Helping Those Who Care for Parkinson's Patients
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I have been reading the posts for awhile, but hadn't posted. So hard to know where to begin. My husband of 54 yrs was hospitalized with kidney failure in 2012. While there, they found that he had had a basal ganglia stroke sometime previously. I believe I know when he had it a couple of yrs earlier. He had started shaking, grabbed for counter, fell on kitchen floor and vomited profusely, but refused to go to hospital, when ambulance came. He said he was fine, but I noticed that he was dragging his left foot slightly sometime after that. In March 2015, when he got out of bed, he could not walk (couldn't get his feet to move). Finally, I helped him shuffle to bathroom and he walked into the side of the doorway. He had appt. for lab work at his pcp that morning; so I took him there, but his DR wouldn't see him, although I gave nurse a note describing his symptoms. He didn't want to go to hospital; so I got him back into our car.( by then he was taking little short steps and breaking into a run) and went home. Our son brought a walker, which he used a couple of days and then he was back to walking as his normal. Went to PCP and got an order for an MRI. Showed a small vessle stroke, as well as, some other ones. Dr referred him to a neurologist and he sent him to physical therapy. He was able to do the walk with a walker and with PT telling him to take bigger steps every couple of steps, but did not practice at home and just reverted back to shuffling very slowly without walker. We never got any diagnosis or prognosis...PT 5 times. Same as before... walks with walker there, gets in and out of car like they show him. |
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| I am not a doctor. My husband is the person with Parkinson’s. But, two things here...First, I am not a doctor, but I have had two strokes...one was three years ago. I suffered no effects, thank goodness, but it forced me to read up on strokes. Some of your husband’s signs could quite possibly be from his stroke(s). However, it sounds like you need to get him into a neurologist who specializes in Parkinson’s. At the first visit the doctor will have him do several tests, like coordination, walking, etc. Your husband needs to be treated. If it is because of the stroke, a good doctor will prescribe meds. If he has PD, it’s the same...meds and therapy. Sounds like your husband is stubborn about doctors, but you and he really will feel better once you get a good diagnosis. Make an appointment soon. Good luck! |
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| I'm not a doctor either and as Jane said make an appointment soon. His strokes present another facet of what is happening and you really need a Neurologist to figure it out. That said it may take time to figure out a diagnosis. There are a number of neurological diseases under the umbrella of Parkinson's plus which manifest different symptoms (even slightly different symptoms.) or react to the different medications or don't react these help pin down a diagnosis. A kind of lets watch and see which way the problem develops. But the sooner you can get him to a neurologist the quicker you will be on the way to solving what it is and how to treat it. Good luck and welcome to the Forum |
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Thank you for responding to my first posting here. I know it was long and jumbled, but I had not finished it before it posted. First time to try to navigate a discussion forum and a lot to learn how to. We have moved, since hubby saw a neurologist 2 yrs ago. New PCP here said he didn't need a neurologist, but his left foot sticks/freezes so bad that he can barely walk now, plus he has most all of PD signs. I have done a lot of research in the last six years and found that PD meds might help relieve some of his issues. Does be need a referral from PCP to get an appointment with a neurologist? Hubby is in denial about all of his symptoms, except walking. Thanks for listening😊....I am thankful to have found this forum where other caregivers understand. |
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| I would contact your insurance to ask if you need to get a referral. With ours, we didn’t have to, BUT because the first two neurologists were terrible, we DID get a referral for the marvelous one he has now. We drive 2 1/2 hours each way to see his current neuro because he specializes in Parkinson’s...expensive because we spend the night three times a year, but he is worth every cent! |
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I concur. What you describe sounds very much like PD - freezing, "sticky-feet," festinating ( the step-step-step run sort of walking). If he is difficult about going to see a doctor, ask him if he expects you to be his caregiver if he becomes ill. If he does, then YOU have right to get the information you need to be able to best care for him. That kind of straight talk (said lovingly, and not when you are feeling exasperated) is important. In my experience framing the care-relationship is important, and it can change the well-established patterns of a marriage. Best, in my experience, to make those changes consciously, rather than just letting them happen. And yes. Do find a good MDS. Community PCPs and even general neurologists just don't know enough. VV |
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| When we first began to suspect my husband had a medical issue, his PCP diagnosed his tremor as "benign essential tremor" and told him he didn't need to see a neurologist. I wrote the PCP a letter outlining all his symptoms, including freezing, changes in posture, cramped writing, etc. and told him we were requesting a neurologist referral (in writing). He produced a referral the next day. I'm sure that once all those symptoms were documented, he didn't want the liability of being the one who refused a referral. If your husband's PCP is still hesitant, you might try doing the same. |
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Thank you all for the good suggestions concerning my husband's parkinson-like symptoms and how to get a referral to a neurologist specialist/MDS. I have been planning to call his pcp, but maybe I should just write a letter because I have mentioned issues to him before and he doesn't respond...just keeps typing on his lap top. Wishing you all a better than normal , good day, |
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I called my husband's pcp to ask for a referral to a neurologist and left a message. His nurse called me back asking questions as to why we want to see a neurologist and is he having new issues. I told her that his walking is getting worse and his other Parkinson- like symptoms have not been addressed in the 3 years, since his basal ganglia stroke. She said that pcp doesn't think a neuro can help him, but that she will run this by him again and asked if I have a neuro in mind, if he agrees to refer husband. There is a good teaching hospital 10 minutes from our home, with MDS and PS; so hoping to get our "foot in the door" soon Thanks for all the encouraging replies. I will let you know, when I hear something. |
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| See do you have to have a referal if not make the appointment yourself |
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| Fishing, I had checked with our insurance and they do not require a referral, but the neurologist does. Looking for a new PCP. |
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| Good news! Got an appointment for my husband next Thursday with a neurologist. Thanks for welcoming me here. I have not found a vascular parkinsonism forum anywhere...if that is his diagnosis. I hope this doctor is more interested in a 77 year old man than the previous neuro and pcps. |
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I did get my husband to the neurologist Thursday. I slipped him the list of his symptoms and he was very discreet and didn't give me away, but asked him a couple of questions from list. Het did a few manual tests, but no mri, etc. Of course hubby showed off in the 4 or 5 steps neuro had him take! He said he doesnt have PD and just needs more PT and OT. He found out that my husband is/ was a fly fisherman, during conversation and told him that he could still fly fish, "get a staff and don't go too far out in the stream"!! There is no way he could get to a stream, much less wade in. I asked if he would try hubby on PD med because I have read that sometimes it does help basal ganglia stroke victims, as the same part of their brain is affected as pwp. Neuro said he didn't have a problem with prescribing l-dopa for 2 or 3 months, but he didn't think it would work. Never the less, I am happy that he was willing to pacify me. I will let you know how it goes and thanks again for allowing me to join this forum, since I cant find one specifically related to this rare kind of stroke that exhibits parkinsonism. |
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| ndenial: my PWP also steps the effort way up when the neurologist asks him to walk. I rarely see that much pep on ordinary days. He also denies the multiple attempts required to get up out of a chair. But, I know that having a fighting spirit is important for all of us, so I try to be patient despite my frustration. Nevertheless, it is hard to know if the assessment is really helpful for determining med levels. |
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Lynn03: Thanks for sharing your experience. Being that the distance from the waiting room to the neuro's office is quite long, I brought husband in a wheelchair. He was not happy about riding, but he could not have walked that distance. The dr didn't get to observe his "every day" struggle to walk, but as you said, he has a fighting spirit, also and gets angry whenever I suggest that he use his cane or get a walker to use around the house. Also, he refuses to use the lift feature on his recliner...just gets up and falls back into chair 4 or 5 times before he can stand up steady enough to walk. I told him I'm going to put "I did it MY WAY" on his tombstone😁. Fight on! |
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I tried to post a comment concerning my husband's short trial of sinemet a couple of weeks ago, but it disappeared, when I tapped "post". I will try again. As neurologist prescribed, my husband took one pill 3xs a day for the first week ; then two pills 3xs day the second week. He didn't seem to have any adverse side effects, but when he began three pills 3xs daily, dizziness became a real problem to the point that he decided not to continue taking the sinemet. I am disappointed that we won't know if it could have helped his parkinsonism symptoms. I called the neurologist to ask the procedure for getting off the sinemet. The receptionist said she would send him the message and he would get back to me within 48 hours. He never called. My husband tapered off the med and is going to pt twice a week, if his legs are not hurting too much from the last pt. |
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| ndenial, that sounds like an awful lot of Sinemet at once. Of course I'm not a Doctor but from all my dealing with Doctors over the past three decades I'd question the Doctor about 3 pills after such a short time. The rule of thumb usually is the two pills and if more is needed they will go to two pills 4 times per day. Decreasing the time between doses. I don't know the doses Carba/L-Dopa he was taking, 10/100, 25/100 or 25/250 but I would expect anyone to have problems eary or mid disease to handle three each time. That's my feelings on the matter and to not return you note or call or even have an associate return it (if the doctors away they have another cover for them) is in my opinion unpardonable. I hope you find some help and get Him straightened out a bit. |
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Lohengrin, I am sooo sorry I made a huge mistake when posting the dosages my husband took. It. was 25-100/ 1 pill 1x day, 1 pill 2xs day and then 1 pill 3xs day. Does that sound more reasonable to start? We have an appt to go back to neuro in 4 mths, but I won't go back to him, after not responding to my call. I probably will never get my husband to go to another neuro now. Thanks for taking time to reply and again I am truly sorry for such a mistake in dosage. Rest assured that this correction is the one we followed. |
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| ndenial, Yes that sounds much more reasonable. thanks. |
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NDenial, Don’t give up...we had to go to several neurologists before we found his current, wonderful specialist/neurologist. It is a journey finding a good one, but once you do, you will feel at ease and that your concerns are being met. Good luck! |