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OMAHA TOM

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OMAHA TOM last won the day on May 7

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  1. OMAHA TOM

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    All three of you sure seem lucky in that what you type is easy to read. Your cognitive side of PD looks untouched. I base my observation on comparing posts. There are days I reread my posts and wonder how to work on not leaving words out. No matter how hard I try brain lapse of topic must be lost. I use to love to ride bikes with my wife. My wife will be retiring in about a year and a half. I have wanted to get a recumbent bike. Thanks for posting about the Profhand product. Also all your positive examples of not giving up. Finding a way. Helps. Cleaned and reorganized the garage yesterday. Took all day many rest breaks. Now that it is organized. Probably will look for days to find the new place items ended up. Should be easy to find because We have three of everything. When We can't find what we are looking for. I buy a new one. LOL tom my wife says we should have a garage sale. Hardly used items. LOL
  2. I agree with waruna. Symptoms take some time to come out. And just in my experience when a symptoms is there over time it happens more often as time goes on. My last daughter is 24 and going to college. Look at the whole picture. It could be stress related. Now this is just an opinion. I have no idea where you are in your life. My daughter studies long hours, works a job, tries to have a social life. To add America 's job market is changing so much it is hard to choose the best area of that market for long term stability. All of what I have just mentioned can make anyone tense. I tell my daughter sleep is important for the brain to rest. If you are in college look at the load of credit hours you are taking. Could be cut back to say 12 credit hours. I think you can still get loans. IIf you are not in college just look at what you are asking of yourself. I may be wrong. I have just given you something to consider. Now if I am partly correct about stress. Try to adjust by lowering your stress level. If Symptoms continue and get worse see a doctor. Just a suggestion. tom
  3. I agree with Linda Garren . Something I have learned from being a husband to a RN. (over 38yrs) Intensive care, Heart pace maker, ER Dept. If you look at Linda's work history. When Linda looks for doctors they tend to know who has the best track record. Since Linda has what we have and in her training knows to look at the whole picture. Just my opinion. Her advise is based on experience. Our problem is low dopamine. The longer we have our disease the less our bodies produce. Get an ok from your doctor to increase a little more. I can tell you from my personal experience with loss of sleep. There will be a higher probability of worse cognition because of not enough sleep. You will not feel better if the cause is too low of dopamine. Little steps, one day at a time. tom
  4. Miracle seeker, progression must be different as well. Maybe the effects of Parkinson's for many us settles in areas we have injured before. Maybe those areas didn't have a full range of movement at the start. I would guess if a woman had ostraleoporisis (spelling da) the spine would be effected. There are days we all just wish we woke up and this was all just a bad dream. No, we can only take each day and with that hope it turns out ok.
  5. 10K I can relate to your feelings. My Dad passed in 2000. Dad had a genetic type terminal Leukemia that turns into a type b cell Lymphoma. I had a son from a previous marriage that his mom remarried and move away when he was ten over 1000 miles away. Before he moved away I spent every chance I had to be with him. I wanted to be his father and not disrupt his life. I read Pathfinders post about priority. My Dad was in and out of the hospital so many times and live in the same city. That it was easy for me to get to the hospital if needed. My Dad was like yours in that many times we were told he would not come home again. It changed many plans for the whole family. But when you are within a hour away it is in many cases easy to change plans. But in my life and I am assuming in your life as a child your Father made you his priority. He wanted you safe, well taken care of and happy. But most of all to turn into a loving person. A person that grows up to be a parent that must make decisions best for their children. There came a time where my father went into the hospital at the same time my son came in on a flight for our yearly week visit. I Knew at that time in his life how much that meant to my son. Part of that visit was a one on one small trip. Over a three year time of my Dads life I would say there were15 times my Dad had hospital stays where he would not make it. My son and I when he came into town from the airport went straight to the hospital to see his grandfather (my Dad). My dad told us to go as planned. We then left to go on our yearly one on one excursion. It was three hours away. I left a phone number to be contacted in case of emergency. We received the phone call. But we did not get back in time. My son and his step siblings are all grown up now. They all have children of their own. I am older now and have parkinson's that now appears to be something worse. At the time of my Fathers passing I struggled that I was not there. But now know that there are decisions we make by how we are brought up. My Father new when we are no longer are children and become adult we might move away. He knew that move could make a life better for his grand children. As he wanted to meet the needs for you! He would know he raised you to make the right chose. Your daughter is 5 months old. You just can't pick up and go. Your Father Knows you love him! Your mom in time also will know that your Dad would want you to keep your children the top priority. The same he did for you. Just my opinion. Grandfather PWP
  6. Linda you are so right we are all different. Raising my dose is helping but not nearly as much now. The symptom of balance and walking speed has slowed faster then ever before. My Rem Sleep Disorder has also increased probably two fold. My are have been more painful. My hands would take a roller pin to flatten them straight. The odd part my tremor has lessened. And the blood pressure dizziness has worsen. Doctor wants wants more testing. MRI of head. Wants a closer look at the cerebellum and b stem. Well I guess one day at a time. One thing about being awake when everyone is sleeping. Too much time to think. tom
  7. I agree with Gardener that you might talk to your Dr. about a sinemet Er. . The regular sinemet 1/2 life is about 2 hours on average. So a 5 pm dose at 7am would be close to gone. I take a slow time release at bed time and it made symptoms better for some time. Part of what we have is a ongoing progression. Adjusting is a fact of PD.
  8. Afroney I am having the same new symptoms . My hands hurt so bad at night and are getting numbness. With that my manual dexterity has gotten much worse. The doctors has just added 1 more pill sinemet a day (100ml) to see if it will help with increasing off time. I am going to be getting more testing soon. I have had an increase in hypo static blood pressure and worsening Rem S disorder. My progression seems to be moving at a fast pace. It is what it is. I get up each day and keep going. What the hell else can a person do. tom pwp-maybe?
  9. Chuck you have my support in what you choose. Every day a person wakes up is a risk. In our case the more options the better. Anyway you choose there really is not a incorrect decision. If one thinks about it. No one can know how the other choses would turn out. I guess that is probably the best way to look at a decision when one did their homework. From reading your posts you are doing that homework. The longer we live we learn to know everything about the options. With that there are no regrets. I HOPE THE BEST FOR YOU! tom
  10. Been awake for awhile. Everyone"s road with parkinson's disease or diseases very close to PD are not the same. When we go to events where we are among people like ourselves. We can see that our disease effects us all in ways many times differently. The mutated protein in our brain seems to localize in pathways responsible for specific functions. So our treatments are adjusted to what works best for our individual needs. I think it would be safe to say all of us have a common goal. We all want to be as close to normal as possible. It is very hard to go out in public when we are off. Once the meds fail something like DBS is an option for many to regain a social life again. Think about off times. Those times when your are so slow, or shake out of control, can,t stick a fork in a salad, maybe drool. No need to say more. If something just works for 5 more years or even less (IMO) and you are a good candidate for something that has a risk. For most IT WOULD BE WORTH THAT RISK. I was lucky that people did't notice my function until about 57. I socially went out allot in a comfortable setting. Anyone (IMO) deserves our support when they have made their decisions on what is best for them! tom
  11. Hello Chuck It is difficult to make decisions. I am no doctor but personal chose can be different for two people with the almost exact symptoms. I thought that things were improving because over the last two months my tremor has seemed to lessen. At the same time my flexibility has gotten worse. Falling has caused me to slow down even more. If just two months ago someone told me DBS an option I may have looked at it. (balance issues a negative for success) It would be interesting to know how long it took those that had the procedure done. How old they were. How long they had the disease. Also if they made a list on of functions that DBS would help them with. With that said there are many on the forum very happy they decided to do so. Some things just take time to weight out. In my case at 64 with sports injuries, Children all grown up, wife almost retired, and nest egg set aside that My wife in good health will need more that me. Life deals everyone a hand to play. You sound to me to be a person that weighs things out. What ever you decide will be a concrete decision. Those are the best kind (IMO). It will all work out. Keep positive! Tom
  12. Chuck172 My observation of other in exercise class seems that tremor is one of those gray areas. Meds work for some. But it seems stress brings it out. I noticed that those with tremor shake worse the tired they get. There are those that swear about Sinemet working to improve it. My tremor was secondary to balance issues, stiffness, cramps, and rem sleep disorder. My tremor has of late lessoned and I have become stiffer and worse balance. Not to scare anyone but I think tremor dominate though not being great to have IMO function better. Last week I had my 6 month with the doctor. I am struggling in that the doctor is thinking MSA-P. I have not told my wife. I need more testing. I have not at this point decided to have more. It is not easy to handle all the unknowns. Best advise keep moving and remember Parkinsonism has many gray areas. No one can predict tomorrow ! Live each day and the next is a new one and live it. Even those in perfect health are in that same boat. Tom PWP???
  13. KimD hello I am Tom PWP. My MOM does not have Parkinson's and she is 90+ and has the start of dementia. Just an opinion. We all helped take care of my mom (brothers and a sister.) My sister and I helped her the most. Now my sister has had to be her major caretaker. Having Parkinson's is a tough go. But being a lone caretaker is even harder. I think you answered your own concern about your father in law. My mom still has allot of cognitive function. She can barely get around now. My sister and I just talked last week about what is best for our mom. Your father in law sounds much like our mom. You know if your father in law could only use a walker would be at the wedding. No matter how hard it would be for him. If his cognition is such that he knows and feels it is important for him to be there. That would be hard for you yes. The end result you would have peace of mind you got him to that wedding. My mom refuses to leave her home. If she falls, has a heart attack, a stroke and passes at home. That is what she wants. My sister does everything for our mother now. When moms cognition fails then she no longer will know what makes her happy. Your father in law holds a place for you in his heart. You sacrifice your life he knows. He can only depend on you. The rest of the family have not helped. When he passes. You will be the only person of the living members of your family that didn't turn their back on him. It says something about who you are! When you look back and others look back. There are good people in this world. You are one of them! Tom PWP
  14. Tweets32 I hope you get things adjusted. People here on the forum are very understanding. Just saying hello. Tom from the middle of the USA. PWP
  15. Carlos61 I agree with John on loss of smell. I think from experience after 7 years of symptoms an added symptom you should notice is getting slower, taking more time to do things. I am guessing you might be 61. I had hard physical labor jobs most of my life. Wear and tear takes it toll. You might also get a good check on your c-spine. Besides parkinson's many of us get normal wear and tear just like anyone. But there are many things that low dopamine tends to produce. Drag a leg a little while you walk, an arm swings less back and forth less during walking, some blink their eyes just a few times/min., we can have a stiff face with little expression. Try a chiropractor. It will surprise you what they know about symptoms that come from certain nerve roots. Going to a reputable chiropractor can't hurt. The problem with pain meds is that the body over time needs more to relieve the pain. Narrow the possibilities for the cause of your pain. Just a thought. PWP Tom and someone with normal wear and tear from hard work.
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