Rockies, he added 1-week Tours to the agenda. Between 2001 and 2004 he participated in at least one of the organized tours each summer; week-long rides averaging about 70 miles/day, and the aggregate elevation gain during the week always exceeded 25,000 feet. Then he learned about the ride that became his personal Holy Grail: the Triple Bypass - a one day ride from Bergen Park (west side of Denver) to Avon (west of Vail). 120 miles (58 uphill, 2 flat, 60 downhill) and 3 passes; Loveland at just shy of 12,000' is the monster. He first rode the Triple in '03, but had to accept a ride for one leg, which left him with the resolve that next year would be different. In '04 we went to the mountains earlier than any previous trip so he could acclimate and train. It paid off, as he rode every bloody mile that year. What we didn't realize at that time was how much of another deficit he overcame that day: we'd commented over the previous months how odd it was that his left arm didn't swing normally when he walked, and how it seemed to be permanently bent at the elbow. I had noticed how slowly he ate because it took so much longer to get the fork from the plate to the mouth. You know where this is going, of course. We've been in Washington for 2 1/2 years now, and he is battling 'the dragon' at full tilt. Sleep issues prompted him to retire at the end of August. He still rides his bike, although no centuries. The last long ride was July of '05, when he rode the Seattle To Portland - a 2-day ride of over 200 miles. The second day was a real struggle. In acknowledgement of the slipping balance he has bought a 3-wheel recumbent bike - no tipping over and a short distance to the ground! But it gets very little use. We live on a bloody steep hill (20% grade down to the next block) that keeps him in touch with mountain riding - the air is a lot thicker here though! He's made some adjustments; the plan of returning to flying gliders has been shelved, as he admits that making snap judement calls has gone with the erosion of executive decision-making skills. There is a cane in the corner, but it gathers dust. On the other hand, he has taken up competitive go-karting again (something he did from his mid-teens to late twenties), and the beast in the garage gives him great pleasure as he finds that there are still a few good miles left in him. He knows this phase won't last as long as he wants; every time he comes home from a day at the track he can barely lift his arms. Our motto is to play as long and as hard as we can, so we are outfitting our newly-acquired RV for an expedition to Alaska next summer. The snow will chase us south! I'm very interested in how John S and JohnBall will evaluate my DH's situation with respect to their earlier observations. Peace... Sharon
  6. MamaGull

    More thoughts

    That one is ticklish to answer - sinemet, mirapex and requip are specifically used for non-PD treatments. I take requip to keep my RLS under control, my mom has taken all of those meds, had stalevo suggested as well, and has finally found relief from her very severe RLS using the Neupro patch. I tried mirapex, and it didn't help at all. Are you asking if there are any unusual responses in non-PD users? Sharon
  7. MamaGull

    My dad has PD, I can't handle his decline.

    Reading your last post, I thought I'd take a different approach. How about I float a few ideas past you? (point of reference, I'm 56, husband is 65 and was diagnosed 3 years ago; our son is 29) Do you feel the need to seek counselling, or to attend support meetings to help YOU, or to help you communicate better with your father? Do you and he communicate well about things other than PD - your school, activities, things he likes? I'm no help about communicating with dads that can't open up, mine is the same way, and after too many years I've quit trying. But I have learned a few things from him.... I haven't met very many guys that don't have a stubborn streak somewhere, some are just a whole lot more obvious about it. The more stubborn, the harder it is for these guys to open up (or so I've found), and there is too frequently a pointed avoidance of seeking medical attention, no matter how serious the situation. Sometimes stereotyping happens because we've seen the same behavior repeated by the same group of people over time - nothing judgemental, just making the observation. That said; it is VERY difficult for any man to be told that 'the life you expected to live ends today; you now have a degenerative neurological disease that will, over an undetermined period of time, rob you of your dreams'. Any research into PD makes that even worse - learning that at some time in the future things you take for granted may turn into daily struggles - swallowing is the one my husband finally admits that he fears. We know of the most common - walking is the big one, talking is a problem as well. There are many more. Talking about PD is twice as hard as anything else; if you talk about it, that implies that you have accepted it (and all of the implications as well) in your own mind. There seems to be way too little gray territory - too many people live in black or white. "I've got PD, I'm going to end up in a wheelchair with a feeding tube and a catheter, unable to communicate because my voice will be gone, for all intents and purposes a vegetable." You and I know there is at most a grain of truth in some of this, but the picture will be far less bleak than the imagination... It has taken me a while to sort out the approach to discussing PD with my husband - I don't ask him pointed questions about it. He knows that I'm involved with an online support group for PD caregivers, and I found that if I just talk about some of the things that others are running into, he starts to open up to me. The other time that he opens up is when we are driving - fewer distractions and nobody else can overhear our conversation. Let me know what you think, okay?
  8. MamaGull

    mood swings

    Hmm, guess I'll cover the obvious first - women and mood swings are synonomous. You say she is young - my interpretation would be that she has Young Onset PD, like Michael J. Fox. Sinamet, mirapex and stalevo are all meds that are intended to help her movement issues/challenges. Clozapine is a drug from within the psychiatric field, and could be a part of the mood swings - when the med gets low, she may swing more than usual. Have you asked her about this? If you're feeling serious about her, maybe you could go with her to see her neurologist. You'd be able to ask questions from one of the best-qualified people to help you understand. My best wishes to you - Sharon - CG
  9. MamaGull

    The Dragon

    I take Requip for RLS - without it my life would be miserable. My husband - PWP - is significantly better able to move, to function, with minimal dose of sinemet plus mirapex. Requip made him sleepy, so he doesn't use it. The Neupro patch has, so far, proven to have insignificant effect. Yes, there are long lists of side effects for agonists. There are long lists of side effects for ALL of the new meds that are coming on the market, be they for ED, bladder control, prostate issues, you name it. I don't think it is fair to say that a medication should not be used because it has too many potential side effects. I do think it is appropriate to keep an open mind and to give a med that MIGHT be of benefit a fair chance. Some people are hypersensitive to drugs - both my mother and I deal with this problem. So we know that when a doc says 'try this med, start at 1 mg' that we're going to split that 1 mg tablet into 16 pieces for that first week... I am dead serious about this - even now mom uses 2/3 of a 2 mg Neupro patch to control HER RLS. She deals with RLS from around noon until 3 or 4 am if NOT on Neupro, but on it she has found a whole new life. Each of us have to make our own decision about drugs; and it is wise to remember that what you read is only THAT PERSON's OPINION. Consider this, weigh the pros and cons, then make the choice that you feel most comfortable with. After all, it is YOUR life, and God knows how PD does its' best to take that life away from you. Best - Sharon CG
  10. MamaGull

    My dad has PD, I can't handle his decline.

    Have you looked around for Parkinson's support groups - not necessarily a group for folks your age, but for family members of PWP's. Depending on where you live, there are quite probably some excellent resources to lean on. My PWP and I learned that support groups of your peers - others who have walked in the shoes that you are just now learning to wear - was a life-saver. Our son was diagnosed with a serious mental illness when he was 19, and this sort of thing can easily tear a marriage apart. We found a group of people who had family members with equally debilitating mental diseases, and through those people we learned how to cope. We were given survival techniques, and lots of encouragement. There are all sorts of lists on the PD websites, and my recommendation is to hunt up a support group. Attend a meeting or two - if you don't feel 'right' with one, try another. As you've found out, PD isn't something that you can deal with alone - and the more help you can get from caring, understanding folks, the better you'll be able to manage AND to help your Mom. Best wishes - Sharon 56 CG to 65 PWP
  11. MamaGull

    A poll, sort of....

    Thank you, Marie, for your wise words. He is 65, retired earlier than he wanted because of his sleep issues, and is a tad unhappy about that even now. He isn't projecting the future, which is a good thing (he leaves that up to me...). His attitude is typically pretty good about dealing with it, but this last weekend he lost it - coping skills worn thin, I think, and he pretty much threw a temper tantrum at me. Most was easily shrugged off, fortunately, and the wonderful support that I got from my own CG forum online helped with the bad spot. He's not the type to get into denial issues (we leave that for our daughter to do...), and generally has had a good attitude. My feeling is that he hit a 'speed bump', if you will, and unloaded. I've told him that being angry at PD is great, just don't take it out on me. Because I've been a member of a terrific CG forum, I know a lot more about what lies in the future, but do not discuss it with him unless he asks. Even then, I keep things to a bare minimum. Like most, I went through a period of seeing all the negatives, anticipating - the whole gamut, but am past that stage and just hunkering down for the fight that lies ahead. I'll be looking for the book that you recommended - it sounds like just the thing - for both of us! Yes, he is on Lexapro, but admits that there are times when it isn't doing the best job. My suspicion is that he needs to be treated by a psychiatrist for the depression, not the neurologist. He has a lot of trouble with voice - soft - and for the first time voluntarily attended a voice therapy group session nearby. Said there wasn't that much said about speech therapy, more like a regular coping group, and I hope he continues to attend. Thanks bunches ~~
  12. MamaGull

    A poll, sort of....

    Thank you, ladies, for the wonderful posts. Although my PWP thinks that he doesn't have long to be happy (his words) I don't believe it. Yes, he has some problems walking at times, but he's still on his bike! Balance isn't so bad that he has fallen. Sure, he isn't the guy he was 2 or 3 years ago, but he's not in a wheelchair or totally frozen up. Maybe a few cogs have slipped in the brain, but he's still able to work both his 3x3 AND 5x5 Rubik's cubes, and has tackled a Sudoku rubik cube too. Now to convince HIM that he's better than he thinks! Sharon
  13. MamaGull

    A poll, sort of....

    Hi all - my DH is my PWP, 2 1/2 yrs post-diagnosis and at least 5 or 6 yrs since first symptoms... What I'd really like to know is this: How old were you when you were diagnosed - how many years since diagnosis? How long have you been able to live with 'minimal' impact on your life? What sort of activities have you continued from pre-PD days - ie: bike riding, travel, boating, hiking, any pilots out there? I appreciate your input - I think it would be encouraging to newcomers to this disease to know that just because the Dr has handed down 'the word', it isn't a death sentence. Thank you big time - Sharon
  14. MamaGull

    Assisted 'departure'

    The ONLY way that you can guarantee that your wishes will be carried out is with a living will. Your family may be okay with it now, but that can change. It takes courage to sit down with the paperwork in front of you - and to fill it in - but you will have peace of mind knowing that your wishes will be carried out when you may no longer be able to articulate your wishes. Hugs, Sharon
  15. MamaGull

    New forum at Yahoo groups

    Max, you really hit the nail on the head with your last sentence. My PWP is starting to lose ground - not a major loss, but enough that his frustration gets focused on me. He has no concept of how this affects me - not only am I dealing with someone who only resembles the man I married 30 years ago, now I'm trying to walk on broken glass so as to avoid adding to his anger. It is a fine line, and not always well marked. There is no way on earth that I'd consider leaving him - although at times he seems to be intent on driving me away. Most of the time I can shrug this off, but not always, and that tears me apart. He's past seeing what his actions do to me, and I guess that is what hurts the most. Twitchy, I truly appreciate your statment: "And bless those of us who have people who care and understand that this isn't something we chose... it's something we don't understand. And... they still love! " We get angry at the PD dragon too! John - to read that "I've been living an almost normal life for 25 years since my diagnosis" gives me hope. My PWP seems to think that he only has a few good years left, and I'll share your report with him. Maybe he won't be quite so frustrated and quit focusing in on himself! Max, you give me hope... "But I must admit, I didn't try to enrich our relationship. I took her for granted. She still needed emotional support, and I didn't know. We started to drift apart, each of us doing our own thing. We would rarely do things together. I would go out to a movie by myself or go for a bike ride alone. She would go for her dog walks twice a day alone, or so I thought. She found someone who gave her the emotional support she needed, and they eventually feel in love. We were never bad to each other, we loved each other like soul mates. I never realized how much she needed emotional support. All I can say to anyone reading this, it to love your partner, talk to them and realize the pain they are going through too. They need lots of hugs and appreciation and never take them for granted. " I'm sorry that she left you, and even sorrier that you came to these realizations too late. You sound like an awesome guy! Have to admit that I wish you could give my DH a real chewing out! Hugs guys, from a caregiver who is having trouble sorting out this high-wire act.... Sharon