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OMAHA TOM last won the day on July 26

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  1. Superdecooper It is odd how when we actually get moving enough to awaken how we remember what we were dreaming. I have never been to Europe but always wanted to go there. Well I was in Germany waiting for a train sitting on a bench. Then 4 men came up to me criminal type. My Dad raised me to be street smart. With that when being out numbered you strike out first. A blue eyed blond man was attempting to situate himself behind me. So with my left foot I went for a body shot. The noise hitting the door got my wife up to check. It is very hard to tell reality from dream. Many times you are out of breath and your heart is pounding. So needless to say you know what I am explaining. Our family members hear us scream in fear, curse like a drunken sailor, laugh out loud, and fall out of bed jumping off a clift to escape a conflick. Those that don't have Rem Sleep Disorder are lucky. We do get injured. We wake up with bruises, sore shoulders or scrapes. I hate the meds we take to try to prevent the injury. It doesn't always work. And every morning it takes awhile to come out of the foggy feeling. There is no one size fits all with Parkinson's. Ya just have to deal with it. And what ever comes. Like I said there are those with worse. So we must be thankful. Heck i'm 64. I feel really sad to see children with difficulty. So what I have is nothing. Tom
  2. Superdecooper we have moved me to a room with no furniture other than a recliner I sleep in. The Rem continues even the klonipin (misspelled) doesn't stop it. Well the recliner was to close to the closet. I dreamed of being attacked and kicked the attacker. Knocked the sliding closet door off the rollers. Oh well .😃
  3. Ditto with dancing bear Flomax and don,t drink anything two hours before bed.
  4. The Parkinson's that we have does stop all the other non-parkinson's issues. But we all know the big P makes the non-ps worse. The hardest think in my case is just taking the others medicines. So Curious you have a right to vent. No sleep at night makes for a long day ahead of the fog, that going to do something and finding out you've done it already. OR that you know you put it away? What day is it. Then you sit in a chair and 1 hour later your shoulder wakes you up in pain. My wife still works and when she is gone I have no motivation. So I Just don't know how you can smile 24/7. The other side of us with Parkinson's is that we must push on with life. There are others that have it worse. Have you noticed that many times on your worst days those are the times someone needs your help. It might be a little thing like drive them to the parts store to buy a new battery for their car, watch a neighbors child so they can make an appointment, or something. We are important. tom
  5. Bluemoon as a man I don't know much about post after a baby. But i had a bad staph infection in the past and had blood tests taken by my new movement specialist. I found out that my immune system is making antibodies again my thyroid. While researching the thyroid I read where after pregnancy can effect the thyroid. I think Lad mentioned it. Might not hurt to mention it to your doctor. Maybe your tsh, t3,t4 might be a little out of synch. But then again a baby is allot of work. I tried helping my wife years back. The truth is if men had babies there probably would be allot of one child families. We are wippy in many areas! 😌
  6. MusicMan I wish there was a better medicine For REM SLEEP Disorder than Klonopin. My movement specialist earlier tried melatonin 15 ml and only .5 ml klonopin. I have for over 4 years shied from the nasty K. My dose was just raised to 1ml klonopin and melatonin doped back to 10 ml at bedtime. I can tell you it can put an elephant to sleep. I have during REM Sleep injured both shoulders, broke 2 lamps, lost count on how many times the chair I was sleeping in jipped up in a sleeping bag has fallen over. The last draw before I let the dose become 1 ml was because i came close to going throught the glass on the china cabinet on the other side if the room. We have now move the recliner I sleep in to another room where no furniture exists. My point is all things must be weighed out. Parkinson's is not a one size fits all. I hate klonopin! The sad part is we all can have things caused by normal aging as well. Parkinson's is not my only problem now. My recent Brain MRI sows micro vascular disease. The same thing my heart has. I thank God that a heart doctor figured out I had vascular disease of my capillaries and put me on meds to open those vessels. They helped slow down my brain damage. The best thing a person with a disease can do is get a second opinions. Nothing can predict the future on a drugs side effects. For some it is a pick of the better of two evils. See what happens. Have as much knowledge about the medicine as possible. Sometimes end up a catch 22. tom
  7. I don't know super if you have Rem Sleep Disorder. This is Just My Opinion. I have it often. When it happens you go into fight mode. With that many times I wake up not even knowing why. My wife tells me she gets up and checks on me. That's when the level of noise hits a point where she has learned I become combative. Allot of those times by the time she gets there I have woke up. I am in a state of daze. Breathing heavily but not knowing why I woke up. I overpower the sedative effect of the meds. When that happens I usually get up to go to the bathroom. After that going back to sleep is almost impossible. Before the meds I could tell you in clear detail the dreams. Now I only remember the most violent dreams. The ones that I knock over the recliner or find myself on the floor 10 ft. away from the chair. There are times I wake up with a very dry mouth. My wife says at those times I have been very vocal. What she has witnessed just before I come to I am screaming in fear. Again most of the time I don,t remember the dream. I just know my mouth is so dry I need a drink of water. No going back to sleep. We are all different with symptoms. It would be great if there was a uniform way to stop the symptoms. The brain is so complex. The forum members give us all many good things to try. The best thing about this forum is we all never have to worry about what others think here. We all are looking for answers and really listen to others experiences. Tom
  8. John I couldn't agree more. Plan ahead if possible. Part of planning is researching your doctor first and the hospital. Years back when I had a total knee. I found that the hospital where the operation was to take place had the highest rate of infection after knee operations. I did not go there. This isn't a 100% you won't get an infection. But if a hospital loses business because of bad reviews and sub par stats. The hospital loses money and good doctors won't operate there. They fix the problem. I wish money didn't get a person better health care . It seems to just be part of a broken system. (just my opinion) tom
  9. My wife was the youngest nurse to graduate from the college of St. Mary's Omaha. (17 when she started school) She has been a RN nurse 40 + years. I asked her about the care you received. Her answer was there must have not have been many hospitals to choose from. In Omaha our hospitals are competing for business. Fill out you survey if you get one. A nurse at pretty much any hospital here does not work long if they get complaints about their performance. Health care is like any business when it comes to employees. You have good and bad. Management good and bad as well. Answer your survey. Tom
  10. Stump glad you are unhurt. As I think back when I started falling it first was backwards. Just a suggestion keep an eye on your posture. I can't say for sure. But without even knowing it is happening you can start compensating by tilling your head and shoulders forward. (Just an opinion) I think we have a part of our brain that acts as a protective balance adjuster. No medical science about it. But in my case over time I humped forward shifting my weight forward. I no longer fall backwards. Now face first. Bent forward puts allot of strain on the low back, make less space for lung capacity , and can cause some gerd issues. A guess the thing about having something that progresses is all about slowing it down. Before this parkinson's or parkinsonism I was 5'9 and now I am under 5'6. Thank God I have kinda of a barley belly. Who knows without it. How short I could get!🙃 I think there are posture exercises that can keep you ahead of becoming bent. Just a thought. Hope your fishing has been fun. Tom
  11. Afroney Sound like you have a good team working on you health care. I have seen many people in my church get well . So I do believe that God is on that team! I think a SS lawyer can speed things up in emergency cases. Hope things improve . Tom
  12. Have a friend at church with mitrochondrial disease. He was a runner and played many sports. He really trained and was in turn with his body. His started in the muscle of both legs. Muscle cramps in his legs, Slight thyroid problem, fatigue and now spreading to his arms. He still exercises and it is progressive. It also lets lactic acid build up. Cramps. started in his forties. Now his sister is getting it. Rare but genetic. His dad had a disease but at that time there was no genetic decoding on that type. The doctor takes a sample of muscle tissue. Worth mentioning. Tom
  13. Just a thought. The human body is really a mystery. As time goes on medicine finds cures for many health problems. The cures that make us healthy are achievement for all mankind. Profits made on environmental hazard causing products are also looked at as great achievements. The laws are being changed in America that probably protected those who have the genetics making them more likely to become ill. When I first started working as a repair machinist. When those laws were not all in place. I washed dirty parts in carbon tetricloride (hiden in the back room), I machined pure nickle and hand sanded it as well, welded stainless steel, machined nylon for replacement of wore out parts, Chocked down allot of hazards from the smoke coming off those profits. And with those laws. Came a gov. dept. to get ahold of to assure a worker that protective masks and suits were at hand so our bad genes were put to the test I want my children and grand children to have a good income. But, I have wondered what caused the cells of my brain to die little by little as well as those on this forum.. It hasn't been a easy for none of us. The greatest minds can work on finding cures. A clean environment and a clean place to work also takes great minds. But all of us will end up with a little less money in our pockets. Now for the clicker. I had a pretty good income for a person that worked with his hands. Now retired. I reached in my pocket there was less money and I felt ill. My brain scan on Aug. 10 is going to take money again. We got to get to the cause first. That way when they find the cure. The money spent paying to get cured will probably be equal. At least we will have better health. Now I have to decide what's better environment regulations or money??? Didn't sleep much last night. Sorry tom
  14. Hello Dr. Okun my movement Dr. Sent me to see another movement specialist here in Omaha, that was from the Mayo clinic in Minnesota. ( Dr. Malinda Burdett) After Her assessment she said I have Parkinson's but my gait did not fit .(Ataxia) Dr. Burdett also also said I have eye nystagmas. Also ED was early symptom. Parkinson's first diagnosed just over 4 years ago. The doctor took a blood test to check (CK, IFE SPEP, Folate, Glutamic acid decarboxylase, Thyroid peroxidase antibody, Vit B12, And vit E. Also a brain MRI with and without contrast is scheduled. My ? is can a person have both Parkinson's disease and ataxia not caused by a metabolic problem. OR am I looking at a MSA-P or a SCA type disease. I will add I have a hard to treat Rem Sleep disorder problem. Last can ED at (55) be a symptom of a SCA type. Thank You Tom
  15. Afroney I hope your testing can come up with the correct diagnosis. There are so many diseases that symptoms overlap. The cerebellum and brainstem control everything. The autonomic system problems (blood pressure, heart, hormones, sweating, eye movement , and even breathing. All the SCA's, MSA-P, and on. Wed. I see a movement specialist. I couldn,t sleep and just read the posts. I feel for you. What the others don,t realize is the speed in which symptoms change. Once we get out around others with Parkinson's exercising. Then we see where we are not the norm. With ataxia our walk slows down to keep balance, shuffle to keep feet very close to the ground, stiffen up so we don't shift our wait to one side. The thing that happens is slowly we widen our feet further apart. Finally the doctor says I don't think PD. Cupped hands, where you end up fisting you hands to do push ups. I am in store for a brain Mri to look for atrophy of cerebellum and brain stem. Limbo sucks I have been reading your posts for a while closely. I hope your tests come up with an answer. Keep us informed . Tom
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